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Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment

Posted By ER on May 01, 1999 at 10:08:48
Dear CCF Neuro:
I have been to numerous doctors in the past 5 months with the constellation of symptoms described below and still have received neither a confirmed diagnosis or treatment. I hope you can help, and I apologize in advance for my very, very long post...
I was a healthy 35 year old female until early December 98, when I developed faint tingling in my fingertips, toes and inside of left leg. Within about one week, it spread ALL OVER my body - scalp, face, legs (calves and thighs), feet, torso, back, arms, hands, fingers while increasing significantly in intensity. Along with the constant systemic paresthesias I also experienced painful electric shocks and intermittent buzzes that migrated throughout my body, particularly in my left hand and right foot, but other places as well. Also had the feeling of being "bitten" by bugs and having the "creepy crawlies" all over. I felt like a human TENS unit. It's the only way I can describe the sensation. These feelings occurred constantly, relentlessly - 24 hours per day without any relief. Eventually the skin on my fingertips became very sensitive and felt like it was burned and for several days my fingertips were numb.
Preceding the start of the paresthesias by about two weeks, I woke up with a strange bug/flu (on Thanksgiving Day!). Sore throat, cough, etc. I was prescribed a 10 day course of PCE. Oddly, I was completely better in two days. Also, a day or two before the paresthesias began, my podiatrist injected my left heel with cortisone in attempt to calm down a stubborn case of plantar fasciitis that had persisted for months prior. (I had received one previous injection in August.) I was also given an Rx for Daypro to help the heel pain and inflammation. Associating the paresthesias with the Daypro, I immediately discontinued taking it.
Several weeks after the onset, other odd symptoms came and went, including an intense toothache type pain in the index and middle finger of my left hand, same for left foot; "dead" spots that traveled around my body - especially between my toes; deep bone pain in my right upper arm; a strange perception problem where I felt disconnected from myself; lightheadedness; sore ribs; sore lymph nodes; nausea/motion sickness; floaters and flashing lights in my right eye. All this while the chronic painful paresthesias continued. I have also had on and off night sweats and a burning bladder.
In early March 99, I was overcome by extreme burning nerve and muscle pain that, in addition to the chronic paresthesias, came on suddenly and, crazy as it sounds, moved down my spine over the course of several days. I could actually feel the "thing" as it traveled down my back - first affecting my shoulders and arms, then my trunk, and finally my legs, and along its path leaving me with terrible burning neuropathic and muscle pain. In addition, my skin, from neck to foot felt burned. I could not wear clothes without being in pain.
It is now 5 months since this began, and although somewhat better, I still suffer from systemic, painful paresthesias (even my tongue sometimes!), on and off burning pain across my back and along my limbs, left side finger/toe pain, and occasional muscle twitches (a more recent development). I still have occasional lightheadedness. I am on Neurontin, 1200 mg daily, which seems to alleviate some of the abnormal sensations. In the last few days I began feeling an increase in the painfful sensations and fear a relapse.
Over the course of these last few months, I have seen 2 neurologists, 2 infectious disease specialists, 1 rheumatologist, 1 internist and 1 psychiatrist (to rule out the possibility of all this "being in my head"). All performed complete work-ups. Collectively, I have had numerous general and neurological physical exams, chest x-ray, brain MRI, c-spine MRI, somatosensory evoked response, and complete blood work (more than once). I have been tested for Lyme twice, HIV, mono, iron overload, CMV, HTLV-1, and a host of other things I can't even remember. All the tests showed normal/negative results. I seem to be the picture of health. Although one neuro was looking for MS, my brain MRI was perfectly clear and SSER was normal. C-spine MRI showed disc bulges at C4-5-6, and a moderate herniation at C6-7. I have not yet had an EMG or a spinal tap. The only odd finding was TSH. In January, it measured on the low side of normal at .73 (T3 and T4 were normal). In late March, TSH was retested and was unmeasurable at <0.1 (again T3 and T4 were normal). It was retested 3 weeks later with the same result. I have not had symptoms of hyperthyroidism. I'll be seeing an endocrinologist in a few days.
Not one of the many physicians was able to give me an absolute diagnosis - they had never heard of my symptomology. I was told several things: polyneuropathy, polyridiculoneuropathy, guillain-barre variant, post-viral syndrome. They said my condition will, in time, resolve itself. Meanwhile, I am left with relentless paresthesias without much relief.
Can you please offer your opinion as to the validity of "post-viral syndrome," the possibility of MS or Lyme, what I can do about the buzzing nerves, the prognosis for getting better in time, and what other avenues, if any, I should pursue for diagnosis/treatment. Should I come to the CCF?
Might there be a connection between my symptoms and perhaps an allergy to the cortisone injection? Could the cortisone have been tainted and caused a severe reaction? Is the fact that I had a passing upper respiratory bug two weeks prior more evidence of "post-viral?"
Thank you in advance for your help and again, my apologies for the very lengthy post.

