HELP! Parasthesias, weakness, fatigue, fasciculations, imbalance since Aug. '06

[396SS]

Aug '06, finishing degree, under stress. Sitting at computer, big toe going numb, burning, over weeks progressed to other foot, all toes & in months progressed to feet, calves, hands, wrists, forearms.  Walking far made foot drag/numb
Hx: 31 yo F Scoliosis 21 deg. w/ spina bifida occulta in L5 and stenosis at L? - neck and back pain common.  Was told degenerative disc disease by one Dr., another disagreed. Dry mouth starting Spring '06 - very uncomfortable. Insomnia/anxiety - Zoloft 25mg daily and Ativan 2mg to sleep (for about 1.5 years) but I am definitely not imagining this pain. MVP - mild with PVCs/Chest pain
Constant low blood pressure and low temp. - nurses always ask if I feel ok. 4 yrs ago had virus w/ high fever.  As fever inc., so did vertigo sensation & tinnitus when changing gaze in any position.  MRI & bloodwork neg. then - dizziness lasted 3/4 months and would send shock sensations w/ "electric" sounding tinnitus when changing gaze, finally subsided.  ABR normal, ENG normal.  Fam Hx: diabetes, Grave's disease, undiag. neuromuscular dis, rheumatoid arthr.
Now, calves tight, fasciculations all over, jaws weak/tight, fatigued, extremities weak, parasthesias, tremor, imbal
Neuro's workup now:
Labs - all norm, except increased IgG slightly
VEP - norm ABR - norm NCV - norm
MRI - one non-enhancing lesion at splenium of corpus callosum, "could be MS plaque" Compared 4 yo MRI w/ new - same lesion appears - missed on old MRI.
Neuro stumped - referring to rheumatologist for fibromyalgia or get spinal tap or 6 mo MRI? SCARED of what's wrong with me!

So tired

[really??]

My daughter has Chiari--it is a very complicated condition.  Because pressure is being put on the cerebellum, and the spinal cord--the symptoms can be a mixed bag worth.  Patsy-as far as your urinary problems go, if they did a full spinal MRI then ask if you have a syringeomylia.  These two conditions are quite frequently "peas in a pod".  They travel together, and a syringeomylia might be able to explain the urinary retention problem.

My daughter has both conditions along with a few others that came along for the ride.

[Annie62]

Hi Patsy,

I'm glad they found somthing :).  Does the doctor think it could be responsible for your symptoms or haven't you had a chance to see him yet?  Do you know much about Chiari 1 malformation?  I would read all you can on it so you can question the doctor on it when you see him.   Unfortunately, I don't know much about it, just that it can cause a lot of different symptoms, many of which are the same as MS.  I met someone several years ago who had it--we were taking a class together and got on the subject of discussing our health problems/neuro symptoms--and she told me the doctors didn't know much about it back then but that they were finding it was responsible for a whole host of neurologic symptoms, many of which doctors had previously attributed to patients' psychosomaticism.  

If the doctor thinks that it's responsible for your symptoms, maybe surgery would be an option for you.  That would be great.  Keep me posted.

[patsy10]

Annie, my  MRI showed Chiari 1 malformation.  Everything else was ok.  My past c spine fusion looked good according to the neuro.

[patsy10]

I don't want their money either.  I just want to prevent bad treatment from happening to other people.  I really can't say I've been treated badly but I'm sure my notes say what yours do.  After all, I was referred to a psychologist.  As far as lyme goes, I did have the rash, a whole neurologic,infectious syndrome following etc....I may consider treatment again.  It's just so hard to believe it wouldn't show up somewhere.  So far all my tests have been normal...CRP, RF, copper tests, B12 tests, ANA, sed rate, spinal tap, multiple MRI's, lyme, evoked potentials, EMG.  All these tests are a year old or almost now.  The recent MRI of my c spine was the only new test.  My only diagnosis and CFS/FMS.  By the way Annie, you seem very intelligent and  educated.

