Undiagnosed with Mult Symptoms

[Brando]

I suffer from a relapsing/remitting undiagnosed neuro disorder that has caused myoclonic jerking, localized and migrating pins/needles, fasciculations, mild dizziness, hand tremors, and I have had episodes where my blood pressure actually feels like it is shooting up a moment after standing (I feel a surge of blood to my head) as if to compensate for the normal slight drop in bp typically experienced after standing.  Other than a single low B12 test, all bloodwork, EMG, nerve conduction and neuro exams have been normal, since this started almost 4 years ago. After a series of 5 daily B12 shots, my B12 has not tested low since.

I have had a single episode of near-syncope/syncope while reclined in a dental chair for a routine cleaning. With no warning, everything went black (but I was still audibly aware of everything around me) which scared me enough to get my heart really going and rallied me literally within a couple of seconds. In fact, I

[Handr]

I have been experiencing mulitple symptoms since 3/8/2004. I initially felt a heaviness / twitching on the right side of my face and aches in the lower part of my arm. 10 days later same thing only added chest pains. Primary care physiscian (pcp) administered EKG - normal.  Symptoms persisted, and I was (still am) frightened. A trip to the ER where I was worked up for all blood tests, CBC, thyroid, enzymes etc., chest x-ray; all cam back "normal".  The following week, massive headaches, eye blinking and palpitations. Second trip to the ER, spinal tap, blood work up and EKGs, all normal.  Left the ER still with a massive headache. Other symptons that come and go include the chest pains (burning sensation) right to left: upper and lower chest, headache neck ache at the base of neck. Sensation of pressure / water in my left ear. Concentration is difficult. Most recently, it seems car rides tigger the chest pains.  I am reluctant to drive.

[RTroub]

sounds very similar to the problems I have too.
I know I am not crazy but theses spells render me useless for several hours if not all day....I have been told I have everything from seizures to MS to spinal fluid leaks only to have them revoke these diagnoses later.
I am so surprised that modern medicine and physicians are so ready to write off their patients when a cut and dried diagnosis is not readily available.  I feel helpless and am trying to get it all back together to return to work and a "normal" life.
But these recurrent symptoms are holding me back.
Good luck to all!  Wish me luck too!
Bye for now.

[saran]

Hi I am having a hard time posting too.  I have had multiple symptoms off and on since 2001.  Have had fasciculations everywhere off and on since the initial event in 2001  Had MRI in 2001 with 1 small spot in the outer capsual. Evaluated by neuro with EMG and multiple blood tests..all normal.  Approximately 3 weeks ago had numbness in LUE and L facial region with facial drooping and slurred speech.  Taken by ER to hospital and dx with TIA.  Multiple blood tests performed and all were normal.  But, MRI showed 5 spots in small vessels of brain with plaque build up; nothing in the white matter of the brain except from original MRI in 2001.  I also have a hx of migraines. Additionally, I have what feels like weakness in LUE which has come and gone since 2001.  I am really freaked out. I am a 42 year old female with a 4 year old son. I work as an aquatics therapist in oupatient rehab.  I am really, really scared.  My family Dr has decided to try and send me to a bigger neuro center like Cleveland clinic but am waiting on insurance approval.  IS it ALS???? I am really, really apprehensive.
I also have a heart condition with arrythmia and something called neurogenic cardiopulmonary syncope...I pass out.  
Thanks

[jan]

Hi everybody,

The site I gave has moved:

http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=&f=133

I was told by my sister's psych to get ck'd for mercury poison'g, to have blood and tissue checked, because I have so many things wrong with me.  It was suggested here to be check'd for mitochondrial disorder (disease?) and someone else suggested celiac disease.  When I am up to it I will ask for these tests.  Maybe some of you should consider these tests and the ones I mentioned I have previously, according to your symptoms.

I now have an appt with my cardio for a Reveal Monitor, because one of my spells the neuros agree is cardiac.  We need to get to the bottom of it and this is the only way.

Wishing y'all the best.

Hugs

[CHADDY]

you might want to check out webmd.com to find more info on this also.  I find a lot on there about different conditions I've had.

[Nancy F]

I have had many of the same symptoms as you have described. The light headed feeling and some times difficulty swallowing. I had a ruptured disc at C5-6 with a bone chip on the C6 nerve root. A MRI of the neck revealed my condition. The rupture was putting pressure on my spinal cord. Hopefully this is helpfull.

[Suz in Texas]

Sorry, just finished that long post and forgot a couple of things. The neurologist put me on Toprol for high blood pressure over a year ago. My pressure was 144/100 for the 2 hours I was in his office the first time. Also, one little symptom that is terribly disturbing and has been ongoing for weeks now-the reason I finally decided to search out a subspecialist for the Meneir's. The pressure in my head seems to be constantly fluctuating. I constantly have pressure in my head anyway and lately, it seems to get worse and then a little better and then worse again almost instantly. I feel it beginning and then it subsides some and then gets worse-over and over and over. I can't take many antihistimes because of the blood pressure issues and the only thing that seems to relieve this is the diuretics. Thanks again.

