Piece of My Merry Mind

Hello All,

Quick update: My doctor's office cancelled my prescription to Rebif with no explanation. They re-sent a prescription of Betaseron to the people at BetaPlus. That medicine arrived yesterday. I have already spoken with my personal nurse and we agreed starting after Christmas is the best option. Especially since we don't know how my body will react. I still have 2 Avonex shots so I will take one of those this week. I am set up for learning about Betaseron & how to do it on Tuesday, December 29th.

I am hopeful it will be easier to give because they give you this injector thingy, that's the official term ;) It is supposed to hide the syringe & needle. I just press a button and hold it in place while it injects the meds. I am nervous because this one is every other day instead of once a week. But it's the plan Dr. Beall originally wanted me on, so we shall focus more on the hopeful than the nervous.

As for the neurologists office... I am keeping my January 12th appt. and I will use it for complaining of how I was treated and all the miscommunication over the last 3 months. I am angry, disappointed and completely baffled over the latest events from there. I plan to tell him if it wasn't for HIM personally, I would leave the whole practice over this. I just don't want to go thru starting fresh again with a new doctor.

So my intent was to make this a brief holiday entry, hence the "Piece of My Merry Mind" title. However, it may be the drs office that will get a piece of something in 2010! Merry! Merry! And to all a good night...Love, Tammy

Mind Freak

Okay. Finally got a message, yes only a message, from my doctor's office. "The people at Betaseron are helping me appeal my insurances choice to deny me the new medicine." He told me to "continue taking the Avonex". I spoke with my contact thru Betaseron and she said my prescription coverage is changing soon. She would like to get me started on a trial of Betaseron so that I will be already established on the new medicine when the insurance switches. Apparently, already taking the medicine should help my chances of approval. It is free to me to start the meds, so I am on board. Problem? Of course. She is waiting for a new prescription authorization from my doctor's office. Well you can guess how that will play out. Wait. Wait. Wait.

So I call my pharmacy to have them ship my old medicine, Avonex, and they tell me they have another prescription for me: Rebif. I about lost my mind. Seriously, people? Really? Who the Hell is running this joint. My neurologist told me a long time ago that I am not a good candidate for Rebif. That it is not one of the approved medicines for someone early in MS. But NOW I have a prescription for it. Not to mention I have a new prescription medicine called in for me that no one informed me of or consuled me on. What the ????

I received a letter in the mail from the people at Rebif plus a phone message asking to set up my consultation to start these meds. All news to me! I told the pharmacy to cancel the prescription. They asked if I was sure? Yep. I will continue taking the Avonex even if I'm not approved for Betaseron. Unless someone can show me where it says changing to Rebif is now, miraculously a benefit to me and my form of MS, I'll stick with what I know.

The thing is, if Dr. Beall found new evidence that my MS is advancing, then I think I should be called before my meds are just randomly changed. I know he is supposed to look more closely at my MRI films with the specialist from Saginaw, but I don't think he's done that yet. I suspect that someone told him that Rebif is what my insurance rec commends and he authorized it or some nurse put the authorization thru without truly looking at my chart. I don't know. That sounds bad for my Dr. I don't think he would do that after he's been so insistent to not put me on it. I have nothing to go on, but my imagination.

I'm going to follow up on Monday with my contact at Betaseron to see if she's made any progress with my doctor's office. If not, I guess it will be time for a pop-in visit at Michigan Neurology. They may get to see a "Mind Freak" in action cuz it's all I can do not to break down and cry :(

Brain Spin

Well BCN insurance has denied me AGAIN for Betaseron. I am trying to fight it, but my doctor's ofice doesn't call me back to let me know their plan. It is so frustrating! I am still taking Avonex because Dr. Beall knew what I went thru last time, so he didn't want me to be without anything. I received some information last week about a case management nurse thru BCN. Kinda a liaison between patient, doctor & insurance co. I have emailed her and hopefully she can help me. Not giving up. Trying not to storm into doctor's office and blow up. I know Dr Beall doesn't know that this is happening to me, but how can I get to him when all my access is thru voicemails? I'm not giving up. I just wish my brain would stop spinning... Happy Holidays!!

New Frame of Mind

Hello Everyone, I saw Dr. Beall Last week and I wanted to update you. I did send the letter about my concerns of the office staff. I have heard nothing about it. So we shall see. As far as my MRI goes, Dr Beall said they see 2 lesions on it. I asked if these were the same ones as before or new ones. He suggested that he could look at it more closely with the specialist from Saginaw again. He said that he only gets the report from the technician and didn't personally see it. I asked him to arrange to view the films with the specialist. He cautioned me that this will NOT change his treatment of me, but will only give me the answer of whether or not I am progressing more towards a definitive MS diagnosis or not. He said some patients want to know asap and others assume they will find out soon enough. I guess you know where I fall. I want to know. So, he has to have the films transferred to a DVD and then take them to Saginaw. This may take a few months, but because there is no urgency, I need to be patient. I said let's get the ball rolling and I will know when I know.

Also, he is switching my injectable medication from Avonex to Betaseran. This is the original medicine he wanted me to take, but the insurance denied. It is an every other day shot, but is injected under the skin and not into the muscle like Avonex. He told me to continue Avonex until I actually get the Betaseran. He knows how long it took to work that out last time. So I agree. Been tired lately. Shaky on & off. Stumbling a bit. And the extreme numbness in my right leg and foot has returned. Oh, how fun!! Still staying optimistic. Looking forward to the holidays and seeing family & friends. Looking forward to a new medicine that may bring me a new frame of mind...

