A doc in neurology forum answered my post about heat intolerance

[Hope75]

So I posted about how I couldn't balance in the heat, b/c of the neuropathy in my feet and this is the answer I received, which always stresses me out:

by Dr Rajgopal, Sep 14, 2009 11:37PM
To: Hope75
Hi,
The symptoms of numbness and loss of sensation getting aggravated by heat suggest of Multiple sclerosis. Multiple sclerosis is a progressive demyelinating disease of the nerves. Do you have other symptoms like muscle weakness, dizziness, numbness and tingling all over the body? Please go for an MRI of the brain and spine and consult a neurologist to rule out the disease. A series of MRI and lumbar puncture may be advised to rule out the disease. Hope this helps you. Take care and regards!  


Well, I have had several MRIs and a lumbar puncture - one lesion, lumbar puncture negative.  My LLMD thinks my one lesion is from Lyme.  This just makes old ideas of MS boil up to the surface again!  I am getting so tired of this.

[Hope75]

I do believe its as patsy says, the constriction and dilation of blood vessels is impaired because my feet are ice cold but feel like they are burning.  My hands are usually cold as well.

I have had the lumbar puncture and several MRIs, no MS.  Just the one unchanged lesion. Its good to know that some have experienced improvement in their symptoms.  Its just difficult to get your mind off of MS.

I realize that heat intolerance equals that knee-jerk reaction of MS.  It's just classice.  Heat is not your friend if you have neuropathy for any reason, like diabetes.  Just needed to think that through.  thanks guys!

[wonko]

In your post to the neurology expert forum, did you include that you've been evaluated for MS (by, if memory recalls, the prominent John Hopkin's and perhaps also a neuro local to you?) in the past?  

My neuro was quick to tell me that MS was suspect given my issues, including heat intolerance.  But an unchanging pattern of non-specific white matter lesions and negative LP later, the concern was gone and I was given the 'ol "wait and see" and the vague and frustrating "well, maybe it's something like fibro."

For what it's worth, my heat intolerance has greatly improved with treatment.  At times, a hot shower would not only activate my many sensory symptoms, but would also blur my vision and literally wipe me out with fatigue.  Now, it can still enhance the tingling and maybe affect my vision in extreme cases, but is becoming less of an issue with ongoing abx treatment.

[skarey]

Don't feel alone Hope.  I too am still worried about MS.  I talked to my LLMD about it today and he said he was confident in his dx of Lyme, but that MS is a differential diagnosis.  So if I don't eventually respond to treatment, we could maybe pursue the MS thing again. My husbands brother has Primary Progressive MS, and my husband assures me that I don't have MS.  He says my symptoms don't act like his brothers,  

I get the numbness sensations, but not from heat. It's just there.  I think it's only natural to worry about it though.  It's so hard, cause there is no "for sure" dx/ test for lyme or MS.  So sometimes I think it's hard to differentiate the two.  

I'm feelin like **** today... dizzy, numbness in toes, weak, stiff sore neck and shoulders, and my tongue is burning, and my eyes feel gritty. UGHH!!!

I would say just try to put aside the MS thoughts (easier said than done), but really it's not going to help worrying about it.  You've had all the tests done for MS, and it reality everything points more to lyme in your case  IMO.  

Do you have vision problems?  My LLMD asked me this today...  I don't .. just the eye pain.

Hang in there.  It's a rollercoaster for sure.  Just try your lyme treatment and see where that takes you.

[patsy10]

Look up "autonomic neuropathy"  there are numerous links on it.   This is what I have.  The damage to the autonomic NS results in the vessels not constricting and dilating properly.  This causes heat and cold intolerance.  My hands and feet are like ice even in a warm room.  I get weak and have tingling, numb feelings when it is hot.  Don't know if this fits you but there is a lot of info. to read.

[patsy10]

I did a lot of reading on nervous system damage when I was trying to figure out what I had.  I read that ANY damage to nerve tissues regardless of the cause can lead to  problems with heat tolerance.  If I can find it I will post it.

If you are concerned about MS then you may want to consider seeing an MS specialist for an evaluation if you have not already.