[troubleshooter]

hello,
I am curious regarding any dental work done within 6 months prior to the beginning of nerve problems;
when i was 11years old I had a large amalgam put in a right rear molar. 3 months later i "caught" the mumps (the only one both in school and at home) followed by deafness in right ear 100%

at 51 i "caught" cancer of the spine,had T4-T7 laminectomy to relieve pressure from spine(failure), and the only relief of pain in the back came when I had agold bridge and two large amalgams removed.

dental metal, even composites, have thallium, gadolinium and other heavy metal pollution that may cause nerve damage.

dan

[Suz in Texas]

I'm so glad to find this site and I NEED A LITTLE HELP. I have so many of the same symptoms and many of the same diagnoseses (is this a word). I was also diagnosed with Meniers Disease (middle ear) about 21 years ago when I was pregnant with my daughter. I take a lot of diuretics for excess fluid levels. I do have a neurologist I like and feel confident in-in so far as we have gone with a diagnosis. I do have 2 c-spine buldging disks, boney spondolysis there which he does say help to cause the symptoms. I especially identify with Thompson 983 in your description of the "feeling like it's going to happen". For the past 3-4 months, I have had continual reoccurrances of the sensations you describe. They never quite totally disappear and are aggrivated by certain situations. One of the most complicating factors is that I have a husband who is a physician who was very hesitant in helping me get help when the more serious symptoms began several years ago. He kept saying that I had no physical reason for the symptoms and actually told my family I was possibly a little "crazy". I finally went over his head and went to the neurologist, had an MRA, MRI, C-spine series, etc. These tests did rule out aneurysm, brain lesions, etc. In the mist of all that we almost separated, I developed terrible anxiety which escalated to full blown panic attacks, etc. etc. I do take antianxiety meds and feel like this source of stress is much better. I too have what feels like "attacks" which seem to last for days sometimes 2-3 weeks, which is the case now. I have had the fuzzy head, fuzzy eyesight, terribly loud tinnitis (louder than usual given the Meneir's Disease), sense of "out of body" experience going on for about 3 weeks now. Some times are less than others. I usually don't have a bad headache but do have a sense of nagging ache from the shoulders up. The neuro confirms that I am not "crazy" as my husband had indicated and that I do in fact have complicated migraines. I very much appreciate that a doctor reads this website and answers questions. I'm just really confused. Do I have anxiety because of the complicated migraines or vice versa? Do I have cardiovascular issues? I've never had any tests relative to my heart and I too have some of the same near syncope experiences that Brando described. These really really stimulate my anxiety! I finally bought a blood pressure machine and have noticed that my blood pressure is running about 100/60 most of the time now. What I would like to try to find out is where in Dallas or Houston TX can I find a neurologist to see who has more than the usual expertise in these atypical, complicated migraines?? I need a name. I am going to see an ear specialist this week about my Meniers. Hopefully I can get some relief from the fluid complications of Meniers. Thanks again for all the comments and sharing on this site.

[jan]

Hi,
I have a number of these problems and all the diag, unfortunately.  I have positive TTT results giving me the diag of NCS (syncope) and EEG diag Complex Partial seizures.  The two really do mimic one another in my case.  I, also, have myoclonus whether or not they are seizure related I don't know.  Up until now it was assumed it wasn't, but now a neuro seems to want to find out.  I have 2 herniated disks in c-spine causing radiculopathy (pos. EMG), too.  It has been a real challenge to my drs and I to sort things out.  Oh yeah, I have at least 3 brain lesions.

Anyway, I just thought some of you would be interested in this forum for E, by patients for patients.  It's hosted my MGH.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Epilepsy&number=33&DaysPrune=1000&LastLogin=

Good luck.

[Thompson983]

I also wanted to add that my problem seems to be feeling worse every day. This also another obvious reason for my concern.

Thanks!

[Thompson983]

I have been experiencing problems since late December. I'm posting here because I can't get a new topic started and I have hopes of having somebody give me some helpful info. I have had this dizzy/light headed feeling for over 1 month. It all actually started around late Dec. 2003 with a few break periods in January. I don't feel like everything around me is spinning. More like a feeling that its about to happen. I guess the way to describe it is that my head feels shakey. Maybe unbalanced like or a backward and forward rocking type feeling. I especially feel this when my head is facing down. This won't disappear and I can't seem to find a cause or a solution. I had an MRI of my brain that was said to be normal, along with blood tests that were also normal(iron, thyroid, potassium, kidney, liver, hemoglobin, anemia, etc.). Yet, I'm still having problems. I had all these blood tests last month. Is it possible for the number levels of all these things to decrease in this amount of time? If this was related to not eating right or not eating enough wouldn't there have been something shown with my blood test numbers? I need help and I don't know what to do or think?