MS is a Pain in the Brain...

So, I started the new powder form of Avonex last night. Basically it is the same medicine, I just have to mix it myself. Dr. Beall is hoping this will be tolerated by my body better. If today is any indication, then I am not hopeful. I have been in pain all day long. I still am and it isn't stopping, which is worse than before. I don't know. Maybe the medicine triggers my Fibromyalgia? It is different from that pain or that pain times 10! Who knows? Guessing as always. I see him November 10th, and if there is no improvement than he wants to switch to Betaseron. I just want something that works. ANYTHING that works. So far, I feel that I haven't had much improvement. Dave insists I have had better days. Maybe he is right. It is hard to remember those moments during these painful ones. I still feel I'm in the middle of a relapse and I know this isn't a cure so...

The nurse who came to train me on this shot was very nice and very understanding. She actually listened when I spoke and acknowledged the symptoms I told her about. Novel idea, I know. Anyway, this week with my neurologist office was another episode of the keystone cops. They say they will accomplish something and when they don't, they blame me. I almost didn't get my prescription or a nurse to come out to see me due to their apathetic attitude. Well, I have had enough. I have decided to write a letter to the head of the neurology office and tell him about all that is happening. I also will be asking for a phone call or a face-to-face with him at my next appointment. Patients shouldn't be made to feel this way and my patience is certainly been tested. So we shall see what happens there. Hopefully, they don't start tripping me at my appointments, if they find out I complained. Oh, well. I can take care of myself. MS may be a pain in the brain, but Dr. Beall's staff is a pain in the butt!

Water on the Brain (Just keep swimming)

Sorry for the long break between posts. I was hoping for something new to say. It has been a roller coaster couple of weeks. Up & down as far as how I've been feeling. I started a bad flare-up, or "relapse", last Saturday, September 12th. It didn't start til that night, so that was good. (I was on a date with Dave celebrating our 12 year wedding anniversary!)

We had gone to dinner and to Barnes & Noble in Rochester Hills. I know it sounds kinda boring, but we used to do that all the time when we were dating. We would split up and browse around. Then we would find each other and talk about things we found. Split up again and meet in the cafe for dessert and coffee and decide what to buy. It was so relaxed and enjoyable. You sure don't get that with kids around. We even had some full conversations without anyone saying "Mama" or "Daddy". We had a really nice evening. Sometime while we were walking separately, I began to feel unsteady and tired. I didn't want to leave. I wanted my time with Dave. So I pushed myself more. Than I "hit my wall". I had to stop. But I couldn't find Dave. I finally located him and he met me in the cafe. Sitting helped and we had a drink. I had my favorite, caramel apple cider. (So yummy...mmmm.) We decided to head home and I would finish my drink on the way home.

I could really feel the fatigue. But I still wanted to talk with Dave, so we did. When we got home, we were sitting in the car and talking for a couple minutes. All of a sudden, my hand jerks and my cup goes flying up in the air and tumbles between us. Thank God, it wasn't hot anymore and it was almost empty. But so embarrassing. That happened once before with my sister Shannon. We were at Shelly's bachelorette night and we were talking. I was holding a plate of appetizers when all of a sudden my hands jerks and the plate goes flying. Embarrassed then too. What can you do?

So that is how this flare up started. I was shaky the next day and as the week has gone on the fatigue has returned. I had my shot on Thursday and Friday was a really bad day. I have been having a bad reaction the last few weeks the day after my shot. I wake up in horrible pain and violent chills. They say this is common. "Flu-like symptoms". This isn't like any flu I've ever experienced. I have read on an MS forum that other people have had this extreme reaction like I did, but that it does pass. I am trying to find my patience. I take my Darvocet at bedtime and as soon as I get up. It takes some of the edge off, but it still is uncomfortable.

I saw Dr. Beall on Thursday, September 17th. He wants me to try the powder shots you have to mix yourself, instead of the pre-filled syringes I've been using. He says these are sometimes tolerated better by patients. If there isn't a change by my next appointment in November then he would like to try Betaseron. He feels the shots are helping me. And at the beginning I felt it was, but I'm not as sure now. He hasn't detected any weakness at my appointments since I started the Avonex. I detect it, but he doesn't. This can be frustrating too. I feel bad, but he says "normal." I asked him how he can find no weakness, but I can feel very weak. He says it can happen. When he sees me, it may not be showing at the time. But he could see me an hour later or the next day and have a different evaluation.

All I know is how I feel and lately, I am trying to keep my head above water. Like Dory from "Finding Nemo", I love to say..."Just keep swimming. Just keep swimming. What do we do? We swim."

To Cane or Not to Cane?

So the decision to use a cane was one that I thought about for a while. After reading how some people with MS had actually fared better with it, I decided to try it. From what I had read, many people found they exerted less energy when they opted to use a cane than when they walked solo. I figured I can use all the energy I can get. So I purchased my pretty, green cane.

Now the stares and the judgements begin. Am I "milking it" or "looking for attention"? I can't be "that bad", right? My decision is a daily one, one that I typically make as I walk out the door. "How do I feel right now?" "Will I being doing something that will wear me out while I am gone?" "Have I already done too much and about to "hit a wall"?" "Will there be a lot of walking?" Or "will I be far from my car?" "How is my balance today?" "Or my weakness?" "My energy?" These all come into play.

