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Avatar universal

21 months neuro symptoms

I have had progressive neuro symptoms over the last 21 month and am still undiagnosed.  My symptoms now include left eye pain and spasm/ shaking.  Facial twitching.  Trouble focusing vision.  Weight loss and muscle loss.  Quivering of muscles.  Numb/buzzing feeling hands/feet especially in morning.  Left side worse.  Feels like electricity running thru hands/feet.  Hands look slightly wasted.  Feet twitch.  Action tremor hands/feet.  Aching neck.  Last MRI 8 months ago negative.  Emg 6 months ago negative.  Lp 10 months ago negative.  Lab work-up negative.  Where to go from here?
8 Responses
Avatar universal
Well, I don't know what sorts of things your labwork looked at, but first things on your list for your regular doc to check your blood for are these things:
thyroid panels (may send you to endocrinologist to check all hormones)
vitamin & mineral numbers
bacterial and viral infections (lyme, shingles, HIV, and others)
liver and kidney enzymes

Also, a review of your medications should be done by the same doc, including any statins and stomach acid meds, altho normally a stronger drug would do this.  You've alredy had an MRI and lumbar puncture, which would normally tell if you have MS or lupus, but further investigations of lupus should be done, which a regular doc can do some of those.  A connective tissue disorder or inflammation, even rheumatoid arthritis might be doing this, which the same doc can do some rudimentary clinical exams to see if he needs to send you to a rheumatologist.

And again, you should be referred to a neurologist so he can make sure you don't have some sort of palsy, or heaven forbid Parkinson's, or any possible spinal nerve contribution.

Now, I know many of the tests and disorders have probably been looked at already and eliminated, so take what you want and leave the rest.  And I am a layperson who did a little research to find out some of what I've put down here.  But at least you've got a list to sort of check off and go by.

While you wait to see a doctor, consider for relaxation purposes going for a couple visits with either a massage therapist or an acupuncturist or pressure point therapist.  Take some lingering hot baths, light some fragrant candles, bubbles of course, which will also relax you.  When you lay down on the couch or in bed, keep your legs bent, use a pillow to help you do this.  Do some easy brief stretching, bend over and reach for your toes and stay that way for a few seconds, which this helps the lower back and neck.  Stand on your tip-toes while holding onto a chair, stretch leg muscles forward and up, and also foot flat and pull calf muscles tight.  Put your arms up in the air and back down, making a fist in and out with your hands.

I have peripheral neuropathy, especially in my feet, so I rub them with my socks on and it helps quite a bit.  I am constantly rotating my hands and feet at the wrist and ankle.  When I prop my feet up or lay my arms up a ways, I put very soft flannel or a well-worn pillow-case or satin material for my feet or hands.  I just wanted to give you a few ideas of how to get yourself to where you might feel less stressed and uncomfortable, becaue stress can make all this worse.

Let us know how things go.  You are truly in a terrible situation, and I just hope it's something simple that can be corrected and you'll be better very soon.
Avatar universal
Will agree with ggreg in regards to the testing.  I am not sure if you have had all of things she mentioned ruled out.  
Avatar universal
Dear ggreg,

Thank you soo much for the thoughtful and comprehensive reply.  I truly appreciate all of your time and effort.  Unfortunately, all of the lab test you have suggested were done and normal.  I do have a very weakly positive ANA, but was seen by rheumatology and the rest of work-up was negative...I am not on any medications except recently started Neurontin for pain.  I will take your advice in regard to exercise/relaxation.  Thank you again.

Avatar universal
Do you eat anything with artificial sweetener? If you do you might see if removing that from your diet (I cannot even chew 1/2 piece of sugarless gum w/o getting a migraine).

Artificial sweeteners. These replace refined sugars, because they can provide the same sweetness as sugar—without the calories. Although they may sound reasonable, artificial sweeteners can trigger an array of neurological symptoms, and can, in many cases, aggravate a chronic condition.

There are six low-calorie artificial sweeteners currently approved by the FDA for use in the United States. These are acesulfame potassium (Ace-K), aspartame, neotame, saccharin, sucralose, and tagatose.2 Brand names include Splenda®, Nutrasweet®, Sweet’N Low®, and Equal®.

Artificial sweeteners are considered excitotoxins—chemical substances that can damage neurons in the brain. Health complaints regarding consumption of artificial sweeteners can include: headaches, migraines, seizures3, panic attacks, depression, bipolar disorder, memory problems, and other mental symptoms.4

Recent research also suggests that artificial sweeteners trick the body to associate sweetness with zero calories. As a result, cravings for “real sugar” go up, and there’s a tendency to overeat the “real stuff” since the body no longer has a mechanism in place to associate sugar with a sense of feeling full.5 So, you may be defeating the purpose of eating fewer calories by replacing real sugar with artificial sweeteners.

Also believe it or not but fluoride can cause neurological symptoms:

Also what were the results of your thyroid tests? Just because it says in range does not mean a thing. My thyroid doctor looks at ratios and plus he likes to have my TSH under 1.0. When they checked your thyroid did they checker your free T3 and thyroid anitbodies? Did anyone check your Vit D and B12 levels. My doctor likes my vit d around 60 even thought the range starts at 32-- he will tell you that is way too low. Vit B12 range starts at  250 yet my friends neurologist told her that she has patients with B12 in 500's that have neurological symptoms.

Has anyone looked into magnesium deficiency:

Lastly has anyone looked into Celiacs disease? Researchers are finding that many times it first shows up with neurological symptoms before the GI symptoms.

I hope this helps,
Avatar universal
Dear achilles2,

Thank you for your reply.  No sweeteners.  Magnesium normal.  Vit D and B 12 were low normal. Taking supplements. Celiac labs were normal.

Thanks again,

Avatar universal
I forgot to tell you that even if Celiac labs are normal the best way to tell if you are reacting to the gluten is to take it totally out of your diet for 10 days. Keep track of how to feel and then on the 11th day eat as much gluten as you can and then see how to feel. They are finding that the labs are not sensitive enough to catch many cases of Celiacs.

I hope you find answers it stinks when you cannot,

Avatar universal
Pretend labs do not exist. Treat the symptoms. 1st do no harm. Iat cannot hurt you to go on a gluten free, milk free diet for a month. My brain fog is worsened by gluten, dairy, msg, artificial anything. Tingling,, etc. try a chiropractor! Exercise in a warm pool, floating weightless can help any issue.
Avatar universal
did you have a real bad viral flu or other virus attack prior to your sx?
I have had post viral neuropathy (for about 21 months also).. preceeded by an outbreak of ocular herpes. I am going in for more testing this summer but my testing so far has yielded nothing solid. I did have a remission last summer of sorts.
Good luck..to all of us!
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