Hello,

Two months ago, I awoke with a numbness in and around my mouth. It spread throughout my body during the day. Since then, I have been unable to taste anything (this is called ageusia). It is not a lessened taste, but a complete lack of taste that never goes away. Also, my entire body has been somewhat numb for the two months. It feels like novane wearing off... I can tell when something is touching my skin unless it is very fine, but the sensation is very, very desensitized (I can't think of another way to describe it - basically, I can't feel things on my skin the way they should).

My doctor thinks this is due to anxiety. I don't have any major pyschological issues. She agreed to refer me to a neurologist, but I can't see one for two months.

The only medication I take is synthroid for hypothyroidism, which I was diagnosed with last spring. My thryoid levels have been normal since April. I experienced this inability to taste and full body numbness in September. I took a tilt table test a few weeks ago for POTS (Postural Orthostatic Tachycardia Syndrome) and it came back positive.

To my knowledge, ageusia is not a symptom of POTS.

I am 28. It seems to me that a 28 year old having these symptoms could indicate something serious that needs treatment. There's nothing that I put into my body that could be causing this.

Has anyone ever heard of anything like this or have any ideas about this? Thank you very much.

--and apparent autonomic problems like that, one tends to think this is either a disease of the central nervous system, such as MS, or possibly a body wide peripheral neuropathy of autoimmune or toxic origin (or, somewhat less likely, a metabolic or nutritional origin).

This would likely be beyond the scope of the average neurologist as well--is it possible for you to get a referral to one at major teaching hospital or research center, at which there would be more testing possibilites? (I would hound my current doctors to do this.)

Hi. Thanks for your reply.

I could try to get a referral to Mayo clinic. My doctor might be able to get me into a neurologist where I live sooner, but if as you mention this is beyond the scope of a regular neurologist I may need to go to a larger hospital. The Mayo Clinic in Rochester is about three hours away. The problem will be getting the referral, paying for it all (I don't have good insurance), and also it will take a long time. But if you need to do this, you need to do this.

Do you know if MRIs can show body wide peripheral neuropathy of autoimmune or toxic origin? I know they can show MS. But are these things a neurologist would look for on his own, or should I come in with a list? I find doctors become difficult if you suggest anything to them...

When I was 26 I started feeling a menthol taste..it took two days but one morning my toung and lips went numb..by the end of the week I was completely numb on my right side...from the tops of my head (I had some deafness) down to my big flippin toe.

I was dxed with RRMS and have been on treatment since. I also suspect I have Celiac as well. Have you had MRIs?

I have not had MRIs yet. I was wondering if I should ask for one, or for a CT. I really don't understand the difference.

I can't get in to see a neurologist until January unfortunately

I'm finding doctors difficult to work with because what's wrong with me is difficult to figure out. I hope the neurologist can figure it out and I don't have to sit in the dark anymore.

MRI's are not going to show body wide neuropathy unless maybe there is a structural problems high in the cervical spine...but this would not likely cause sudden symptoms as you described.

BTW, they wouldn't typically order a tilt table for numbness, so what are your other symptoms that prompted docs to order that test? Are you passing out, have low BP or high heart rates?

You'd be surprised at the wide range of symptoms that go with autoimmune disease. We might be of more help if you shared your full list of symtpoms...as they might all be related.

Summer of 2010: Very suddenly starting having bad abdominal pains about 20 minutes after eating that would last a few hours. I could not find a specific kind or amount of food that made symptoms worse or go away. I also had diarrhea or else constipation maybe every other day. I had trouble sleeping on and off until Fall 2011. I also developed sudden eye irration. I could not open my eyes they would hurt so bad. I had to use a ton of eye drops for the first time ever. I previously had excellent vision, but after this I could no longer see the board from the back of the classroom. I had trouble seeing people's faces walking down the street. The eye irration ended after the summer, though. During that summer I worked for maybe 4 hours a day infront of a computer doing data entry, so I thought maybe it was just from that. My eyes no longer hurt and I see fine.