11 Responses
Avatar universal
Posted By mk on May 02, 1999 at 21:01:30
I was wondering if I could ask a question regarding the ssep tests that you were referring too.  If you do have a prolongation/latency does that mean demeyelation?  If not, how can one determine demeyelation vs other problems with the latency?
Thankk you

Avatar universal
Posted By CCF MD mdf on May 03, 1999 at 16:58:41
Prolonged latency means that the signal takes longer to get to the destination than it should. That means the conduction is slower. A common interpretation of slower conduction is demyelination. However, there are many technical things that can go wrong in one of these tests, so don't just take a number without more information.
I hope this helps. CCF MD mdf

Avatar universal
Posted By mk on May 03, 1999 at 18:24:33
Thank you for your quick reply.  I would assume other information would be clinical to go with the SSEP.  If you have only sensory problems as well as calf cramping, numbness, loss of reflexes, and and assorted array of symptoms, should one have the SSEP repeated at a certain point (What would that point be)later down the road to see if there was a technical error in an attempt to rule out other causes?  I guess I am confused.
I would like to thank you for this infomative site and the kindness that you physicians have with posters here

Avatar universal
Posted By ER - To Karen on May 04, 1999 at 11:10:18
I have sent email to your private address. Look there...

Avatar universal
Posted By CCF MD mdf on May 02, 1999 at 17:52:31
This is quite difficult to figure out, and I encourage you to follow up on the thyroid abnormalities. An endocrinologist should be able to interpret the lab results in the context of your overall situation. Whether it has anything at all to do with your paresthesia, it is important to be sure it doesn't go un-evaluated.
I don't know what you have. It is often difficult for neurologists to localize numbness and paresthesia. That is, our task is to figure out where in your nervous system the symptoms (paresthesia, etc) come from. The first clues come from your own descriptions of the pattern and timing. The physical exam helps narrow down what it may or may not be, and occasionally tests must be done.
The only thing I can do here is to help you understand what tests might be done and why (many of which you have reported above). That way, you can go back to your neurologist and ask appropriate questions, or know when to seek a second opinion.
An EMG and nerve conduction study (NCS) evaluate how the peripheral nervous system work. That is, the nerves and nerve roots are the subject of the study. If something is wrong in your spinal cord or brain, the EMG/NCS is not the test to rely on to figure it out.
An MRI (brain, c-spine, etc) evaluates the integrity of the central nervous system (brain and spinal cord), and to some degree the nerve roots that come out of the side of the spinal cord.
Evoked potential studies (SSEP, VEP, and AEP) are used to evaluate the integrity of long fiber tracts in the nervous system. In the SSEP (somatosensory) study, there is a portion of the signal which is carried by nerves and the rest of the signal is carried in the cord and processed at various stages of the brain. SSEP studies are used most often to detect areas of demyelination in the central nervous system. Hence, they are useful for diagnosis of MS.
Migratory paresthesia is very difficult to pin down. From the information provided, I am not particularly suspicious of MS. Hard to say if you have a neuropathy. I think an EMG would be a must for that diagnosis. The Guillain-Barre variant you mentioned is a type of neuropathy - can't jump to that conclusion, and it seems unlikely anyway.
It may or may not be appropriate to say this is post-viral, but it still would be more satisfying to know WHAT part of the nervous system is affected.
If you want to know if this is Lyme disease, ask your doctor if he/she has done the appropriate blood test for Lyme disease.
I hope this helps. If you desire a second opinion, we are available at 800 223-2273, ask for extension 4-5559 (neurology appointments).
CCF MD mdf