Sometimes, I run out the door without my cane and as soon as I get out of the car and start walking, I regret my decision. "I should have brought it." Now, I begin the dance of "Don't fall. Don't fall." Place my hands out and try not to stumble. Pray I don't make a fool of myself. When I left, I thought I was doing well, but sometimes moving around the house doesn't effect me as much as walking from my car to the entrance at Walgreens.

Many times I get somewhere and realise, "Great! I don't need this today." So it sits in a corner or with my purse. That is when the real stares begin. "See! She doesn't need it." "It's just for attention." I find this more from men than women, but the judgements can come from anywhere. It can make me feel guilty for having a "good day/hour".

I saw Montel Williams on Oprah this week talking about his experience with MS. He said, "everyone's experience with MS is different. Some people have balance problems. I don't. But I experience more pain. Others don't. " This is the big mystery with MS. You never know how you will feel or how your body will react. And every person is different. Today I am trembling alot. I look like I'm going through some drug withdrawal. Tomorrow that may be gone and I may trip more. Yesterday, I experienced the worst pain I have ever felt with this. I told my sister, It was neck and neck with the intensity of my labor pains. That is saying something. I kept thinking, at least after labor, I have a baby!

So, I try and ignore what others are thinking. I try and make lite of it because I know the truth. They don't truly understand. I don't really need any attention. I don't even need sympathy. I would just like some compassion and to be given the benefit of the doubt. I am doing the best I "cane". So today..."To Cane or Not to Cane?" That is the daily question.

Insane in the Membrane...

Well good days and bad days, that's for sure. I need to figure out when a good balance will occur. The worst part for me is as soon as I say I am feeling better people start to assume that I won't ever feel bad again. And if I do have a bad day, I get the comment, "Well, I thought you were feeling better?" I was, but today I am not. It is frustrating to feel like I can't say I am good or bad without feeling guilty in some way.

I feel like I have to keep my feelings to myself, even with some of the people that are closest to me. It is very lonely feeling, like I have to suffer alone. I absolutely am able to put on a brave front and "fake it till I make it" facade. I am an expert, but sometimes I wish I could just vent without having to explain or justify "why". I don't always have an explanation. One day I may be stumbling or losing my balance more. The next I can be in horrible pain. And the next simply exhausted. I can't explain it, I'm just trying to get by and live my life the way it was dealt to me.

Even with MS, I love my life! I have a beautiful family, a nice home, a good job and food on my table. I couldn't ask for much more...maybe a little less debt, but I am working on that. I just feel like keeping in how I feel is counter-productive and can only drive me insane. Short trip ;)

Mind Mending

Hello! Hello! Hello! I am starting to feel better!! I know, I know. Shocking!! So, I think the shots are starting to take effect. I am definitely not 100%, and some new symptoms are rearing their ugly heads, but I am noticing a difference. I FEEL different. More energy. Less fatigue. A lot less pain. Honestly, it's a feeling I have inside that something is changing. My vision and bladder problems are still around. As well as my endearing "drunk walk", but I'm hoping these symptoms will fade as well. I feel like I am at the beginning of a breakthrough. My mind is on the mend and I'm loving it!! Ba da ba ba ba, I'm lovin' it! ;)

Hop of Faith

Three shots are officially under my belt. No results yet, but I am staying positive. People keep telling me that I look good. My answer is "the wonders of make-up and a positive attitude." ;) I do have faith and patience that this medicine will eventually work. If this one, Avonex, isn't the one for me then maybe it'll be one of the other medicines that do the trick. I refuse to give up on my hope that my life will return to some normalcy. Some other friends with MS that I have spoken to said it took several weeks before they noticed a difference on their shot therapy, so time will tell. I believe I am in a bit of a relapse and that is putting off the relief. Lately, I have been really tired and in a lot of pain, but I keep smiling and "just keep swimming". Never give up! I see Dr. Beall on the 27th so we shall see what pearls of wisdom he can offer to me. I am keeping the faith for now. I may be too tired and disorientated to take a full leap of faith, but I probably can manage a small hop of faith :) Hop on Baby!!!

Traffic Jam

It's been one week since the first shot. I will give myself shot number two tonight. What a crazy week! At first I experienced a little more energy, but since then my other symptoms have been slowly creeping back up and getting worse. I know that it isn't from the shot and that I really shouldn't see any real relief yet, but I wish I felt better.

I started getting my blurry and double vision again on Friday & Saturday. By Sunday I was having bladder issues again. I almost didn't make it a few times! So I added my Ditropan back in for Sunday & Monday. (That helps, supposedly, with the bladder urgency). Monday I started getting tired/fatigued again. By Tuesday, I was in pain and tired and weak. That escalated on Wednesday. The pain seems more from my Fibromyalgia, which really hasn't bothered me in a while. I think that is acting up because of the rain this week, but that is only a guess.

Today, the pain is better, but the weakness and fatigue are really strong. Also, my balance problems have been bad the last two days. I look like a drunk delivering the paper. I often wonder if anyone sees me and thinks that is why I have this job, so I can hide my drinking problem. Thank God for the cane, it definitely helps to steady me when I feel like I'm weaving in & out of life. Like my own personal traffic jam. All the nerves jumbled up and sending the wrong signals to each other. Beep! Beep! Let us through! Tammy needs to function properly! Hopefully, I will see some progress soon. Dr. Beall did say it would be about a month, so I will stay positive and have patience. No road rage on the MS highway...

