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.
Feb 222005
 

I came across this article, Steroid Therapy Impairs Long-Term Memory, and certainly found it intersting, and yet a little depressing. On the other hand I certainly don’t begrudge the times I have taken Solu-Medrol. I need to pull the report in Neurology to see what it specifically says. Whatever the cause my memory, and cognitive, function definitely aren’t what they used to be. I had something else to say but I forgot. 😉

On a side note their comment in the end about “emotionally arousing information” was kinda a no duh! Personally, I’m too agitated about everything to think about anything else, is that what they are talking about? Furthermore, in my limited experience the Solu-Medrol bad attitude isn’t exactly a turn-on for the Mrs. either!

Jan 152005
 

There have been some comments to the blog that I have found interesting.

  • Sue posted about her Mannatech experience. Yes, this truly is the post of mine that is never going to die!
  • Anonymous posted that he has had good luck with Jolley Roger hard candy with the Solu-Medrol taste. While I am hopeful that I have taken my last dose of Solu-Medrol, I’m sure that isn’t the case; and I certainly hate the flavor in my mouth!
  • Kim chimes in on the Curry spice. Tumeric is what I’ve always heard should be taken for MS, but it is used in India so we know it must be good! Kim seems to confirm what I thought.
  • An anonymous post that their very first installment of Tysabri went very well. Hopefully anonymous will drop me an email and let me know how the treatment is working out.
  • MikeR wrote about the potential of taking Tysabri at home, but Biogen isn’t recommending that at the moment. Yes, I am interested if/when I start taking Tysabri; but why the heck aren’t they recommending home infusion, is there some danger with the infusion???

Well I guess these are the major highlights of recent comments on older posts.

Aug 032004
 

I have 3 more days of the tapering steroids but it is such a drop in dosage that I should be at my worst now as far as the side effects. Tradeoffs seems to be the word the comes to mind after this round as we are always looking to make some steps forward but my suspicion is we’ve taken more steps backwards than forwards. Every time I’m done with the Solu-Medrol I swear this is the last time I’m taking it because it is just too nasty of a drug – at least this cycle is done – maybe I can now maintain I won’t take it anymore unless it becomes critical. I really need to start seeing some benefits from the steroids because their cost in side effects is high and from what I’ve seen so far it just isn’t worth it. Here is the wrapup:

 

  • My vision got much more blurry today and is the worst it has been for this treatment. Assuming everything continues on as normal it could get a little worse before it gets better. Normal steroid garbage for me.
  • Ear Pain and Sore Throat are coming back which isn’t a complete surprise. The Biaxin made it better but I stopped right away because all of those drugs were just too much of a strain on the system. I did take another days worth of Biaxin a couple of days ago when the sore throat started to reappear and it helped but then it was still the same thing with too many drugs in the system. Fortunately I am able to tough this out with some Tylenol (which is working surprisingly well) and trying to take it easy. If I get too bad I’ll resume the antibiotics after the steroids have had a chance the clean out. I did go and lookup Biaxin and methylprednisolone (Solu-Medrol and my followup pills) have a potential contraindication though they didn’t specify what specifically it was. It is possible that is what happened to me. I would have hoped the family practice dr. would have at least checked that since he prescribed this medication because I was about to start the Solu-Medrol.
  • Tremors are still bad but are getting better. I’m sure it is going to take a while for all of these steroids to work their way out of the system and for them to get completely better.
  • The 40mg of Nexium isn’t cutting it either with me having pretty bad heart burn throughout the treatment. I doubled the dose with no effect and hobbled along with some Tums. I guess I am getting my calcium in for the month, year, eternity… 😉
  • Sleeping has gone pretty well but I can’t get enough. Once I eat I am ready to crash and if I’d go to bed then probably wouldn’t need any Ambien. The fact that the steroids make me get up 1-2 times per night is not helping me get the sleep I need.
  • The hungers officially hit a couple of days after the Solu-Medrol which isn’t all that unusual. Nothing sweet appeals to me at all – not that unusual – I just want protein. Unfortunately the everything tastes bad hit at the same time so it’s hard to get all that I want but I seem to be making due. Tomato products are the worst which eliminates what I would really like which is a hamburger with some ketchup. On the other hand I stuffed myself on some Mexican food the other day which was delicious.
  • Some hand stiffness started in the middle of the Solu-Medrol and is continuing to go pretty strong – though is showing signs of getting better. I heavily suspect that this is caused by dehydration and the Biaxin was probably the cause of some weird dehydration effect in me. If it is dehydration then it should be getting within a couple of days. Certainly one more data point that dehydration has a negative effect of my stiff hand symptom.
May 262004
 

