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Avatar universal

Tingling, Numbness, head pain loss of feeling

I really appreciate being able to read this forum and see that I am not alone. A year ago I started with severe cramping/tingling in my arms and legs (unable to walk at times).  Many different things have shown up over the last year from sight problems to numbness.
NOW: Severe cramping in legs, hands, arms.  Sharp pains in head especially around eyes, ears and temples. Feeling of being swollen.
Cannot stand to be cold, fingers get purple and throb.
Problems breathing (feel like someone is standing on my chest)
Difficutly swallowing.
I had a feeling that something was wrapping/travelling around my head.  This leaves numb areas.  I am numb around my eyes, forehead and through my jaw (if feels like when you are really cold and you cannot move your mouth).
Severe muscle pain in back, arms and legs.  The muscles get really hard to the touch.  Retaining a lot of fluid and gaining weight.  When I run my fingers down my arms and legs the muscles feel lumpy (maybe like a sausage with lumps in it).
I get the feeling of being overwhealmed and confused alot.  I will be in a grocery store and not be able to stand up, and get confused as to what I am there for. Frequent incontinence.
Testing to date:
MRI last spring-normal
Cervical spine-Feb02-normal
Evoke Potential-normal
EMG-3times normal
Blood tests: lupus (DNA string? thing this is right?)
ESR, ANA, Lyme serology, HIV, CA, MAG, Serum Lead, Mercury, Amylase, Protein, RF, plus all of the 'regular' stuff. Read about a rare neuromus. disease treated by antibiotics, but cant find now.

Looks like ALS or MS to me?  HELP PLS
15 Responses
Avatar universal
Doesn't look like ALS or MS as all of your extensive testing has been normal to date. However, 10% patients with MS do have a normal MRI although your symptoms do not sound like a typical case. One consideration is a mitochodrial disorder which can be diagnosed with muscle biopsy. Unlike many muscles disorders, this can present with a normal EMG. Other blood tests that look at muscle disorders include CK and aldolase, as well as thyroid testing. Talk to your docs about possibly getting a muscle biopsy for further evaluation.

The incontinence is also concerning. Make sure someone addresses this problem. EEG may also be helpful in making sure you're not having seizures when you become confused. Finally , consider going to a major academic or clinical center for a second opinion and a fresh look. GOod luck.
Avatar universal
If you find your answer ploease e-mail me. I have many of the same symptoms. Thanks.....***@****
Avatar universal
I'm no Dr. but my sister has MS and all your symptoms sound ominously like hers. You may get a lot of Drs who tell you you don't have it. Don't give up. Call the MS society in your area and get the names of Dr.s in your area who really know about MS instead of some flunky who never treats MS victims and therefore wouldn't know it if it bit him in the ***. Good luck and bright blessings.
Avatar universal
That is exactly what I have been thinking......all of the signs are there. I also have a friend with MS and he had much the same.  It is just a matter of convincing the doctors.  Unfortunately there are only 2 neuros in my area and getting referrals outside the area is next to impossible.

Thank you.  T
Avatar universal
I hope the Dr.'s can properly diagnose you.  I too, have had some problems, not as bad as yours, but I have been diagnosed with optical neuritis, which sometimes is an indicator of future MS.  Do you have any vision problems?  If so, ask your Dr. about testing for this.  And by any chance...are you originally from SD with a brother named Stacy? Let me know...
Avatar universal
I am from Ontario and have no brothers.  I have another appointment with the specialist on the 19th so I will ask him about this.

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