Pierce of Mind

Well, I did it! I gave myself my first injection. And it didn't even hurt :) Yeah! So basically, the nurse came to my house (an hour early I might add) and I was so nervous. I felt like I was going to throw up or jump right out of my skin before she arrived. She came in and we sat down at the dining room table to discuss what we, or I, was going to do. I had taken the ibuprofin an hour before, so I was set on that. I had been drinking water all day too. She told me I should start the water the day before, the day of and the day after to put off the flu-like symptoms in the future. She discussed with me how to piggy-back ibuprofin and Tylenol to first put off aches and pains, and second to put off the fever and chills. Dave joined us at the table to be supportive and in case I needed his help. I'm sure he was hoping I wouldn't. So then she brought out this little leather puncture pad. It looked like the side of an old style punching bag sliced in half & mounted on about 8 inches of wood. This was my practice leg. We undid our syringes, hers for practice, mine for the real thing and assembled them. (I took mine out of the fridge that morning to bring it to room temperature.) Then we set them down (still capped) and she asked if I had a sharps container. I did. She told me to check with the city on how to dispose of them or I can take them to my local fire department. (Interesting. Maybe I will see my brother-in-law, Alton, about that :) Maybe.)

So then the instruction began. The injections should rotate on the thighs, starting right/side, right/top, left/top & left/side, all in the upper most part of the thigh to minimize any pain. She told me it wouldn't even hurt. I was a little skeptical, but hoped she was right. She told me to hold the syringe like a pencil and push it into my skin confidently, then push the medicine in with the plunger. Scary... So, she showed me a few times on the practice "leg" and then I practiced a few times too. She told me to take as long as I needed. I asked who had taken the longest for her to practice. She said an older man had taken 2 hours. That he just kept saying, "just give me a minute" and then he would panic again. She said the lady she trained before me looked like she might pass out. I sure felt that way, but I had a 7 year old and a 3 year old watching me. Oh, yeah, they were there, like little voyeuristic hawks. So I kept practicing, for another minute or so, but I realized that was making my anxiety worse. I needed to just do this now or I wouldn't be able to, so I said as much to her.

Then she instructed me to open up some gauze for after, then I opened the alchohol swab to clean my thigh and picked up my syringe. I poised it ready to push it in and ... ... said, "ok, wait a minute." She told me to take my time. Then I see Kristina like 6 inches from me, seriously, I had to ask her to back up, and knew I needed to be especially brave. I took a deep breath and pushed it into my thigh. No pain. I pushed in the medicine. No pain. I pulled out the syringe, slight poke of pain, nothing really. I put down the syringe and used the gauze for a little blood and I was done. Simple. Yeah. Medicine in, anxiety gone.

She told me that the symptoms, if I got them, and she insisted I wouldn't, could come on in as little as two hours and as much as 8 hours. She gave me a journal to record when I gave myself the shot. To write down my feelings about it and to record any symptoms I get. Also, to record any questions, etc. for the dr in July. She got ready to leave, looked at her watch and said, "Wow! That was fast! You were my easiest patient today." We were done in 20 minutes. I felt a little proud about that.

She left a little after 2:00pm, and I started experiencing some tiredness around 5:00pm. By 6:00pm, I was a little nasaeus and achy. I was asleep by 7:00pm. This morning, 3:30am, I still have the nasea and a slight headache, both of which have lingered throughout today. However, considering what I was expecting, it really wasn't that bad. Some of the side efeects I have read from other patients, included violent chills, exhaustion and fever up to 104 degrees and painful muscle aches. So the slight discomfort I felt, I can live with. Now, I just wait to notice the day to day improvement. I had a little more energy this morning, but that seems to be fading. But no overnight miracle here. Dr. Beall said about a month for a return to normal, so again I will rely on my patience and positive attitude to get me through. I will let you know how my symptoms progress. As of right now my injection is offering me some "pierce of mind". ;)

Brain Change

Hello Again after too long,

Well, contrary to what I reported in May, my doctor is NOT appealing the decision. My pharmacy was misinformed, although I guessed this prior to confirming it. It just seemed too smooth of an accomplishment for this office. So, I was then informed by my pharmacy that my neurologist decided to go with the insurance and prescribed the Avonex anyway. This is not a surprise to me since it was originally an option we discussed. So after another month of waiting and a lot of paperwork, the nurse is coming today to train me how to give myself the shot. Finally!!! This shot, Avonex, is given once a week into the muscle by myself. The symptoms can come on stronger, but are supposed to dissipate over time. The results are the same with both Avonex and Betaseron, just every patient is different and responds differently. So wish me luck.

The side effects are flu-like symptoms, tiredness, weakness, achieness and chills. But I am supposed to combat that by taking the syringe out of the fridge in the morning to allow it to warm up. Also, I take Ibuprofen an hour before and drink lots of water that day. The nurse claims there is a 50/50 chance I will get the symptoms, although I have read differently. However, no matter what they should disappear in as little as a month or as much as 6 months, so I will let you know how it goes. So at 3:00pm today, I will be learning to give myself a shot and will begin the process of feeling better. Thank God!