October of 2010: I went to urgent care one evening. I had a high fever, and was growing more lightheaded all day long. I felt too weak to do anything and felt very nauseous. The doctors said I had a virus (they couldn't identify it) that was causing my body to not retain fluids. They gave me about six bags of fluids and ice water. I went home and felt better in a couple of days.

After that, I started having a lot of fatigue. It didn't matter how much sleep I got. I was always run down. I was also having bad abdominal pains and diarrhea and constipation. I saw an internist who did a lot of tests. No celiac disease, no ulcers, no abomdinal cancer (he did a CT of the abdomin and couldn't find any abnormalities). He did find I had hypothyroidism. It has been corrected with levothyroxine since April according to lab tests. However, my symptoms weren't going away.

Summer 2011: I had such horrible fatigue I could hardly carry the laundry basket up the stairs. I would have to sit down and rest. It was like I had just run a marathon. Right before this I had ran on occassion and rode my bike multiple times a day. I was having trouble riding my bike due to fatigue. Sometimes I had to lay down to brush my teeth because I was so fatigued I could not stand. I had headaches, which is unusual for me. I had difficulty doing everyday things during this time due to fatigue.

Fall 2011: I saw an endrocrinologist to see if this was due to hypothryoidism even though it seemed to be corrected according to labs. He did not think it was a hormonal problem. He brought up POTS (Postural Orthostatic Tachycardia) when he noticed my heart rate increase upon standing. It seemed to discover this by accident. However, he said he did not know much about POTS. I was having difficulty sleeping. When I lay down in bed, my stomach or my legs would move (like a muscle spasm). This went away after a couple of weeks and I could sleep fine.

My abdominal pains went away around the time. Around the same time in September, I woke up and parts of my mouth felt numb. By the afternoon, the numbness had spread rapidly to my entire body. It has remained this way for two months. I also have not been able to taste anything in this time. It is not a decrease in taste, but a complete lack of taste.

The numbness feels like novacane wearing off. I can tell if something is touching my skin, but the sensation is greatly diminished.

Fall 2011: I saw a cardiologist to have a tilt table test for POTS. They weren't convinced I had POTS, but saw my heart rate went up in the doctor's office when I went from laying to standing. The tilt table test said my laying heart rate was 50-60, and standing was 90-120.

I have never fainted and my blood pressure does not change. My headaches have gone away. The fatigue is bad on some days and not on others. For the past two weeks I have not felt it much.

October 2010: Decided to see a neurologist, although I have to wait until January. No one has a clue what is going on.

So current symtoms:
-Heart rate increases by 30 to 60 bpm when moving from laying to standing
-Ageusia (complete inability to taste)
-Whole body numbness (can still feel some sensation. I'd say it's at least half of what it used to be)
-Fatigue that comes and goes and doesn't correlate with any kind of activity or amount of rest.

[QUOTE=en bloc;819091]MRI's are not going to show body wide neuropathy unless maybe there is a structural problems high in the cervical spine...but this would not likely cause sudden symptoms as you described.QUOTE]

Do you think a CT would be more appropriate? Thanks.

I agree with what Glenntaj said earlier...about neuropathy from an autoimmune or toxic origin. If you have not had any antibiotics or other meds before this happened, I would focus on the autoimmune diseases at this point.

The stomach pain after eating made me think of gastroparesis. It is yet another autonomic dysfunction (like POTS) that involves a decrease in stomach motility. Wide spread autonomic and peripheral neuropathy with a somewhat sudden onset could be autoimmune. The crippling fatigue is also right along with AI diseases.

I would suggest seeing a rheumatologist. Good luck and keep us posted.

BTW, the CT will not show nerve damage either unless there is a structural problem...and I really doubt that. The definitive test for small fiber neuropathy is a skin biopsy. Other nerve testing can include EMG and nerve conduction studies.

Thanks. It looks like I might have a long road ahead to figuring out what it is. Unfortunately I doubt my local hospital has rheumatologists that handle this. It looks like they handle arthritis. I'm not sure what to do, but I'll have to figure something out.