Advice Needed!

[Agreeky]

Hello everybody. I have not posted in a very long time. I stopped looking for answers but I thought I would give it one more shot... Symptoms below..

Left hand and foot tingling for almost 3 years

Upper right foot numbess comes and goes

Night blindness (vision gets pixilated)

Facial numbness comes and goes

Heart rate jumps per standing also comes and goes

Breathing issues. Paper bag feeling left diaphragm hard to explain

Muscle fatigue

Abdominal pain

Muscle jerking

Sleep apnea

Vertigo that comes and goes

Hands swell up as well as feet

Eyes burn

I could go on and on. I have had multiple brain and neck MRIs. Hundreds of blood tests and CT scans. Evoked potential test,endoscope,colonoscopy, and breathing tests. Only thing founds was elavated ANA and very low viatamin D. Also possible obstruction per breathing test. Any alternative ideas please share!!! Thanks : )!

[Katybug]

Have you had a biopsy to check for peripheral or small fiber neuropathy?

[gjensen]

I agree with the above question. I would want a skin biopsy and a Qsart test.

[looneymom]

Check into neuropathy. This is a hard one to deal with because this is part of Tyler's condition. Check out the articles under the Trying Nemanda post. I would see if you could get checked for some neuroal autoimmune antibodies. A neurologist that knows about the Cunningham panel might be able to help you. These are also being found in adults. Get your glutamate and norepinephrine levels checked if possible. These can be connected to neuropathy problems. Tyler is also being checked for NMDAR antibodies. These antibodies have been found in patients that have a movement disorder without encephalities. Here is the abstract about the NMDAR antibodies. I can't get to the whole article but it might be something to show to your doctor. NMDAR has POTS symptoms and this was why our doctor decided that we needed to get Tyler checked for it. If your glutamate levels are too high it will miss up your nerve signaling. Tyler has had testing that showed very high glutamate and norepinephrine levels.

http://www.ncbi.nlm.nih.gov/pubmed/24127856

[Clb75]

Have you thought about Lupus or other autoimmune diseases? A high ANA can sometimes be associated with inflammation and an autoimmune process. Lupus can have a lot of different symptoms including neuropathy and heart problems.

[angelloz]

I had the mild obstruction show up on a lung function test...but nothing much was said about it. I have continual breathing problems as well. Also, an elevated ANA but the Mayo Clinic said it was not Lupus because more than one area of ANA would be elevated. Keep on looking! I keep thinking there will be a doctor that will keep searching for an answer.

[E Soskis]

I have autoimmune dysautonomia (AAG) and have experienced everything you describe. May want to look into the autoimmune aspect.

[Agreeky]

Thanks everybody, I am due to get a skin biopsy to check for small fiber neuropathy. I have thought about lupus but it has been ruled out. ESoskis how do I go about further autoimmune testing? I think my doc has run most tests she can think of. Looneymom thanks for all the info as well. I go to a dysautonomia neuro in Boston but she had never run these additional tests? Thank you all again..

[neubala]

I have a lot of those symptoms. I have been diagnosed with POTS as well as migraine equivalent. The migraine equivalent causes my numbness in my hands, feet, and face as well as a weird pain/feeling behind my eyes. I think my neuro also said it can cause vertigo, eye issues, and nausea.