Love to all!! -Tammy

Update for (Prescription) Writer's Block

Just wanted to let you know that my neurologist, Dr. Beall, has decided to appeal the decision my insurance made to not allow me to take the Betaseron. I don't know if it'll work, but we are trying. If not, then I guess I will be trying the Avonex. During this little escapade, I found a forum with message boards thru the MS National Society website called MS World. The people on there were very helpful to give me some perspective on the different meds and what is worth fighting for and what may or may not work. Every MS patient is different and responds differently. So, I am going to see how this plays out and go from there. I will let you know as soon as I hear anything. What's a little more time right? Staying positive, hopeful and laughing as I fall down! :)

(Prescription) Writer's Block

Where to begin...hmmmm.... Well, as you all know, Dr. Beall prescribed Betaseron injections for me to give myself. Finally, the prescription was called in and the company BetaPlus (formally MS Pathways) contacted me. They were SO NICE!!! They contacted my insurance to find out what it will cost me to fill the prescription per month. They also informed me there will be no maximum cut-off to the benefits and no deductible. That the medicine is mailed to me and I can determine if I want a 30 day or 90 day supply.

Then, they assigned me a BetaPlus nurse, her name is Linda (good name, huh, Mom?). She contacted me, also, VERY NICE!! She informed me that my prescription was being filled by a company called Optioncare and once they contacted me, then she would call me back. She told me that she was my 24 hour a day, 7 days a week link to help and support for the Betaseron shots as well as any questions regarding my early stages of MS. She sent me a start up kit with an instructional DVD as well. She said once I had the medicine, she would come to my home and train me how to give myself injections. So I waited.

The instructional kit came on Wed. May 13th and I watched the DVD. Had a little panic attack about giving myself the shots, but I know the anxiety will pass once I have been doing it for a while. Still freaky, but I will deal with it to have the medicine. On Thursday, May 14th, I called Linda back to tell her no one had still contacted me from Optioncare. She gave me their number and said if I had any problems, then she would be my muscle. :)

So I called Optioncare and was told they were still waiting for approval from my insurance. So, being pro-active, I called Blue Care Network myself. I was told they were still reviewing my claim and had 24-48 hours before they had to reach a decision. Here are my first pangs of doubt. So I had to wait til Monday to hear. No phone call.

Tuesday, today, I called BCN to be informed that I needed to try another drug before they would approve this one. Isn't that a kick in the teeth? Some stupid bureaucratic person in an office somewhere, gets to tell me I can't have the medicine I want. Not my doctor, but someone who has never met me. And it gets better, they say if I try the medicine and it doesn't work for me, THEN I most likely would be approved for the Betaseron I wanted to begin with. So, I need to put another medicine in my body, experience it's side effects, which I was already told weren't a good fit for me, by my doctor, and then go thru it's withdrawals to get what I wanted in the first place. Poetic, isn't it?

I am told I can issue an appeal, along with my doctor, for the reasons I need this drug imparticular and why the other one is not good for me. I don't know if that will be supported by my Dr or not. I put a call in to one of his nurses telling her why I wanted the Betaseron over the Avonex. She said she would start working on the process of helping me. I told her I wanted Dr. Beall to write an appeal for the drug, not only for the lesser side effects we already discussed, but for the support system. That to me is invaluable! I could have someone, outside of my very busy neurologist's office, be there for me any time of day or night. Instantly.

Frankly, Dr. Beall could say I need to try the Avonex first. It was one of the drugs we discussed. He told me because it is injected only once a week, most of his patients are laid up for two-three days experiencing flu-like symptoms. While the Betaseron, breaks down the same dosage over the whole week, so the symptoms are greatly reduced. Every week down with the flu... Is that better than where I am at? I don't know.

The nurse I spoke with said she is seeing the insurance companies denying more and more recommended drugs in the last year than she ever has. That she feels it is unfair to the patient. I agree. I am not going to break down over this. I am going to fight to try and get the drug I want until they tell me I can't. I've waited this long, so I guess I can wait a little longer. I may have to withdraw my earlier challenge to the bridesmaids and dancing circles around them. However, the prescription writer's block better be up for the challenge of me. Watch out!!

Brain Haze

Sorry for the delay everyone, but I have gotten quite the runaround lately. I finally had my steriod infusions on May 6th, 7th, & 8th. At first I was extemely wired and had bursts of energy. I still was losing my balance and feeling weak in my arms and legs. By Mother's Day, I began to experience, what I can only describe as a drug induced haze. Everything I experienced was a contridiction to another feeling. I was in a lot of pain, but everything felt numb. My vision was blurry, but colors and things appeared brighter and surreal. Every sound was amplified, but I couldn't focus on what was being said to me. As if people were speaking a foreign language. I felt completely overwhelmed and lonely. It was pure insanity. I likened it to some sort of side effect to the steriods since nothing else had changed. This lasted almost exactly 48 hours.

Then for the next three days I experienced extreme exhaustion. I slept as much as I could. On Thursday, May 14th I began to feel some improvements. I felt a little more "normal". This has only been a fleeting feeling, as it comes and goes. I still have been losing my balance, tripping and experiencing the weakness & numbness. Had some tremors over the weekend as well. So, not totally sold on the steriods yet, but they said the benefits may take longer to show themselves, so I am still giving the infusions the benefit of the doubt.

Once I see Dr. Beall on June 16th, I will question if the crazy, drugged effects are normal or not. Then we can decide if this seems to be the right choice for me. I have enough of my own issues without adding drug trips to the list. Brain haze is not a side effect I want to keep!

