Jan 172007
 

In response to Gwen’s post my exacerbation pre-dated the holidays. I am just a little slow to get to posting about the exacerbation, etc. (the exacerbation pre-dated Thanksgiving, and just being the 5 of us at home probably doesn’t count as holiday stress – just regular stress ;-). In fact the Solu-Medrol was completed weeks before Christmas. I also agree that many exacerbations just go away by themselves, most within a couple of days. This was not the case with the hands, and was the exact same track that led to the really bad exacerbation (from which there is residual damage). I did not want to risk any additional damage to the hands, and for the record I was recently re-tested and no carpel tunnel (nor any other tunnel problems in the arms) that would be causing residual problems.

Secondarily, does the cause of a significant exacerbation (holiday stress, etc.) matter other than for academic purposes. Regardless of the time of year, and surrounding circumstances I will treat hand problems aggressively. Conversely, pain, itching, balance, fatigue, dizziness/vertigo, numbness elsewhere, etc. will not be treated aggressively – and probably not treated at all (other than the normal routines). I think everyone needs to have thresholds with MS for exacerbations that are tolerable, and exacerbations that are not tolerable that will be treated aggressively. Some people may find walking problems to be more serious than I do, and treat those aggressively.

I’m curious, where do you work that you get 6 weeks of paid vacation (and are they hiring!)? (I get 4 weeks, but that is above average in my experience)

Jul 262006
 

The joys of life in Texas in July with some 107 (41.6 Celsius) degree days. Since I am being asked frequently, I am doing surprisingly well; even when mowing! 🙁 Typically I get stiff hands and/or dizziness when mowing, but those have been surprisingly absent. Maybe a sign that things are getting better. A positive side to the heat/sun is that I am probably getting a daily dose of vitamin D just walking to the car after work! 😉

May 042006
 

I’ve certainly had a long track record of dizziness, and it has resurfaced lately; especially while at work. Which makes me wonder is the latest episode of dizziness the MS, or is it the fumes from the painting, etc. during the remodeling at work. I’m beginning to suspect the fumes since my days have been going strangely better, and I am secretly hoping the remodeling goes slowly ;-). I guess all the benefits of abusing inhalants (including the loss of my precious gray matter – ignorance is bliss!) without the illegality. 😉

I’ve also had some pain in the balls of my feet (stiffness with pain) without any apparent cause. I originally was leaning towards it being the MS, but the pain was alleviated with Ibuprofen. I’ve never had any luck alleviating Multiple Sclerosis pain with NSAID’s which makes it less likely it is a lesion.

 

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.