[Annie62]

Patsy,

I hope you hear about the C-spine MRI soon and that whatever the results are they are accurate.  (I won't hope it's abnormal, because that's not good, but I also won't hope it's normal if there is an abnormality to be found and it's just not picking it up).  Every time I used to have testing done and the results would invariably be normal my mom would say, "Well, that's good, everything came back normal," and I would get so irritated and would tell her that I wasn't wishing to be sick, I was sick, and normal test results just meant they still weren't finding what was wrong with me.  

If your C-spine is normal I would take the suggestions of the CCF doc to the next visit with the neuro and see what he thinks.  I know, I'm a good one for telling others what to do...I'm a lot more assertive in writing and in the internet netherworld than in reality.  When I would go to the doctor 90% of the time I wouldn't ask any of the questions I had written down or say the things I wanted to say-I'd either forget due to nervousness or more often than not I would be silent due to being acutely aware of not being believed.

Patsy, there are a lot of things than can cause numbness and tingling all over the body, not just primary neurologic diseases, so maybe you should investigate those furthur (all the connective tissue diseases, thyroid disease, B12 deficiency, etc.) if you haven't already been tested for those.  But you know inclusively what your symptoms are and I don't, so maybe those conditions aren't relevant.  I remember you also mentioned you had Lyme in the distant past (or thought you did).  Could that be a factor after all these years?  I don't know much about what parts of the body/symptoms can be affected/effected by different levels of the spinal cord vs. brain, but if you do know  and have doubts about all your symptoms being explained by damage done during spinal surgery, I would ask your neuro specifically about those things.  

As far as considering a lawsuit, I don't want their money, but I do want them to know what they did to me.  Some of them probably won't even remember me (that's how long it's been), but I really intend to write several of the doctors after I get a dx (I have a pretty good memory of what went on and I also have all their notes on me now).  And I also intend to write the very 1st neuro I saw back in '91-when I was 28 years old and had that weird thing happen to me where my eyelid drooped, my pupil became constricted and I stopped sweating on the left side of my body.  He didn't disbelieve me-he saw it, so he didn't have a choice-but when I asked him what could cause it he said a chest tumor, but qualified that by saying it was very unlikely (and it *was* unlikely considering my age).  Why he didn't do any testing to find out what *was* likely (as a cause), I will never know!  I didn't know a thing about medical stuff back then and took his word that it was probably benign.  I just read that this neurologist (apparently retired) is now a consultant for malpractice attorneys.  Isn't that ironic?!  Maybe I should call him up and say, Hi, Dr. ---, remember me?  I'd like to hire you as a consultant in a lawsuit against *you*!  That ought to give him pause, which apparently my Horner's didn't.  His office also told me that they couldn't find my records when I requested them repeatedly in '99 while living in PA and trying to convince the neurologist up there that my symptoms were real.  Must be nice to have all that power to fiddle (so they don't delete my word) with the lives of others.

[patsy10]

I went and saw a neuro in January.  He is convinced I have a spinal cord injury from my cervical spine fusion.  I never even got to the neuro's suggestions. I had a c- spine MRI a week ago.  I don't have the results yet.  I called today and she said they were in but he was gone all last week.  He was very busy today so hopefully he will call me on Tues.  I really don't think that's the problem.  I have too many symptoms in areas that could not possibly be my neck.  I have twitching all over, including my head, burning sensations all over,including my scalp.  The numbness and tingling sensations are all over, even on my face and  head.  I even have them on the roof of my mouth and tongue.  There is just no way these are related to my neck.  It just isn't possible.  I just can't get anyone to listen to me.  He did not insinuate in was all in my head though.  He said these symptoms will never go away. Ugh!  It sounds like you have part of an answer but not all of it.  Well, at least they are listening now.  Honestly, I am a nice person but if they give you a diagnosis that is treatable and could have been treated years ago, and you could have avoided much of this pain and suffering, I would seriously consider consulting an attorney.  It's just not fair what you have had to endure.

