Well had another neuro appointment today. At least I am doing well, but that makes me like going even less. The only reason I mustered the energy to go was so that I could get order to make sure my liver is hanging in there. I certainly don’t want it to fail on something not fun like Rebif! Eriksgirl asked why he doesn’t write anti-depressants. After a brief discussion he said he does, but does not write Wellbutrin. Of course his medical assistant did not make that clear. Apparently, this stems from the original Wellbutrin had a seizure rate of 1 in 200 as compared to the antidepressant norm of 1 in 2000. He said this has supposedly been fixed in the Wellbutrin XL (what I was taking), but he is biased against them now. Of course I would have happily tried something different had the MA made that clear. Of well, hopefully no more Solu-Medrol and the need for antidepressants.
Well back on the antidepressants. This time I’m (we’re) giving Wellbutrin XL a try to see if it works out better than Zoloft. Zoloft side effects were unpleasant, and I’m certainly glad that there is something another drug to try, but still not too excited. I always thought that antidepressants were like a magic bullet and returned people back to their former selves, or maybe even happier selves. Sadly this has not been my experience. While it does make me a ton better than what I was (and is preferable in that sense), it does introduce a skew in my personality – a 3rd Erik (as opposed to normal and depressed). Many days I wonder if the “normal Erik” days are gone and just a distant memory – and maybe have become my “good ‘ol days”!
I got an email from a nurse wanting to ask some questions for an upcoming seminar. Here is my response that I emailed back. Hopefully I was coherent, I’m just really not in the mood to proof read.
- How old were you when you first had symptoms?
- How long between first symptoms and diagnosis?It was about a year because the symptom went into remission, and I just wrote it off.
- What was first symptom?It was numb feet, which I just wrote off as being part of my flat feet.
- What symptoms do you now or have experienced? What is the most difficult to personally deal with?I have been in remission for a while. The most difficult exacerbation was the one where I lost almost all control of my hands. This was the exacerbation when I was diagnosed, and it didn’t respond immediately to Solu-Medrol treatment. I was very concerned that it was going to leave me crippled, and unable to work and provide for my family. Here are some of the other symptoms I have experienced:
- Pain – burning and throbbing. It is usually in my legs or arms, but occasionally I have had the burning on my back Highest pain level was a 5 on the 10 point scale. None of it response to OTC NSAIDS
- Itching – on my arms
- Motor Control – this was in my hands and forearms
- Numbness – hands and feet
- Acute Dizziness and Vertigo
- Loss of hearing – this happened half way in on my exacerbation when I was diagnosed. Almost deaf in my left ear, and very diminished ability in my right ear
- Location Specific Essential Tremor – this has become less severe but is still present
- Acute fatigue. This has happened a couple of times but not for a couple of months.
- Depression. I attribute to either a lesion or the Rebif because I am not upset about the MS, and its progression anymore.
- Do you converse with any other people with MS? What is the main focus with discussions?Yes. Those that communicate via email are typically those that are newly diagnosed, or their families, and have specific questions regarding their symptoms. The major interaction is through the blog where there are discussions regarding my symptoms, news items, or treatments on the horizon. Of course the atmosphere of my blog seems to be more of a support nature and so it is unusual that someone will disagree with me, which is too bad.
- Describe your feelings with MS? ( This is my most important question, as I want to bring into the science of my presentation the humanistic perspective….beyond the body into the heart and spirit)Mostly the MS has fallen into the background and just part of everyday life. The exacerbations can be frustrating as can be taking the Rebif. I don’t really have an emotional response to MS any longer, I must have gotten my catharsis all out with the really large exacerbation.
- What would be the most important piece of information you would like me to share at the seminar..There will be upwards to 40 medical professionals- nurses, therapists, social workers, and administrators and I will be inviting some staff from the MS Society.There seem to be two general responses to MS. There are those that take it in, make a few adjustments to their life, and just go on living. The others seem to think it is too much and never seem to cope with having the disease, regardless of the severity of the MS progression.
I think the worst part of having MS is the unknown. Since the pathology is so individual even within the same type of MS (e.g. relapsing-remitting) that can breed a lot of stress. I think injecting a placebo would be helpful, just for the thought that “something” is being done to help.
- If there are any other people or sources you know of to help me convey this perspective I would be most grateful. Any blog areas you know of Erik that may be helpful that I could tap into?There are other blogs that are listed on the right side of my blog, all of those people have been diagnosed with MS. You might also want to try the Usenet group alt.support.mult-sclerosis – though it has been a while since I have been there. I’ll also post these answers to my blog (http://blog.thesmithlife.com), maybe someone else will have some additional insight.
