Mar 032005
 

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.


  1. How old were you when you first had symptoms?

26

  • 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.
Jan 162005
 

I noted to my wife earlier last week that my perpetual hand stiffness seemed to be getting better. I noticed it when I had to do some computer moves at work (not exactly my favorite task!) and my hands didn’t get very stiff. While they did proceed to get stiff again the next day, and when I got hot, there does seem to be an indication that they are slowly getting a little better.

On another positive note I cannot remember the last time that I had a hand tremor, and not just because my memory is so awful, it really has been a while. This must be because the lesion on my Cerebellum finally healed; just as I was about to give into the tremors being a permanent symptom.

Jun 262004
 

For those who are interested in the status of the exacerbation here we go:

 

  • Tremors: The past couple of days have been really good days for the tremors with virtually none. I did have some this morning after I got up but after noon I haven’t had any.
  • Burning in Legs: Has been virtually non-existent since Monday but there have been a couple of mild episodes. There was some this morning – as with all of these symptoms – which made me unhappy because I thought they were all coming back but then they went away in the afternoon
  • Leg Weakness: Again came back a little bit this morning but went away like the others. Otherwise has been gone at least since Monday.
  • Foot Numbness: Complicated symptom at best. Still don’t know whether to blame the MS or not since I had some bad arch pain which could be consistent with another cause – the joys of flat feet. It is much better than it was at its worst and like everything else is worst in the morning when I wake up. No wonder I’m not a morning person! 😉
May 262004
 

Right after the Solu-Medrol treatment I noticed that the numbness in my feet and my leg weakness were better. Not that I think the Solu-Medrol even remotely had enough time to work just that we are wrapping up this exacerbation on its own. It would be consistent with the pattern of a couple week exacerbation and then it goes away. At least I will hopefully be symptom free shortly (except for the steroid side effects) which is good.

May 232004
 

Today the leg weakness significantly increased when I woke up in the morning. Fortunately I have not had any problems walking yet. The numbness in my feet also got substantially worse this morning but leveled off later in the day to the numbness that I have been experiencing. I will call the neurologist in the morning to see about immediately going on some steroids to help. I am not sure that we will be able to begin the Solu-Medrol before I leave town for a week. If that is the case I’ll see about taking high dose oral Decadron. He should also have the results of the MRI tomorrow so he should have seen it by the time he calls me back.

May 182004
 

I am very happy to report that the weakness that I have been feeling in my legs appears to be gone. This happened suddenly (it always seems to be this way) late yesterday afternoon. I even took a long walk with my son and didn’t notice my legs at all which is a very good sign. My feet did feel a little more numb when I woke up but have since returned to their regular numbness.

May 172004
 

The weakness in my legs got a little worse on Friday but has held pretty steady since then. I don’t notice it if I just stand up but if I walk to the break room, bathroom, etc. I definitely notice it. The numbness in my feet may be getting a little better but at worst it is staying about the same. Phoned in my symptoms update at the same time as the tremors so we’ll see what the Dr. has to say – since this stuff isn’t critical I’ll probably hear back tomorrow during lunch.

May 082004
 

Living in Texas the heat is certainly a big concern – mostly for my wife it doesn’t concern me to much as long as we have air conditioning. 😉 While I have had a number of symptoms the only one that comes back when I get hot is my hands no surprise since that was the symptom from my worst exacerbation. And then it is still pretty minor because I still have control just a loss of sensation. I do take comfort in this because all of my symptoms do not come back (pain and numbness at other areas) and for my hands it’s not as bad as it was during the exacerbation. I do occasionally get hot cleaning the house and certainly mowing the grass but other than that I do pretty well staying cool. As soon as I get my body temperature back down all the symptoms disappear. I am very thankful that all of my symptoms don’t come back when I get hot otherwise that could get pretty unpleasant. 🙂

On a related note the AC at work isn’t functioning too well (they are out today, Friday, fixing it) but I moved 24 new HP computers yesterday (Thursday) which were still in their boxes and got quite hot. Mostly because I am out of shape from sitting in front of a computer all day 😉 but also because I was in business attire. My hands got numb but I grabbed a fan that I keep at my desk and a cold DP (I know I should have gotten some water) and felt better pretty quickly. Of course everyone stayed away because I stunk from all that sweat – fortunately it was the end of the work day! 🙂

May 022004
 

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.