Unusual symptoms

[sharon123]

I have had unusual symptoms going on for almost two years now. First I had pins and needles sensations widespread over my body and occasional muscle twitching and after a few weeks it went away. A few months later the sensations and muscle twitching came back with some other symptoms such as ears ringing, lower back pain, hamstring muscle cramps, some bladder incontinence, and a general shaky feeling. I visited a neurologist because of a concern that it might be MS or something else and had an MRI and general exam. The Dr. said the MRI came back clear and my exam was normal. She felt MS was not a possibility because my symptoms were widespread and it doesn't usually appear like that. True? I was recently diagnosed hypothyroid and she felt that it was probably all related to my thyroid disorder. I have been on medication for a few months and still have these symptoms off and on. Do you have any advice? Thanks for your time.

[Rody]

Wow,

How is it possible that so many people, including myself, have these weird symptoms with only a few doctors recognizing them?

If I talk to my docs, I don't see any sign of recognition in their eyes! How is it possible no health center exists for undiagnozed diseases? Probably a commercial reason?

I have so many weird neuro symptoms but mine are aggrevated by simple triggers. I can not lift anything heavier than 500 gram or an instant outbreak of symptoms occurs. Same happens when my nail hits something. When I gently rub the skull's skin my spine is paralized for a few seconds and my eyes become very sensitive to light. They become painful with preasure behind them. THIS TRIGGER IS SOMETHING UNIQUE I never saw any post mentioning this.

My GP believes it is all because of the psyche and sent me to a shrink and grouptherapy for people with unexplained pain. Th therapy is almost finished and din't help me. What the hell am I doing at the shrink? I am sure it is nothing psychological. The symptoms just drive me crazy.

My neurologists honestly told me that they can not explain and diagnoze every problem. None of them suggested my psyche to be the cause.

I suppose we still no just a little about the human body and have to hope that a new generation wil have more answers.

I had to laugh a lot while reading michael's mail. He's right. However, do not give up to find an answer since your disease may be progressive (mine is). It becomes much harder to invest energy in looking for the cause if your general condition becomes even worse!

All the best to everyone.

Rody

[jojoinpain]

Wow, reading these posts were the first time I actually felt someone understood exactly what kind of pain I am in. Even talking to the Dr. and Chiropractor, I felt like. I don't know if they understand what I'm talking about. They kept refering to lower back pain, but my back doesn't hurt. Maybe a little in my extreme lower back and hips but..My behind hurts!! the back of my left thigh hurts and is numb! I don't know exactly when or how this happened but at first it wasnt' numb (about 2 or 3 wks ago, but I had discomfort sitting in the back of my thighs, both of them, but I could walk it out. As long as I was standing or walking I was fine, but sitting (OH LORD!!) laying wasn't all that great either but not real bad. Then one day, I layed down on my back and fell asleep, when I woke up, I couldnt even move or lift my head. I ended up in the emergency room and they gave me shots and I've been going to the Dr & Chiropractor every since, I was layed up for about a week and went back to work last week. It's better in that I can sit down now and I use ice and take relafen and soma. the Chiropractor uses something like and tins unit(sp) and that helps.  What I'd like to know is, is the numbness a part of it? How long does this last and what can I do to get over it. Am I messed up for life?  jojo

[ditter]

Wow, so many of us in limbo!  Eleven years ago, I had numbness and tingling in my right leg, muscle twitches at rest, night sweats and frequent urination at night.  GP sent me to neuro who gave me an MRI--looking for MS.  I thought I had a pinched nerve or something.  Well, MRI was normal and doc said I seemed depressed and offered the name of a good psychiatrist.  I told him to stuff it.  Yeah, I was depressed, but depression did not cause symptoms, symptoms caused depression--discomfort, restlessness and lack of sleep!  I told my husband it would go away or kill me, but I would not go through someone accusing me of being a hypochondriac again.  So, I learned to live with it.  I was 28 yrs old.  At age 34, I became pregnant, had a hell of time.  Both hands went numb at about 7 months.  OB/GYN said it was probably carpal tunnel and that the feeling probably would not come back until after the baby was born and the swelling was gone.  He was right.  Took almost 2 months.  My husband bathed and carried the baby (who is the most precious 3 1/2 yr old God ever sent to earth) all during that time because I was afraid I would drop him.  My hands ached and the knuckles swelled (looked like arthritis to me) and turned red.  Pain in my hands, wrists, shoulders and muscles in my neck finally forced me to go to a new GP (haven't been to the doctor, besides OB/GYN in 11 yrs) and tell him I wanted my carpal tunnel fixed.  Well, guess what?  No carpal tunnel, nothing visible in Xrays or bloodwork, although by looking at my hands, there is obviously something going on, even the doc said so.  He sent me to an ortho, had nerve conductivity tests which were fine.  Said I had hyper reflexes in my legs. Said I may have an auto-immune disease and sent me on to a rheumi.  Rheumi looked at all the blood tests and xrays and said my symptoms were not related.  Said I had bad rotator cuffs, degenerative arthritis in my hands, and strained muscles in my neck and shoulder.  Oh well,..Meanwhile I still have night sweats and muscle twitches, ears ringing and eardrum twitching every frickin' day of my life, plus in low light, I now have a spot in front of my right eye, can't see anything. During the day, it's not there or un-noticeable. Well, the rheumi sent me for physical therapy which helps some, but the therapist is scratching her head 'cause nothing is improving--I go twice per week and faithfully do the excercises at home.  At this point, I am willing to do anything to stop the pain and aching.  Now my knees hurt, the doc says I have some kind of disorder that the knee cap hangs instead of floats. Causes a burning aching pain all around the front of the knee, excruciating climbing stairs sometimes, but not always.  Twitching in my arms below tri-ceps driving me insane.  PT put anti-inflammatory patch on yesterday--I had pain and tenderness in thoracic spine T-4.  Muscles in neck and shoulders feel some better today, as well as less pain in the spine.  PT keeps asking about the tests I had done, she said she can't believe it's not systemic.  I can't either.  I am on no medication, other than anti-inflammatory.  I really don't know how much longer I can take this without muscle relaxers or pain medication.  It is consuming my life at this point.  I have so many wonderful things going on in my life right now, and I hurt too bad to enjoy any of it.  Sorry I took up so much space..I've been holding this in for 11 yrs, you understand.  Anybody had the eardrum fluttering thing?  It happens at night just as I am drifting off, or sometimes it is triggered by the sound of running water or unfortunately, my husband's snoring.  I have had to move into another bedroom because of it.