Avatar universal
Posted By Karen D'Angelo on May 03, 1999 at 21:38:40
Dear ER,
I have been searching this site since last Aug. '98 for some possible answers to my maladies. I, too, was suddenly stricken with symptoms similar and others, exactly like yours. I currently have plateaued, began in December, and am left with paresis on the left side of my face, my right arm, and my vision has a soft focus in the left eye. I fired my GP for his arogant, patronizing, & patriarchial attitude towards me in Jan. '99 and am with an MD internist (unfortunately he's no better..he's been practicing for 32 years and the last ten years has decided to go holistic. Not my choice of medicine, but I'm too tired & frustrated to seek elsewhere. I don't buy into that my "chi" is out of balance and that's why I got sick!) I am a 41 yr. old female and (previously) healthy. What I would like to know from you is what activities were you involved with or doing around that time? Also if possible, what did your diet consist of?
Funny thing, my last blood work shows my TSH dropping (March 17, 1999). It's at .88 but I don't feel this effect either. I'm in Michigan and am now seeing doctors from Beaumont Hospital. My last ditch effort will be to go to the U of M
medical center if this continues much longer. To tell you about myself with regards to my questions about you (trying to see if there's an environmental connection, I hold a certificate as an Advanced Master Gardener through MSU extension in my county. The month before I was stricken, I was hosting a yard tour open to the public of my property to help raise money for a local gardening club. This went on for 5 hours and I encountered 63 people on the day. I also was examining "red tide" (pond scum) under a microscope that had been brought into the extension office. It contained red algae and numerous zoologic animals as well as bacteria. I was chowing down on raw carrots alot. I ate "Mr. Turkey" turkey franks July and August (listeriosis contamination.) I had a cracked molar filling below the gum line and couldn't get into my dentist until one and a half months later. I was lifting weights on the day that it took hold of me.
Diagnosis that I have heard: Guillain-barre, vasculitis questionalbly associated with a viremia, neuritis questionably asssociated with a sinusitis, polyneuritis, MS (though MRI, sed. rate, ANA, & spinal are negative). I've been checking the CDC's site but that's a lost cause. Any info you can offer to me would be most grately appreciated.

Avatar universal
Posted By MEG (not a doctor) - concerning TENS electrical sensations on May 05, 1999 at 00:23:56
I too had the TENs electrical sensations along with paralysis following a virus.  Had attended an international conference with over 50,000 people in attendance and a day or two later developed flu-like symptoms.  The neuros had never heard of this TENs unit electrical sensation I described.  
For the "creepy crawlies" you describe, for me they termed it Restless Leg Syndrome (even though it spread to arm).  The neuro prescribed a Parkinson's Disease medication - I believe it is called Mirapex.  It worked for me.

Avatar universal
Posted By Bonnie on May 23, 1999 at 09:18:05
Can anxiety affect the results of the ssep test?  I have been told that my symptoms could be stress related. I have had similar symptoms but had an abnormal ssep test.  I do have a radiculopathy, but it is on the side that is less latent than the left any input on this?

Follow Ups:

Ongoing Bizarre Symptoms - No Diagnosis/Treatment tina 5/24/1999

Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment P 6/03/1999

Ongoing Bizarre Symptoms - No Diagnosis/Treatment Elizabeth 6/03/1999

Re: Ongoing Bizarre Symptoms - No Diagnosis/Treatment Vivian  6/07/1999

Avatar universal
Posted By Shelly on May 05, 1999 at 05:17:40
In January and February, I had been seeking treatment for a variety of symptoms which had been bothering me, including heart palpitations, sharp pains in my head (mostly in the back of the head), sharp migratory pains in my arms, legs, torso.
In March, I had an MRI done after my left eye developed a persistent muscle twitch and then the left side of my face went numb (including lips) while looking at my computer at work.
While on Easter vacation, I began to experience "fits" (six in total).  The typical fit was as follows:
I would wake up in the middle of the night (reason unknown) with a general sense that "something" was about to happen in my body.  Slowly, my arms and legs would begin to tremble uncontrollbably (for about three minutes?)  I would also expereince a strong shift in my bowels and feel I would have to go the bathroom.  Thins around me seemed far away and my head would sometimes tend to look to the right.  On occasion, my tongue would feel HUGE in my mouth.
Immediately after the attack, I would experience "loss of power" sensations in both my legs and generally felt weak, often taking about two hours to come out of it.  These attacks usually began when I was asleep.  About three of tehm began while I was awake, usually starting with a jerky movement in oone or both of my legs).  A doctor prescribed 5 mg of Valium before sleeping and this helped me sleep ( I only took it for three or four nights when i was still afraid).  The trembling went away, but I would still have an occasional "episode", as recently last night.  THe main characteristics are a numb, crawling feeling in my head, weakness in my legs, shifting of the bowels, spacey feeling.
In the past month and a half, I have had an MRI (before the attacks, showing no abnormalities), blood tests, blood cultures, been hospitalised for possible endocarditis.  This week, my rhuematologist is checking me for Lupus, and an EEG for epilepsy.
I am a 29 year old black American living in London.  With the exception of Mitral Valve Prolapse, I have no known health problems.  In the past five months, I have had a severe case of tonsilitis (Christmas) and also a very "violent" stomach flu in February.
Is there any advice you can give on getting to the bottomof these symptoms?
Could the attackes have been a result of epilepsy or lupus?
Are there any types of seizures other than epilepsy that this could be?
Any help would be great!

