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ScottKB

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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, cold spots, tingling, tremors, and single twitches are popping up briefly in new places every now and then. In addition, all of my symptoms (cold/warm spots, gait, etc.) 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 ALS.

I must admit that I am getting a little anxious lately due to the symptoms which probably heightens or adds to my symptoms.

Any advice would be helpful.

Thanks!
 

Nikki J

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ALS is all about weakness. Your symptoms sound sensory which is not the big thing in ALS. ALS pain when it comes is later in the disease and either secondary to the extreme weakness that make the muscles unable to support structures possibly and occasionally when the motor nerve disease is advanced it can affect the feeling nerves too. This is not the case at onset. Did you read the sticky? It is right there when you clicked on New Thread to start this. It said please read before posting.
Please consult your doctors again but ALS should not be on your radar. Are you sure this is unconnected to your long history of diabetes?
 

Atsugi

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Scott, I have good news. You're going to live.

At least, you didn't mention ANYTHING that applies to ALS.

I know ALS fairly well, but I'm not a doctor so I can't say what you might have. But it sure doesn't sound at all like ALS.

You might try getting a second doctor to try to lock down a diagnosis. (And sometimes, they can't diagnose you, but they treat the symptoms instead.)

Anyway, good luck so far. You don't have ALS.
 

frankb

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Off topic, but thanks Nikki J and Atsugi for sharing your sage advice over these months and years, specially for newcomers.
 

Atsugi

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Thanks, Frank.
 

lgelb

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Scott,

It may be a while if ever to nail down a cause. Long-term Type 1 can certainly cause nerve damage in its own right that could cause all the sx you describe. But I would certainly monitor your electrolytes and maybe take another look at your diet/supplements with a clinical nutritionist and/or herbalist. A low dose of something like gabapentin might also be worth a try.

So I would focus on what could make you feel better -- warm water aquatherapy, walking, massage, maybe something like Pilates, or the Esmonde exercise programs originally aired on PBS, that involve slow, static stretches. Maybe also re-evaluate your bed/mattress, add an overlay or change your pillow to a better one, and if you are getting cold at night, add a low-voltage mattress pad. Sunshine is good, too, if you have access to it:)

In short, I would proceed under the assumption that you have diabetic neuropathy until proven otherwise.
 

ScottKB

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Thanks for the replies. I appreciate the constructive feedback. I guess I am no different than many posts I have read on here. The longer you go undiagnosed, the more you worry (and use Dr Google), which creates anxiety which makes symptoms worse. Vicious circle.

I do seem to be getting worse though. In addition to my my gait, thermal spots, and pain symptoms, I now have this clumsiness to doing things now. I think I am having some weakness in general, perhaps a little more on my left side, but it could be due to inactivity due to the symptoms I mention.

I guess the symptoms that point away from ALS are the early symptoms of strong cold/warm sensations, no real initial weakness, which I understand are not typical ALS symptoms as it can start with lack of confidence in gait but it usually is associated with weakness. Sensory symptoms come much later (although i have found no reference to thermal) in the disease.

I will just hang in there and try not to get anxious. In addition, continue to push the doctors, potentially alternate opinions, for answers.

Thanks again.
 

skipper66

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I just want to chime in Scott that I'm sorry you are having any health issues at all. I hope they find out what is going on soon for you and they are able to at least treat the symptoms. Take care, Kim
 

ScottKB

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I thought I would provide an update on my situation.

Because my symptoms were persisting and getting worse, especially the shoulder blade numbness/pain with fasciculation's in the left arm. I decided to return to the neurologist. She performed another MRI and Cat Scan with dye which indicated that the C5/C6 artificial disc was placed correctly. She performed some basic neuro tests again; strength, reflex, walking, toe standing, Babinski, etc., and ultimately stated that I have slightly elevated reflex on the right knee (with no reverberations), but other than that, everything seemed OK. She thinks that I am still recovering from surgery and that my symptoms are normal for someone diagnosed with Cervical Spondylitis w/Myelopathy.

As stated many times in these forums, you must trust your doctors. Although I have made myself a wreck with my symptoms, I am going to try and trust that advice.
 
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