I just got off the phone with me dr. as I write this (4:40 pm). I have had a rash of new symptoms for a couple of months now. Some of the new stuff was MS Pain (I will go into more detail later), Itching (I will go into more detail later), and very recently foot numbness and leg weakness. The later is what I called the Dr. about. I asked his personal recommendation at this point and he said to wait a week and follow up with him to see how I was doing – this is probably because he knows me aversion to solu-medrol because of the bad attitude it gives me. He said after a week if it hasn’t gotten better then he’d probably prescribe oral high-dose Decadron. He said most studies indicate that it is just as effective as Solu-Medrol. He said if that didn’t work than he would recommend proceeding with Novatrone to nip it in the bud. I really don’t like the prospect of that – and told him as such – but I really don’t think it will come to that. He also said that the side effects to Novatrone are much better than Solu-Medrol. I told him whatever is necessary it is OK to proceed with.
He also expressed concern that I have had a couple of exacerbations back to back while on the Rebif. He countered by saying that who know what they would have been like on nothing. He said he would be eager to see the new MRI’s come July to see if there has been a lot of activity and then deciding what to do then. I certainly want a drug that works now because now is the time to control the symptoms to prevent disability.
We also went on to discuss my Zoloft dosage because while it has helped a ton I am still a little sensitive at times. It is much less frequent, much less severe, and I am able to keep it hidden. I asked him what I should expect from the Zoloft. He said that I am on a very low introductory dosage and most people are on 100mg to 200mg so he bumped me to 100mg. He said that since I tolerated 50mg so well I shouldn’t see any ill effects in moving to 100mg. He also offered to have his staff call in a prescription but I said I have plenty to double-up on until our next appointment when we can evaluate how well it is working.
Sorry for the length but I am already going to leave a ton out as I try my first year of the disease. I will probably do a couple of follow up posts on specific issues I have not covered in this.
My first exacerbation came in August of 2002 – though I did not realize it then and came in the form of numb feet. It started at my toes and moved back towards my heel. I lost some toe motor control but who really misses that? I had recently just gotten some new inserts for my flat feet so I blamed them that they pinched a nerve in my foot so a little after a month and no wearing the inserts it got a lot better. This was probably brought on by a period of extreme stress.
Fast forward to March of 2003 and once again I hit a much worse period of stress (obviously a massive trigger for me) caused by my wife being sick and needing surgery. At this point my right hand started losing sensation. I did not think much of it as it started with the right side of my right hand and got worse from there. I thought it was just a pinched nerve in my elbow that I was irritating in my sleep and so tried a couple of braces one that I bought and one that I made. I also tried to “help” the swelling compressing the nerve by taking Naproxin Sodium (Aleve) and Ibuprofin (Advil/Motrin) which of course did not help because it was not a pinched nerve. During this time it spread up my right arm and my left arm too and I was starting to lose motor control. After 6 weeks I went to a neurologist that my wife used to work for. My Nerve Conduction Velocity (NCV) and Electromyography (EMG) both of which came back extremely good for my age. Pretty bad was I was not able to touch my finger to my nose – I touched my forehead instead. I also had trouble touching my thumb to the tips of my finger. So I went for blood tests and a MRI. The MRI turned up the normal MS lesions in my brain and spinal cord. I also had a lumbar puncture (spinal tap) too which also indicated MS. On a side note I got a “mild” spinal headache for a couple of weeks after that LP procedure – I guess it could have been much worse.
Here is a little about the symptoms when it got to its worst – while it was bad it all got better! It impacted my ability to work because I had trouble typing (I am a Systems Administrator) and using the mouse. In fact at the end I could really only use my index finger of either hand and had to switch to using the mouse left handed because that hand was a little better. I also had to write left handed because it was no longer possible with my right hand. Eating got very difficult and I couldn’t cut anything. I could no longer button my dress shirts or dress pants of which my wife helped me (which I mean did it for me). I could hardly wipe my butt after going to the bathroom but managed to barely do that left handed. (While both hands work now I do still tend to wipe left handed 🙂 I also had significant troubles bathing and had a lot of trouble getting clean – mostly because I would drop the soap so many times. I also lost almost all hearing my my left ear (it sounded very metallic and otherwise hard to explain) and significant loss in the right ear.
I took IV Solumedrol (see a later post for details on the Solumedrol treatment) to get over these symptoms and Rebif (see a later post for details my experience with the injection) to keep the exacerbations at bay. I have had a couple of exacerbations since (see a later post for details on those) but they have been very minor in comparison. I also got a little depressed – though I didn’t see it as such right away – but am doing much better now taking Zoloft (see a later post for details on the depression).
As it stands now I am doing really well and have virtually no ill effects from prior exacerbations. All my hearing is back. I have 95% back in my right hand (sometimes better) and 100% back in my left hand. I can probably still type at 40 word per minute which is more than acceptable though my accuracy isn’t as good as it used to be – no big deal I just use the delete key more than I used to. 🙂 So far it has been true what they say that the first exacerbation is the worst (though I guess technically it was my 2nd but my first after diagnosis). I kinda wonder if mine went on so long this time from the stress of being diagnosed with MS and mostly the fear of what the future holds.