Brain Wave

Hello everyone,

This blog finds me much happier than the last couple. I saw my neurologist, Dr. Beall today. I am happy to say that it went very well. He came into the room with a declaration about the researchers not seeing my lesions, stating that the study wants to see them 6 milliliters or larger and mine are 3 & 4 milliliters. He also said that he has been learning more about the drug for the clinical trial since he saw me last. He learned that the drug cannot be combined with any other treatments and he felt that may have been a bad move for me. "So this may have been a blessing in disguise;" was an exact quote.

He then examined me and still found weakness throughout my body. In my legs and feet especially. He noticed that my gait (style of walking) was off as well, including numbness. He asked about bathroom issues and I explained I was having trouble making it to the bathroom on time. I feel like a little kid who waited too long. Based on all this we have a plan of action.

He gave me a prescription for Vesicare for the bladder problems. I am starting steroids again (Celumedrol) as soon as my blood work and chest x-ray (Monday) come back clear. And he is starting me on an injectable MS drug called, Betaseron. I will have to give myself shots and someone will come to the house to teach me how to do that. The company MS Pathways is supposed to contact me to set that up. I am trying not to focus on the needle issue. Desperate times and all.

He is taking my latest MRI back to Saginaw with him to have his specialist look at the new films. He told me I was the first patient he did this with and since then he has been working with the specialist on other patients and has been successfully helping them as well. He said he has done this drug protocol with other patients similar to me. That most of his patients are back to "normal" within a month. That one of his patients has been symptom free for two years. A couple others who did become diagnosed with definitive MS, have had fewer and shorter lasting relapses. He is very optimistic for me. So am I.

Needless to say, I am very happy to become active in my treatment. I am hopeful that I could be showing improvements by my sister Shelly's wedding on May 30th. So fellow bridesmaids, watch out!! I may dance circles around you at the wedding!!! Maybe... We shall see, but no matter what my brain is waving the victory flag and being quite hopeful! Keep moving forward my friends. I will persevere...

Mind Over Matter

Hello Everyone, Well it's a new week and a new chance to move forward physically and mentally. Last week was definitely upsetting and frustrating, but that is in the past now. I need to prepare for my next appointment with Dr. Beall on April 23rd. He will be ready for the next step for me and my treatment plan. Keep moving forward!

I know some of you are worried about me and some of you are also a little confused. Please remember that this was NOT a second opinion. This was a suggested path of treatment for me AFTER I received my diagnosis from Dr. Beall. He told me from the beginning that he felt I was a good candidate for this clinical trial, but that didn't mean I would definitely be accepted. I did not meet the criteria that the researchers want for the patients participating in the trial. So now we see what other avenues Dr. Beall wants to take with me.

As I said before everything happens for a reason, so I have been trying to see why it took so long for me to get my answer. One thought I had was maybe with all the delays and problems they had just getting me screened for the trial, maybe that is how the whole trial will go under this particular researchers watch? Maybe that would have proven more harmful than beneficial for me? If the whole trial was going to continue like this then maybe this is for the best. I certainly wouldn't have seen that if I had not been given the run around for the past four months. Maybe not, but it's a theory.

Maybe it will be more beneficial for me to try this drug once its been approved by the FDA and all the "bugs" are worked out of it? Maybe it will have no benefit to me at all? Who knows? But I have accepted that this is not the path for my medical treatment and am hopeful and ready to begin whatever Dr. Beall suggests. Lord knows I've been patient!

As far as how I've been feeling lately, I have been shaky and clumsy. Still really tired and napping alot. No double vision the last couple weeks, just blurry & cloudy spots. Pinpoint head pain has been really prominent. It's not really a headache. It just feels like different spots on my head get sharp, throbbing or stabbing pain. It is really bad when my mind gets foggy. That definitely has been more bothersome lately. The foggy brain and inability to focus or concentrate. That's been fun because since the Detroit papers have slowed their delivery we took over delivery for all the other papers like USA Today, Wall Street Journal, etc. Trying to keep all that straight at 3:00am and make sure everyone gets the right paper makes my head hurt. The first few days I had to fight from crying over the frustration. I just talked myself down and thought "go slow and it'll all work out". It did, but six different papers...WOW, too much!

I don't know if I mentioned it, but I bought a cane. I don't need it all the time, but it definitely helps if I need to walk alot or far. Especially at the end of the day when I am most tired. It helps keep me steady when my balance is off and when the numbness in my right leg is bad. It certainly makes me feel more confident when I have to walk with Paul to pick up Kristina from school. I am less afraid I am going to fall. When I do feel like I might fall, I at least feel like I am helping myself. I don't use it at home or on my route, that seems pointless. It really depends on the kind of day I am having, but I had read about this in the book "Women Living With MS". Many women said that once they started using it they hadn't realised how much energy they were wasting just struggling to keep upright. They weren't kidding. Most times when I am walking without it, no one would ever know, but I am repeating in my head over and over "Don't fall. Don't fall. Don't fall." I even picked out a pretty one. It's a soft green with white flowers. Hey! If you have to have it, then have it on your own terms!

So I hope you can tell I am attempting some optimism here. This will not break me. A little mind over matter. I may be a person living with CIS/early MS, but I am living!!
Love to you all, Tammy

Brain Failure

Well today I have bad news. I wish I could say it was an April Fool's joke, but it is not. I will not be doing the clinical trial. I found out yesterday afternoon that I do not meet all the requirements necessary to participate in the trial. My neurologist can recommend me as a candidate, but the study researchers perform their own tests and make the final decision. Needless to say, I am devastated.