Avatar universal
Posted By Jill on May 06, 1999 at 01:47:46
I had similar symptoms following a flu and was also given antibiotics at the time.  You may want to check out http://home.att.net/~quinolones/index.html where people are reporting adverse reactions that have neurological symptoms exactly like the posts regarding these "ongoing bizarre symptoms".  I personally am a year into whatever has happened to me.  And still burning, having muscle spasms.  I have had tons of tests all negative, and my Nerve Conduction study showed (axonal) poly-sensory (suspect small fiber neuropathy).
Which is how this is presenting for others on the forum above. Just slight snapped latencies!  I have also seen endless specialists and now they come to two conclusions.. That it is a toxic reaction to the meds or a viral.thing..though no tests point to a virus. I have paresthesias burning everywhere -that began in my face, neck upper torso then migrated around my body. Also have muscle tics or spasms in thighs and upper back- crawling sensations, vibrating sensations, and my skin reacts when I burn by itching and presenting with a rash. Joint pain and muscle aches.  Also at the onset all my moles on my body darkened and I was treated for an adverse drug reaction with Medrol which escalated the burning.I also had a skin reaction where I burned that later left brown raised spots and a biopsy revealed these lesions had turned into inflamed benign moles?  Neurontin and Ultram escalted pain and I recently had a dna test to determine if I could not metabolize these meds or convert them in my liver.  I wondered if the Cleveland Clinic Docs have any idea if these drug induced neuropathic syndromes abate in time. I know earlier on you said drugs could not do this but I beg you to view the forum above.  I think it would be helpful when patients come to you with these strange symptoms. I was told by one doc usually 4 years to recover with some residual effects? and that some people do not recover.  I also recently had a ANCA test? is this for Wegeners Granulomatosis?  My earlier sed rates, blood work and 24 urine tests were normal..But I read that this is not often diagnosed in the first five months of onset.  Since we have ruled everything else out how would one detect a virus if it doesn't show up in any tests? All I know is it seems like alot of us are suddenly developing these bazarre symptoms that migrate over time and fluctuate but do not abate, and all our tests are normal? Since there is no test to show a drugs cause and a effect in this regard is there a way to determine a virus or not?

Avatar universal
Posted By Ted on May 22, 1999 at 03:56:45
Add me to the crew..  For the last 3mo I've experienced symptoms very similar to what Jill & ER have described:
Started out w/ flu like symptoms and was diagnosed w/ sinus infection and t reated w/ ammoxicillin.  The fun began about 1 1/2 weeks after w/ tingling sensations that started @ my fingertips and over the course of a week or two spread throughout my body.  The tingling is now focused in left face, left arm, both thighs, and upper calves.. not to mention tounge, bottoms of feet, upper back, etc etc etc.. I've got shooting pains and stiffness in my legs, and to a lesser degree, in my abdomen.. muscle spasms in my shoulders and calves, and skin that becomes very inflammated and 'tight' feeling when I lightly rub or scratch it (especially so in my neck and upper chest)
So.. my blood work is normal, I had a MRI of my head and upper spine that turned out normal.. nerve conduction and hmmm.. the other one where they put electrodes on your head and shock your feet were normal..  I'm 23 and prior to this was feeling ..normal.  My neurologist thinks a viral syndrome and my general physician says Chronic Fatigue Syndrome.
My concern is that, while I am taking exceptionally good care of my body these last 3 months (plenty of rest, food, H2O, etc) the symptoms are worsening.  I have the same question as Jill.. is there any sort of testing which would determine if this is a virus?  What else might explain, or for that matter, help the skin inflammation and reddening?  When I the symptoms are at their worst, my whole upper body and face feels tight and swollen, to the point where movement is restricted (but doesn't _look_ swollen), I can feel my heart beating very strongly (not quicker), and everything tingles like crazy.  

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