[Annie62]

Hi Patsy,

I went to Mayo in Dec. and saw an MS specialist.  She didn't actually come right out and tell me that she didn't think I had MS, but she said how my symptoms started back in '90/the Horner's syndrome would be a very atypical presentation for MS.  She said it sounded more like autoimmune autonomic neuropathy and did an autonomic dysfunction work-up on me as well as brain MRI.  Once again MRI was normal.  A lot of blood work was done to try to pinpoint the cause of the autonom. neuropathy but every bit of it was negative.  In fact my tilt table, SNIF test, and test for urinary retention (I knew that one wouldn't show anything!) were all normal.  The only abnormal testing was the sudomotor/QSART test.  Apparently I still have hypohidrosis on the left side of my body (residual I assume from the past Horner's).  I wasn't even aware that I still sweat less on the left side, as the Horner's ended 14 years ago, but the test picked it up.  I was very surprised.  Now they know I wasn't imagining the Horner's.  I wish I had known in the past what sudomotor tesing was--I would have demanded to have it done--since the idiot neurologist I saw back in '91 never even worked me up for the Horner's other than a CXR and the subsequent neuros I saw never even believed that I had it.  Guess that's why they never suggested I have sudomotor tesing done!  I only recently read about the test when I started to read on auton. neuropathy after the gastroparesis dx in August.  That one test could have saved me years of misery.

Anyway, the neuro sent me a letter saying that the testing confirmed I had autonomic neuropathy and that it was most likely autoimmune in nature, but unfortunately no cause was identified, and she suggested I go back up to see the autonom. dysfunction specialist, see her again and also get an LP to definitively rule out MS.  So I found out today I am going up the end of March for that.  I haven't gotten a neurologist locally and plan to do that after I get back from Mayo, though I got the name of someone who is supposed to be good (did his residency at the Cleveland Clinic/most of the practice did actually).  Luckily there is still a neurology practice left in town that I haven't seen (and been dismissed by).

If you have found out anything more, let me know.  Do you still think you have MS or do you think that it might be something else?  Have you read much on the connective tissue diseases?  I thought for years I had one of those.  As you probably know, neuropathy is associated with many of them.  What about the suggestions the CCF neuro made about getting tested for mitochondrial disease, etc.?  Do you plan to follow up on any of that?

[patsy10]

Hi again Annie.  We're the same age too!  I can sure relate to what you are saying.  I hope someone can figure out what we have....as I sit here twitching, numb, tingly, cold, blue feet etc......I have never even come close to believing it's "all in my head".  I know it isn't.  I know yours isn't either.  When do you see Mayo again, or do you?  What more is she going to do to find out what you have?

[Annie62]

Patsy, you are right--there is no peace of mind with a negative neuro work-up when you have ongoing unexplained neuro symptoms.  I just love the people on this board who say things like "You have a problem if you persist in believing you are ill and can't trust your neurologist," (are they trying to score points with the CCF doc?) or "You should feel assured it's nothing and just need to relax and do deep breathing exercises" (not verbatim quotes, but you know what I mean).  I'm certainly glad I didn't trust *my* doctors.  They almost had me convinced (though not quite) that I was insane!  I seriously contemplated suicide.  I started to question my interpretation of what was going on with my body: maybe it's "normal" to have pee running down my legs as I'm running to the bathroom (after all I'm 44 now!); maybe it's "normal" to feel like a rope is tied around my leg and the circulation is cut off; maybe I'm *making* myself feel off-balance in the doctor's office when I get on the scale (after all, I'm hyperaware of what they're thinking about me, since I'm sure the doc has clued the nurse in who is weighing me on what a nut-case I am, and maybe I'm unconsciously exaggerating the effect); maybe it's "normal" to choke on my food and have my speech become slurred and look nine months pregnant by bedtime and have nausea and stomach pain that is so severe that it doubles me over and keeps me up night after night.  

After all, the doctors didn't seem to think much of what I was telling them and the multitude of tests done and all the neuro exams showed nothing (until recently, that is) other than that I was a psychosomatic, OCD-plagued patient who "continues to *insist* that she has a neurologic problem, *claims* that she had a past Horner's syndrome, "insists/claims" ad nauseum.  When I read my records before going up to Mayo I was so outraged (and still am) that I have already typed up a five-page letter that I am sending to the last neuro I saw (as soon as I get a definitive dx) to answer every one of his assertions/BS in his dictation.  