I know "everything happens for a reason". I have to believe it, but I am having a hard time understanding why I put my health and treatment on hold for almost 4 months of delays only to be denied what I was waiting to do. One day I am sure I will see why. I need a few days to be sad and then get up and start to move forward again. This will not break me. I feel broken today, but I will push thru...I have to...

I will see my neurologist on April 23, 2009. From there we will discuss the other options he mentioned before. He may want to repeat steroids or try a different avenue. I will let you know as I know. So as for now, this blog will remain what it has been; a blog updating you on my health. It will not become the diary of my clinical trial, just a personal journey thru trial and error.

Please keep me in your prayers. I need to find my strength from all the love and support from my family and my friends. I can't survive without it. My brain may be faulty, and this trial may have failed me, but I will not fail myself. Brain failure....? Brain reborn...? Brain recharge...? We shall see...

Brain Delay Two

Another minor delay was brought to my attention today. Nothing major. I just need to repeat my MRI due to some technical/equipment failure. I will be re-taking the test on Wednesday, March 18th at 9:15am. From there I should know if I qualify for the trial by March 27th. So far all my tests are in the range I need to enter the trial, so the MRI will be the final factor. I know it is frustrating, but try and find patience, as I am. These delays must be for a reason. I need to believe that. So march on, Keep Moving Forward. One more Brain Delay won't change a thing...

Testing, 1, 2, 3...

Hello Everyone, Today I began the screening process for the clinical trial. Finally!! It went well. Basically it was questions about my medical history, family history, symptoms, etc. Followed by blood work, and other basic tests. I had an EKG and an MRI today. I need to get a chest x-ray tomorrow. I was evaluated by two neurologists, including my own, Dr. Beall. I should know my results by the end of next week.

I spoke with Dr. Beall and the head of Research, Jenny, about my concerns over the MRI results in the past. Apparently, these results go to Germany where 5 neurologists evaluate them. this way one person isn't deciding your fate. What Dr. Beall said is that what they find on my MRI will make or break me being able to participate in the trial. To refresh you the first MRI tech did not find any lesions. Then Dr. Beall sent it to a specialist in Saginaw, MI to re-evaluate and he found 4 lesions. So we need to see what they find in Germany.

Dr. Beall said, if they do not agree I have lesions, to please don't be discouraged. He claims to have many other approaches he would like to take if I do not enter the trial. If they do find them then I should be able to enter the trial within the next 28 days. Jenny said that my EKG came out "abnormal", but that sometimes the machine says that, but when analyzed by a doctor they find it normal. Since I have had this test within the last 6 months and it was normal, she is not concerned.

I will update you as I get more results and information, probably by the end of next week. Thanks again for all your love and support. Testing, 1, 2, 3...

Brain Delay

Hello everyone, Sorry for the delay in my response. I know you believed I was starting my trial on February 16th. I was supposed to, but they cancelled that morning. I didn't want to write until I had a new day with confirmed appointments, which I do now. My new start date is Wednesday, March 4, 2009. I begin at 9:45am going over paperwork and signing consent forms. At 10:45am, I will have my new MRI, followed by an evaluation by my neurologist, Dr. Steven Beall. On Thursday, March 5, 2009, I will have a chest x-ray. This is all the items they need to do for screening the patients recommended for the clinical trial. Based on these results, they will decide if they agree that I am a good candidate for the study. I will update you after my screening process next week and as I learn more about dates and procedures. Thanks again for your support, patience and love. Hopefully this will be the last brain delay...

Brain Wash

Well, the trial is set to begin!! Yeah!! I hope I know what I am getting into. Anyways, the head of Research at Michigan Neurology called me today. I will be screened on Monday, February 16th at 10:30am. I will keep you posted as to what tests they do and how everything progresses. Please keep me in your prayers that this will help me and be an answer for me. The last few weeks have been a real struggle. I have been extremely exhausted and weak. I am losing my balance again, not to mention the double and blurry vision. So, basically no changes, just more frustration. Hopefully, that can be replaced with some hope now. My love and gratitude to all! Let the brain washing begin...

Mental Note

This will be a short one. Just wanted to let you all know there has been another delay in the beginning of the clinical trial. (I know.) Apparently there is some hold up in the legal department and not with the staff of my doctor's office. They are anxious to start as I am, but I guess the legal department is moving slowly to go over everything with a fine tooth comb. I am trying to be patient, but my patience is definitely being tried. So, the new date for the meeting is February 4th. hopefully, this will be the last delay. My numbness, weakness and double vision are not subsiding, so I am anxious to try something soon. Please keep me in your thoughts and prayers for no more delays. Thanks again for all your support. It truly does mean the world to me!! Love, Tammy

Double Trouble

Just around New Years Eve I started experiencing my double vision again. This will be the third occurrence in a year. It seems to return approximately every 6 months, give or take a month. My first episode was last January in my left eye. It was after I had been up reading late one night. No matter what I did, the double vision wouldn't stop. I decided to mention it to Dave and see how it was in the morning. The next morning it was gone, but I did tell Dave and he was like "Great. What else is wrong with you?" This was really at the very beginning of me having admitted there might be something wrong at all. But it was before the ER and well before any neurologists entered the picture. I continued to have blurry or cloudy vision for the next few months, almost daily, but the double vision didn't happen again. I figured it was a fluke. <>

