Cold spots and unsteady gait

[ScottKB]

I am a 54 year old and 40 year type1 diabetic (no complications) who started having walking balance type issues a few years back.  My thyroid and other things were checked and all was OK.  About 6 months later, I started getting extremely cold burning spots (softball size) in the same spot on my right arm/elbow forearm and right calf.  The gait issues came and went during this time but are persistent now.  The doctor sent me to a neurologist who did physical therapy and ultimately an MRI (brain and spine with dye) which revealed pressure on the spine from the disc at C5/C6.  She stated that there was slight changes in the brain but didn't think it was MS but possibly related to extreme sugar lows experienced as a long term diabetic.  In the mean time, a warm spot developed on my left calf and numb spot on my left back shoulder.  All are still present today.  I ended up getting surgery done on my disc (successful according to surgeon and xrays) but my symptoms have not reduced.  In fact, they are worse now.  And, the cold spots and tingling are popping up briefly in new places every now and then and are still prevalent in the places mentioned above.  I don't seem to have any muscle weakness but I am having some thigh/leg pain.  I am now wondering if they missed something like MS or ALS.

Thoughts?

[ScottKB]

Alex,

Thanks for the feedback.  

I see the neurologists again in a few weeks for a post surgery follow up.  Its been about three months since surgery.  I have seen her three to four times over the last few years and she typically does the normal strength tests and various other tests and questioning. I assume she will do the same again this time.  Thus, I may get new ideas as to what is going on from her as a result of my post surgery symptoms really getting worse.  We have discussed possible diabetic neuropathy but my endocrinologists thinks I only have slight neuropathy from diabetes.  I will have to look into peripheral neuropathy.

Of course, the more you have something that goes undiagnosed or treated, the more you begin to worry and get anxiety.  Of course, anxiety exacerbates existing symptoms or creates new symptoms all its own.  Vicious circle...  

Thanks again for the feedback.

Scott  

[HVAC]

ALS is highly unlikely. It starts at the feet or hands and works its way up usually very quickly. My friend started with it the hands and it was super painful. With Diabetes comes nerve pain. Especially to the extremidies. Have they ever mentioned peripheral neuropathy? Also scar tissue from surgey can push on nerves and cause pain. I had abdominal surgery and have pain from the surgery.

You definitely have something going on. Are you still being followed by the neurologist? If he thought it might be MS he would check you at least every six months and repeat MRIs. They can tell more from a neurological exam in the office than from a MRI. They can pin point where in the nervous system you have nerve damage from the reflexes, etc. My PCP found my MS that way.


It can take years to be diagnosed with MS. You probably have something neurologically wrong. It does not scream MS to me but I am not a doctor.

Alex