HELP! MS symptoms only appear in hot weather

[Vikingquest]

Hi there,

I've been having strange symptoms for a few years and would be really grateful if someone could tell me what the doctors are confused about!! They have of course mentioned MS.

I'm 28 yrs old. It started about 2 years ago with blue dots and grid-like flickers in my vision on and off. This then progressed to having tingling sensations in my arms and legs only when it's hot outside. I don't get them in the bath or shower (which is strange) only in hot humid sunlight. As soon as my arms or legs become hot i feel this burning/tingling feeling, especially if i'm wearing trousers, my legs go crazy tingling.

So in the winter months of the year, I have zero symptoms of MS.

I guess I'm asking, does this sound like MS to you?

Any help will be amazing.


V

[civickiller]

i would suggest going to see a Upper Cervical Care Dr. to see if you could benefit from this kind of care

[flora68]

Wow. At first I assumed you were experiencing some atypical MS symptoms, but after reading your post more carefully, I don't think it is MS. But whatever it is, it sounds rare and like a real challenge for a diagnostician.

What kind(s) of physician(s) have you seen about this?

What if any testing has been done?

[Vikingquest]

flora68:

Thanks for your response.

Well, I went to my doctor who gave me information on MS, and said it could be MS, but that I should wait until more significant symptoms appear. I live in the UK, so the NHS will not stump up for an MRI until there is a good reason for it, ie. a real exacerbation. I have not had an exacerbation, all I have had are visual symptoms (including scotomas when I get hot) and this tingling sensation when I get hot. It's very strange. As I say, I can have a hot bath or a hot shower, but as soon as I'm experiencing a hot day, the symptoms appear... As it's cooling down now and entering autumn, I'll be surprised if I experience much more of it, and will probably begin to forget about it until next summer rolls around.

I have done a lot of research about MS, and at best I can only come to the conclusion that I have very unique benign MS symptoms which are atypical, and have so far avoided any of the more serious ones. No doctor on earth would diagnose me with any certainty as having MS with only these symptoms... so I'm stuck and have to wait until something else happens. I have had this for 2 years, although it has got worse over time.

I have tried to look for other answers, but none have come. I guess I could have lesions which are not MS, but still lesions on my brain?

[jimmylegs]

sorry to hear about your unpleasant experiences, VQ.

question: have you done any reading about SLE, vitamin d3 deficiency, and photosensitivity? FYI:

Vitamin D deficiency in systemic lupus erythematosus
http://www.sciencedirect.com/science/ar ... 7205000935

...We compared serum 25-hydroxyvitamin D (25(OH)D) levels between recently diagnosed SLE cases and matched controls... We found a trend toward lower 25(OH)D levels in cases [123] compared to controls [240], which was statistically significant in Caucasians (p = 0.04), controlling for age, sex, season, and smoking... Critically low vitamin D levels (< 10 ng/ml) were found in 22 of the SLE cases, with presence of renal disease being the strongest predictor (OR 13.3, p < 0.01) followed by photosensitivity (OR 12.9, p < 0.01). These results suggest vitamin D deficiency as a possible risk factor for SLE and provide guidance for future studies looking at a potential role of vitamin D in the prevention and/or treatment of SLE.

[Vikingquest]

Jimmylegs, that's very interesting, although it doesn't explain my utoffs symptoms and visual abnormalities... It's like a combination of ms and systemic lupus!

[jimmylegs]

just a though re photosensitivity.

vq if you do strenuous exercise in winter, can you cause your symptoms to occur?

[maynaka]

VQ,

This may sound like a stupid question, but I'm not familiar with NHS policies.

Are you able to get a MRI without it being ordered by the NHS or is it cost prohibitive to do so? Could a neuro order it under the guise of "probable ms"?

M