[Sandy200234]

Hi all,

While I have some of the same symptoms as far as right sided weakness, right foot drop, incoordination.  I also have Bladder retention, loss of peripheral vision on right side, slurred speech, cognitive problems, severe headaches.

It took me 4 years ... many doctors and tests before diagnosis.
I have Lupus which caused central nervous system vasculitis

I know it's easy to get discouraged but some of these illnesses are extremely rare and tests to diagnose are extremly invasive. In my case it took a brain biopsy and a staff of neurologists and rhuemetologists.

Some tests that are less invasive and very useful were the SPEC scan (blood flow within the brain)
and PET scan (shows how the brain is utilizing glucose)....glucose is food for the cells (brain synapse) and if it shows areas with Zero or decreased glucose uptake, they know that is a problem area.

Very best of luc in your search for answers,
Sandy
P.S.  if you would like more info on central nervous system vasculitis.   www.cnsv.net

[mamacat]

I was interested in the comments I read.  I had a major EBV infection back in 1991 and was incapacitated completely (couldn't even go to the bathroom by myself) for several months.  It took 5 years to feel half-way normal.  I had severe neurological damage, in my left side, the shakes, twitching, and seizures.  In 1997, I was bombarded with severe ringing in the ears (tinnitis) and hypercussis (hyper sound) and buzzing, static, and clicking.  No specialists have been able to help me.  I have ordered homeopathic stuff from Africa, and am on several different vitamins, herbs and minerals that have been recommended for this.  I am a nervous wreck, because I hear these sounds all night and all day, naturally affecting my sleep and feeling of well-being.  I have a sneaking suspicion that much of this has worsened over the past several months because my 13 year old daughter was diagnosed with liver cancer, and we've been living a nightmare with this.  I believe that any time you have a trauma or great stress, those old post-EBV side-effects can be reactivated to a great degree.  I'm hoping (and praying) that as we get through this trial in our lives that everything will calm down.  I have great compassion for those who suffer from the effects of EBV, as it lasts a lifetime.  Any comments?

[AtWitsEnd]

I have had all the symptoms noted in the posts above. I HAVE been diagnosed with MS. I was diagnosed about 2 1/2 years ago.
I went on with these symptoms (all the ones all of you described) for probably 2 or 3 years (being called a hypocondriac (spelling?). Finally was diagnosed when I had a blind spot in my eye. That is when they did the MRI and found the plaques on my brain. Sorry may not use all the right terminology.
I am currently having a lot of problems with the tingling in hands and feet and numbness. My Neuro sent me to a plastic surgeon to take care of the carpal tunnel he says I have. (and boy do I) but now my plastic surgeon says I need to consult with a vasticular surgeon.. that I am having problems with circulation also.
When I do anything with my arms up high.. they go numb.
I have anxiety attacks (well my dr calls them that) and I take Paxil for that.. it causes extreme headaches and I am trying to get on something different.
I have taken Nuerotin for the pain in my joints and muscles but it made me convulse. The original drug they gave me for my MS (Avonex) caused me to sieze. I am now on Copaxone. Daily injection.
Things change every single day.. new symptoms new feelings.
I know that it sucks to have something and you dont know what it is... and it is a relief when you find out that it actually is something.. and you arent crazy after all... but for all of you out there that have not been diagnosed with MS.. I hope for your sake its something a little less cruel... Ms to me is a cruel disease... it lets you think everything is going to be ok.. then bam.. something new... some get sick.. some never do... its just a very unfair disease.
Blessings to you all and I hope you all become well.
Oh by the way.. I also have Hypothyroidism. (take levoxil for that)And acid reflux... bowel problems and its hard for me to urinate... sound familiar?

Stacey