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?


  • 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 – though it has been a while since I have been there. I’ll also post these answers to my blog (, maybe someone else will have some additional insight.

  4 Responses to “Response to RN”

  1. I sent this off after the initial note per Brandy’s suggestion that I clarify further:

    My wife feels like like I should add on to #6:

    A day doesn’t go by that I don’t think about the MS, and not just because I am blogging. I notice a difference in my hands every day since they never really fully recovered. I don’t wonder about the future too much anymore because, just like anyone, I have no idea what it holds so I just take it one day at a time. I cannot emphasize enough how badly I took it during the diagnosis, because I was very much afraid of not being able to provide for my family, etc. The fear because of the uncertainty, especially with the poor performance with Solu-Medrol initially, a day didn’t go by for quite some time that there weren’t quite a few tears. In fact that whole first year was really bad. I don’t know if my attitude during the first year was worse than the average MS’er, but the other bloggers I’ve met online are doing far better then I did on their first year. Even after getting though the first exacerbation I quickly had quite a few more, which was upsetting too, though not quite so severe. Even my hands getting more stiff when I got hot was really upsetting. It is only in this last year that I have come to an acceptance level and it has emotionally gone more into a background type state. This is at least partially due, I am certain, because I have not had a major exacerbation that has impacted me in any significant way.

    I hope this was a little more helpful.

  2. I agree with your response to #7, and it doesn’t seem to be particularly related to level of disability or symptoms (although it’s hard to tell, cause on the Internet nobody knows you’re a dog). I feel bad that sometimes my best response to someone who is really suffering is “Stop obsessing, and get a life! MS isn’t everything!”

  3. I guess I should also add another thing that helps me to be OK. I knew “a lot” about the assistive devices for people who needed help getting around but didn’t know much about devices if you couldn’t use your hands. Since my big exacerbation was of my hands that has left a big impression on me since I knew of no devices that would help me with that impairment. Since then I have always kept my eyes out for things that would help, and while I don’t remember all of them by name, there are quite a few out there; which gives me a lot of peace of mind. I have no problem using any assitive device, I just wanted to know that they were available.

  4. Katja,
    I completely agree, like usual. 😉 While MS, and the blog, certainly get a lot of my attention it is certainly not my life. I didn’t like the cliché at first: “I have MS, but MS doesn’t have me.” But I’ve now seen that MS does indeed have some people. Sad, and so unnecessary; but apparently a choice that was made.

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