I forgot to list a couple of side effects last night and trying to maintain good Blog etiquette I will not go back and update that post. (FYI: I ocassionaly go back and edit some grammer errors where I conveyed the wrong this or the spelling was wrong – sorry but it is my Blog so I can have bad manners 🙂 On a side note the taste in my mouth got much better this morning which isn’t unusual for me on the first dose. After the dose tonight it will take a week to work the taste out of my system. On the good side though it does tend to gradually get better rather than completely bad the entire time. I am probably still forgetting some of my side effects to the Solu-Medrol but as I experience them again I will Blog them. On a positive note I didn’t have to get up to urinate in the middle of the night but it will probably begin tonight – it has already picked up the pace during the day today! 🙁

 

  • Blurry Vision: This definitely caught me by surprise the first time and thought it was another exacerbation but it turns out it was the Solu-Medrol. I am already near sighted but can correct down to 20/15 but when it hits its worst (a day or two after the final dose of Solu-Medrol) everything beyond 15 to 20 feet is blurry and I couldn’t even think about driving. It takes about a week from it being at its worst to go back to normal/tolerable levels. My vision was blurry this morning but it was yesterday morning too before the steroids so I think that was tiredness. The eyes are still a little blurry but they will get much worse.
  • Heart racing or beating hard: I don’t know if it is actually doing these things but I can feel my heart beat in my chest much easier. I get my infusion at night after work so it is the worst right after the IV and then as I lay in bed (especially when I am on my back) but it is normally better the next morning.
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 122004
 

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.

May 032004
 

After being diagnosed I immediately got scheduled for in-patient IV Solumedrol 1g per day for three days. In the hospital they gave me .25g every six hours – I assume they did it at this rate to make sure I didn’t have any ill effects. The hospital was quite busy and I had trouble getting admitted so finally they just admitted me through the ER – so I spent the first night there. The next day I was moved to a very nice private room so no complaints there. It was boring being in the hospital but we snuck out a couple of times to get some food – although the food at this hospital was very good. I was told it could take a week or so to see the effects of this treatment but quite upsetting at the time since this treatment had no effect. My fear at the time was that I was going to be like this for the rest of my life – while it could have been a possibility it did get better. The other thing I found very upsetting was my vision getting very bad – I am naturally near sighted but it got much worse. In fact I could not functionally make anything out beyond 20 feet because it was too blurry. I thought this was more symptoms of this exacerbation since I was not warned by the doctor but is just turned out to be the Solumedrol. The blurry vision happened every time and seemed to peak a few days after my final dose and then took over a week after that to completely get better. I could not drive for a good portion of this because my vision was too blurry and would be too dangerous. The other symptom that I had this time was what they call a metallic taste in the mouth – I didn’t think it tasted like that but really have nothing else to describe it – this happened with every treatment of Solumedrol. Almost all food and beverages (especially water, Dr. Pepper, and Ketchup) tasted really bad (no wonder I lost weight) I did find that Sunkist Orange tasted OK so I switched to primarily drinking that for a while.

Since the first treatment “failed” and the dr. said that it can take a number of treatments to get the body into remission the next month I was scheduled for another 3g of Solumedrol. This time I got to get it at home by a home health nurse since I tolerated the first infusion so well. For the infusion at home they infused the days 1g all at once over an hour. The nurses were very nice and the infusion went very well. They offered to leave the IV line in constantly so I didn’t have to be re-stuck each day but I figured that the line would clog up and would need to be replaced anyway – plus injections don’t bother me that much. The good thing about this treatment was that I got to do it at night so I could continue to work and not use any more of my rapidly diminishing sick time. This time I got the normal symptoms of the steroid of blurry vision and a bad taste in my mouth but I also added the symptom of being very irritable. Almost everything really ticked me off – in fact almost every situation was a no-win situation for everyone. I felt the most remorse for my wife who ended up taking the brunt of all of my angst – fortunately for me she is exceptionally sweet and bore my irritability very well. The bad part again was the this treatment didn’t help with the symptoms at all. The dr. said that I was going to get 3 months of steroids (4 months total) to see if this would resolve. If it didn’t than I’d probably need to go and see Dr. Froman for chemotherapy. Fortunately it did not come to that.

I started Rebif right before my 3rd treatment of Solumedrol. It was this treatment that I started to feel a lot better. I credit that in large part to me having started taking Rebif. (Of course they say it can take a year for Rebif to start to work so maybe it was just having taken enough steroids) I was even more irritable this time but once again my wife took excellent care of me.

At first I did not think I needed my last dose but I got a little worse before this dose so it was very much welcomed. Afterwards I was really back to myself as far as all of my functions. The irritability this time was still bad but not as bad as it was the previous time – go figure. Hopefully I will never have to take Solumedrol again.

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.