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 Lyme, MS or ALS.
Thoughts?
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Hi and welcome to Lymenet! Please break up your posts into a couple lines at a time for easier reading for many here - thx - Robin123
[ 12-10-2014, 06:23 PM: Message edited by: Robin123 ]
Posted by surprise (Member # 34987) on :
I'm not really sure, but if you contact Igenex (can google it)
they can send you a Western Blot test (about $200.) it's a blood test kit and you will need to take it to a Dr. and get it signed,
then blood drawn and the kit sent back to Igenex. The Dr. who signed for the Igenex will be sent the results. Make sure you get a copy of those results.
You will be looking at any bands marked positive or IND on that test result- Best wishes-
Posted by Keebler (Member # 12673) on :
- To me, yes, it sounds like lyme should be considered. It may not be and there are other explanations to consider yet, it's just good not to disregard the possibility.
the gait and balance issue do sound like lyme must be considered. Lyme very often affects the inner ear and brain with balance / gait challenges -- and the spine issue you have does not explain all that balance / gait stuff.
So can other tick borne and chronic stealth infections.
The fact that certain symptoms migrate is also common to lyme.
Diabetes can be caused by lyme. While Type I, presumably diagnosed in your youth (?) . . . either lyme back then or some other infection could have been the cause / trigger.
Best to be fully assessed by a LL doctor who can help you sort this out.
Do sort out all your Rx, of course, as well as any packaged foods.
A gluten free diet could be a huge help, too. Gluten could be at the bottom of much of this, too. You might get a test for GENETIC CELIAC, A BLOOD TEST. -
[ 12-10-2014, 10:47 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by Keebler (Member # 12673) on :
- Aspartame? If it's in your life at all, that can cause all kinds of havoc. More detail:
I've had that cold spot sensation / pain that you describe - years ago. It could be nerve related, of course, and certainly glucose lows over the years can do as much damage as glucose highs. It's only been recently that doctors are taking note of damage low blood sugar can do.
Balance / Gait symptoms are discussed in this set below. Some very specific vestibular testing seems in order -- and lyme can cause a lot of trouble with the vestibular system as well as the brain functions that control gait.
Not all ear experts are as informed as they should be about the vestibular system, though. Not even close. And all scans are not equal, either.
There can be other causes of balance / gait issues as well (and some are discussed below), it's just that the vestibular system is where I was "hit" first and it took decades before it all came to light.
It's just good to be evaluated by someone who really knows about stealth infections and not just accept it as either from damage or unknown reasons.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by Keebler (Member # 12673) on :
- You say "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." (end quote)
I'm sorry to hear that. Do you know if steroids were used during / after surgery? They often are to help reduce swelling. Steroids can make lyme pop out / come back / blossom. But, other than lyme, there are various chronic stealth infections that a good LL doctor would consider.
Were you fatigued by the surgery?
Is fatigue an issue? I rather assume so as balance and gait matters can be exhausting. But, do you sense "undeserved" fatigue? While not for everyone, that often goes with lyme or other chronic stealth infections.
And I keep getting GLUTEN in my "ear" to reemphasize. Truly, gluten can cause issues in the brain and nerves. This would be the easiest answer of all, so you might consider this first and investigate that.
But many tests for celiac are not adequate. A blood test, a genetic blood test is best for starters. Beyond that, some gluten issues that may not be celiac could be involved. A few months on a gluten free diet may yield some nice surprises for you. -
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