Still wondering

[chalknpens]

I just read another thread where someone spoke of having a flair ... heat related fatigue, etc... I thought heat related anything was not consider a flair, just heat related symptoms.

I remain confused as to what a flair is or is not. I have had heat related double vision (6 days, two years ago, never since) and heat related fatigue and dizziness, and heat related back pain, and clumsiness, etc.

If I were to call the neurologist, he would tell me to call my general doctor or eye doctor for those heat related symptoms ... he never mentions the medications that I read about on these boards (and perhaps that is because he knows I am reluctant to take medications that are only temporarily needed...)

I still wonder if this is truly MS (benign) or early stage Parkinson's, which i expected given my family history.

I'll pursue the question again when I see him later this year. But he'll remind me that the lesions are real, the O-bands are real, and the come and go nature of these symptoms indicate RRMS. But I think it's Parkinson's ... and I still don't know what would constitute a real, not heat related, flare. Perhaps, if lucky still, I never will.

The injections are still burning, after three years... what if they are for the wrong disease?

[pageturner]

heat

My understanding of a flare vs. just temporary heat-related is that is the underlying problem (heat in this case) is removed, then the MS symptoms resolve.

So in other words, you exercise, you overheat, the MS symptoms appear or worsen (tingling, weakness etc). You cool down and then improve.

So these episodes, if you like, could be called pseudo-flares. A temperature (as in flu) could cause one of these pseudo flares.

My understanding is that suspicion of flares are symptoms (new or old) that last over 24 hours and with no other underlying problem present. Mini flares, major flares etc.

My neuro has also never brought up the meds I hear about here. The one exception to that is provigil when I asked about fatigue meds about 4 months after DX. I decided to live with the fatigue and not take the meds.

I don't know that much about parkinson's, but don't the MRIs appear normal?

I don't really buy that benign MS stuff. One of the Iran hostages was DX with benign MS and he died at age 51. I think a better way of looking at it is disease aggression. And of course some of that can only be labelled in hindsight or years down the road.

[Maxx]

more heat commentary

1. Chalk is your neuro an ms specialist ? That may explain why no mention of ms medications. What ms med are you doing? There are a lot of things you can do to minimize shot reactions

2. Page,your comments are execellent.

3. About me. I am 72 and was dxed long before any ms meds existed(age 33, in 1972) I was fortunate in that I had a very sage neuro who posessed a long forgotten trait...he LISTENED to his patients description of symptoms. And consequently accurately diagnosed my ms in 1972, long before the advent of mri's.

4. I have always ascribed to the notion that if it walks like a duck, quacks like a duck, it is quite likely a member of the duck species. So in my view your symptoms lean more toward ms than Parkinsons. Admittedly I am clueless regarding Parkinsons.

5. Chalk, my 38 year experience with ms has shown that heat eventually becomes a terrible enemy of most people with ms and fatigue is not far behind. Tis certainly the case in my world.

Here's hoping all the posters get to experience the joys of being 72...trust me you don't want a list of everything that doesn't work as well as when you were 21. Such as coherent typing of this post (I wore out the back button)

Life was good at 21 and life is still good now !

Maxx..

[pageturner]

Maxx

Hello Maxx. Nice to meet you and your positive attitude. You hit the nail on the head. Heat and fatigue are the biggest things I (variably) struggle with on a daily basis.

[Phopp]

I am new and when i hear about heat related problems, I am wondering if I haven't had this for years??? When I would get overheated, I would get dizzy, slightly nauseous, sweat profusely, get weak and feel faint. I would have to sit on the floor with a fan blowing on me and using a soaking wet wash cloth to cool me down. It took about 45 minutes but then I would start perking up a bit. The rest of the day was spent taking it easy because I would still be weak. Could I have been having MS episodes for the last 10 -15 years and not know it? I tended to blow stuff like that off with some excuse or another....

[getoutside]

I was going to post a question about flares too when I saw this thread. I am in the midst of what I think is a flare after reading the above responses. I think it was brought on by a number of things...stress, overactivity, etc. Because it has lasted a week, it isn't a temporary heat related thing.

I am experiencing the overwhelming fatigue, but, this is the first time I have felt slightly nauseous throughout the day and I have a "I hit my funny bone" feeling running through my left arm that I've never had before.

I guess I am just wondering if nausea is common with MS fatigue or is this something else? Sounds like a few other have the nausea...I just never had it before and was concerned.

Have a great weekend everyone!