In July, right before my spinal tap, it happened again. Only this time it lasted longer. It would continue for the next week and last several hours at a time. It seemed to be most bothersome when I was watching TV or reading. This time it shifted between both eyes, but seemed most prominent in the left. It stopped after about a week. I mentioned it to the doctor again as an FYI.<>

So now I am in my third episode of this. Again only in my left eye, like the first occurrence. It's been over a week and it hasn't let up at all. It happens several times a day and the blurry cloudy vision is there when the double vision takes a breathier. <>

I have been feeling worse lately. More exhausted. Definitely more limbs going numb, which is still weird & scary. The weakness still feels bad and has been accompanied by more pain. I think the pain is a combination of my Fibromyalgia and whatever else is going on in my body. It is hard to drive sometimes trying to compensate for the weakness and the pain. I usually come home or don't go very far. <>

The meeting for the trial is in 5 days. I can't wait for them to set up the screenings! At least then I will feel like I am accomplishing something or making an effort to get better. I ordered some books with my birthday money. "MS for Dummies" a good reference book, a book about exercises for people with MS and a book by Montel Williams called "Climbing Higher" about his experience with finding out he had MS and living with it. The exercise book I was happy to find because everything I have read ,and from what my neurologist has told me, was not to exercise. It is believed that by heating up your body you can exacerbate your symptoms and bring out new ones. This book does caution you to be careful because "exercise can be detrimental to your health." But they give options to try during good days and bad days. Once my good days kick in I hope to try and put some of these exercises into practice. <>

I found the Montel book an easy read like the book "Women Living with MS" that I wrote about last time. It is good for me to read about others experiences and how they dealt with it; how it has made them stronger. Also, many people seem to be ready to pass on advice on how they would do things differently. So knowledge is power! <>

I will write again after I hear about the trial next week. Let's hope double trouble becomes mind over matter...

Meeting of the Minds

Happy New Year!! May 2009 find all of us healthy, wealthy and wise! (Ain't that the truth.) I have been having a really rough past few days. Typically my right side becomes numb, but the last few days both arms and legs have been going numb. It is so weird and scary! I can barely get off the couch. I wanted to brush my teeth and shower yesterday. I felt that if I couldn't be productive, the least I could do was be clean! When I was attempting to come back down the stairs, I told Dave that normally when my legs feel weak, I go slowly and use my hands to brace myself. However, since they were numb too, I felt like I had no safety net...I felt like a floating torso! Anyways, so tired! I was a little foggy with my mom shopping last week. I kept misplacing things (only in my mind) but they were right next to me or actually in my hand. It is all still unnerving, but I am trying to come to grips with this CIS/MS...slowly, but surely. <>

My mom lent me a book she bought called "Women Living with Multiple Sclerosis" by Judith Lynn Nichols. It was really a great start for me to look at as I try and get some information. This book was actually created out of an online chat group of about 20 friends with MS. They all met in an info section of an MS website. They became friends and went off to form their own friendly support group. The author then compiled their emails to each other into different subjects and created this book. It is really a great tool because you get so many different prospectives and since no one's experience with MS is the same you are sure to find someone similar to yourself.<>

I highly recommend this book to anyone who is looking for answers or understanding about what they are going thru or what to possibly expect. I would like to quote a few sections I liked in this blog to share with all of you. First off I found it very interesting that several people are diagnosed with "possible/probable MS". That's me! Unfortunately, several of these woman have that label for 10-20 years. In my favor is part of the reason, for some of them, is there was no MRI before, but others are CIS like me.<>

My first indication that I would find comfort in this book was reading about a 28 year old woman who had finally been told she wasn't crazy and her neurological exam was abnormal. She and her husband were happy. This followed: "Is this possible? A young wife and mother suspects she has a catastrophic medical problem and she rejoices when a doctor tells her she's probably right? If (she) is experiencing the first signs and symptoms of (MS), it's not only possible, it's very likely. ...many of us have concluded that anything is better than those first days or months or years with (MS), when there are no answers to explain the strange happenings within our bodies."<>

They even helped with validation on the disorientation and the forgetfulness, they call them "flutters": "Set timers to remind ourselves that we have food in the oven, ... children to be picked up from school, ... or anything else that requires our attention at a particular moment. Then we have to write notes to remind ourselves why we set the timers." I can totally relate to that, I forget things almost instantly, especially when I'm really tired or pushing too hard.<>

Another chapter called "Tired of Being Tired" (love the title!) refers to just what you would think it would in this single MS symptom. (They refer to MS in this book as the MonSter.) One woman is venting about her frustrations over the littlest thing tiring her out, like getting dressed and needing a nap after. I like how she ends her post: "I will not let this MonSter conquer me (even if I am too tired to remember where I am or why I am there)." I am right there with her. I am not giving up, but still affected.<>

Lastly, one girl ended one of her posts with some advice for people newly diagnosed. "MS does not affect all people in the same way. Nor are the side effects of different medications or treatments the same for all of us." Another said, " I think the biggest help is to realize we are not alone in this, and to allow others to minister to us in all ways, just as we continue to give to others." I think that was the biggest thing I got out of this book. I am not alone. These women gave me definitions to what I was feeling, answers to my questions and validation to the symptoms I was expereincing. That was definitely a great read for me, and a wonderful meeting of the (MS) minds...