Don't ever give up, Patsy.  I can tell you are frustrated.  Eventually something will come to light.  It did for me, though later than sooner.  If I hadn't been dxd with the gastroparesis I would still be hearing the same **** from them.  Although the neuro at Mayo knows I have auton. neuropathy, and I believe she is on the right path to diagnosing me, I absolutely believe that she would have dismissed me as well (as good of a doctor as I think she is) if I hadn't just been dxd with the severe gastroparesis prior to heading up to Mayo to see her.  She didn't intend to do any testing on me (just a consult).  My point is, sometimes that is what it comes down to-unfortunately.  Doctors don't believe in what they can't see (I like to think of it as an "illness" they have), and when something is finally revealed in your case via testing or neuro exam, then it will lead to further testing and eventually you will be dxd. I hope you get answers soon.  

By the way, getting a diagnosis (or being deemed credible) doesn't lessen the anger any (at least it didn't in my case).  I haven't even seen my PCP (actually a very good diagnostician, I might add) since I got back from Mayo and it is going to be interesting to see what he has to say when I see him (my last appointment he was still insisting it was psychosomatic-though in not so many words; they are very cautious, you know).  I felt like taking his stethoscope and wrapping it around his neck, and I left his office and drove home feeling desperate once again.

[patsy10]

Someone posted that a "negative work-up" will give you piece of mind.  No it won't.  At least, not for me it didn't.  I have all the same symptoms you have and many more for almost 2 years now.  Complete neuro work-up (saw 4 neuro's) negative.  I don't feel one bit better about it.  In fact, even worse because I don't know what it is.....

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
   The symptoms that you describe are non-specific, and can be seen in a number of different problems.  Given your story of multiple complaints in multiple different areas of the nervous system (without evidence of problems despite fairly extensive testing), my first thought is depression.  Depression results in the amplification of minor pains and can even produce pain (that feels just like real pain) that would not otherwise be there.  Depression also causes insomnia and fatigue.  Some anti-depressants are better for pain than others (at least in clinical experience-no good trials) such as wellbutrin, effexor and possibly cymbalta.  I would suggest that you discuss these options with a psychiatrist.  That being said, I would recommend continuing to search for other causes as you start a trial on wellbutrin, etc.  Many of the symptoms that you describe are found in patients with multiple sclerosis, but from all the symptoms that you describe I doubt that one questionable spot on your MRI could explain everything.  I did not hear about a MRI of the cervical spine (I would suggest one with contrast if you have not had one), and/or a lumbar puncture (to look for inflammation, IgG index, Tourtelotte panel, oligoclonal bands, NMO antibody).  I would also recommend an EMG given your history of weakness, numbness/tingling in your calves and fasiculations.  An SSEP (somatosensory evoked potential) would be able to assess the role that the curvature of your spine may be playing.
I hope this has been helpful.

[396SS]

My maternal aunt had an MRI last week and they found 2 periventricular lesions and some other various focal intensities in white matter?  She has bladder probs, pain/weakness in the legs, speech problems (can't think of or form words), headaches, fatigue, swallowing probs.  She also has thyroid problems that they could not treat because her bloodwork is always strange (leukonpenia?).  Anyway, hoping the doctor can get to my question next:)

[396SS]

Just an update:  still waiting on MRI of c-spine.  Parasthesias, burning in feet pretty bad last night with calf weakness.  It really annoyed me.  I felt like I couldn't move off the couch, I was fatigued and agitated.  It seems as though the burning goes away a day or two and gives me hope that it will not come back.  Then, inevitably, it returns and disappoints me terribly.  I'm trying very hard to keep positive and not put too much emotion into the physical pain I'm enduring (I'm too stubborn to take the Neurontin I was prescribed, don't like taking these drugs!) Also, I had a nasty stomach flu for Superbowl Sunday with a fever and everything.  Noone else got it.  Of course I'm thinking, why me?  Immunosuppressed maybe?  Oh well, I guess time will tell  :)

[396SS]

Thanks for the advice all - my lumbar puncture is negative for oligoclonal bands.  Everything else was also WNL.  I went to a new neuro and he is ordering the labwork for Lyme, doing a "chronic fatigue" panel (looking for Epstein Barr, HSV 1 & 2, CMV, etc.) and says I don't have MS.  He scoffed at my one area  of hyperintensity on the corpus callosum.  His gut reaction is "myofascial pain syndrome."  I did have several tender points that I was not aware of until he poked around on me.  My babinski, rhomberg, etc. all normal.  He did order a MRI w & w/o contrast of my c-spine, as the other neuro neglected to order it.  That is sched. for Monday.  I can see that the Cleveland Doc is getting caught up with our questions.  Will post with c-spine MRI results when I get them.  Thanks for any input.  PS....started Cymbalta 1.5 weeks ago for neuralgia - possibly helping, not to mention making me a little happier:)

Take care all

[lat67]

Hi,

My symptoms are very similar....i have had all the testing done...including Lumbar puncture.  My advice would be to get the lumbar puncture and if it is clear then look seriously into lyme disease.
I was dx with lyme in May and am now in treatment.  If you want any information on lyme please feel free to contact me at ***@****
Oh and yes lyme can lie dormant for 20 years!

Lesley

[hm2007]

I've dealt with stress all my life too, but there's only so much your body can take.  Plus, it weakens your immune system and makes you susceptible to all kinds of stuff.

Anyway, I think you should get all the tests done to get some peace of mind at least.

[burningpains]

What is the person supposed to do if it's viral?  Take Valtrex to thwart replication?  I didn't think there was much one could do for viruses?

[hm2007]

Sounds like a virus, although I'm begining to think that stress can produce the weirdest symptoms...

[396SS]

Thanks all so much for the comments.  I'm sorry, I was mistaken about IgG, it was normal.  It was IgM that was slightly elevated (cutoff was something like 240 and mine was 251) and it said at the bottom:

"an apparent polyclonal gammopathy.  Kappa and Lambda typing are slightly elevated."  
My neuro dismissed it and another doctor friend did too.

I do have hyperreflexia.  This weekend I was very weak and fatigued, and along with the weakness came anxiousness, almost panic attack-like.  I know the parasthesias are painful, so I wonder sometimes if my anxiousness about the parasthesias are causing muscle tension and fasciculations?  Is that possible?  I do not want to brush this off as anxiety, because I've dealt with it all my life - and this has never happened.  I have a bachelor's deg in psych and another degree in another medical field, so I am medically inclined and trying to be objective here.  Plus, I do have that one lesion on MRI.  I know the spinal tap is invasive, but I should cover all bases.  I am going to schedule it this week.  Also, I had a tick bite when I was 11 (20 yrs ago), that can't surface as Lyme 20 yrs later can it?  It was in the crown of my head for a week until my dr. removed it and I had bumps all over my head until it was removed....

[JCmcc]

See someone asap if it is viral, need to watch out for Acute Transverse Myelitis. Could be tick borne.

[everhopeful12]

sounds exactly like a friend of mine... who has CRPS. Complex Regional Pain Syndrome. If you don't have easy access to the diagnostic criteria, I can send you several urls to the medical sites, and also a couple of good patients boards (some are more useful than others).

[4t1074]

Thanks Mike, as Jenny, i had no clue what they stand for, but have spoken with my docs enough to know that they tend to believe they are reactions to the auto immune system...?

Good Luck, as there are a whole lot of us with many unexplained problems...

[burningpains]

Hi there.  Sorry for what you are going through.  I am going through something very similar.  Take a look at my recent post.

I was wondering when you last had your EMG/NCV?  If it has been more than, say, 4 months ago, you might want to do it again.  My neurologist says that it doesn't take a long time for results to evolve (or devolve), and he also said that sometimes they don't read the results accurately -- scary though.  I would get this somewhat painful test done at a place other than where you had it last just to make sure you are getting another opinion.  My first EMG came back normal and then months later came back abnormal in the NCV part, showing slowing (peripheral neuropathy).

Hang in there.  You aren't alone!

[everhopeful12]

oops - and a P.S. - that last thing you want to do if the virus triggered CRPS is have another spinal tap! Invasive diagnostic and treatment options worsen CRPS. Please read up about it before pursuing the auto-immune route (i.e., another spinal tap ASAP). Although there are links between the distorted immune response and CRPS (the chronic pain remodels the immune system and may cause abnormal lab results, CRPS is not per se an autoimmune disorder. Your family history suggests there may have been CRPS (undiagnosed "neuromuscular").