[ma2three]

Hi, I also have similar symptoms. Twitching on left side(usually hand), tingleing pins and needles in left foot and left hand, weakness left arm and leg. It used to be that I would feel these symtoms and then they would go away I would have these episodes 1-2 times a year. Recently they started and did not leave the weakness has gotten worse. I had a c-spine mri and found that I 4 bulging disks c3 to c7, bony spondylosis c3 to c7 and impingement of spinal cord c5-c6. My neurologist says my symptoms are from the spinal injury. But being the anxious person that I am, I seem to fixate on the weakness always wondering if the dr. missed something, maybe have something else. Well, I started feeling dizzy, verge of passing out, cold sweat, shakey legs, rapid heart beat. I feel that this is all anxiety. Also my heart feels as though it skips beats, and I feel sudden rush when this happens. Ekg normal, blood work all normal. But even though I know every thing is normal I still cant stop self inducing these anxiety attacks and occasional panic attacks. Have you had a c-spine MRI? you may find that your tingleing and twitching is pinched nerves. As far as the anxiety... if you find something that helps let me know.

[Brando]

FYI - I had an MRI of my brain & lower spine almost 4 years ago when my very first symptom (tingling/burning) appeared. Everything on it was normal. I have been told that if this is MS or something of the sort, the lesions may not have yet shown up on the MRI as it was taken so early.  Otherwise, there was no evidence of vertebrae being out of sort or anything else unusual. I've had all the usual testing for lupus, lyme, cbc, ANA, sed rate, etc. Everything has tested normal and the neuros just shrug their shoulders and say they don't know.  Being a 33 year old female, this has left family planning and the future in general much in question and of course leads to more anxiety.

[for-science]

Brando - I can't offer much, but I do know something about blood sugar problems and it wouldn't surprise me if that one incident  - especially since it was a one time occurrence - were brought on by low blood sugar, and even more so when you combine it with anxiety - which does mean things to people.  If you were 'relaxing' in the dentist's chair - my hat's off to you! I don't know much about the other symptoms, but the myoclonic jerks interest me.  Do you have any deja vus?  

In fact, that's why I'm on this website.  It seems to be nearly impossible to actually post a question.  (You must be very persistent, Brando.)  I don't really need to talk to a doctor, but I would like to find a contact in similar circumstances for my son to compare notes with.  He is an otherwise healthy 13 year old who had a couple of life threatening experiences as a child - a near drowning and a fall on his head onto cement.  He experiences frequent (up to 6 per day) myoclonic nonepileptic jerks.  They are scary to his Mom, but ptherwise don't seem to interfere with his life.  He also has frequent deja vus.  He is doing a science project on the correlation between the two, and his teacher wants him to have more evidence than just his own chart.  Is there anyone out there who is in a similar situation?  Even myoclonic epileptic jerks in conjunction with deja vus would be helpful.  Good luck to all of you with your challenges.  If we could just figure out a way to get rid of the anxiety...  Thank you.

[090308health]

Hey all. I have had undiagnosed neuro symptoms too. Mine started in Aug. of `02 after the birth of my baby. I`ve had tingling, numbness, twitching, buzzing sensations, cramps, tendon tightness, right eye pain, a cold sensation in left shoulder blade when bending over, and other strange sensations all over. Seen 2 neurologists, tests were normal. Haven`t been to a neurologist in a few months though. I have no diagnosis. I`m going to go see a rheumatologist soon though. I PRAY I`ll get some kind of help or diagnosis. Anyone else w/ similar problems feel free to email me at: ***@**** thanks....

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

There are two systems that have to be checked regarding passing out or near passing out spells. The first is the heart. It sounds like you have already had most of the tests. The only test you did not mention is a prolonged tilt table. This can help diagnosis conditions such an orhtostatic hypotension, postural orthostatic tachycardic syndrome, or vasovagal disorders.

On the neurologic side of things, a low blood sugar could cause someone to loss consciousness, also a loss of blood flow temporarily to the brain. An imaging study of the blood vessels of the neck would be helpful to rule out stenosis. Another disorder which can cause a loss of vision and a passing out sensation is a seizure. Although as you describe it, it does not sound like a seizure. You should discuss these possibilities with your neurologist. Good luck.

[Brando]

I do have twitching all over, but it generally occurs just during one of my relapse phases (which lasts anywhere from 4 to 6 months at a time, with a remission period of anywhere from 6 months to a full year in between). The twitching didn't start until my 2nd flare-up. My first one was mainly extreme nerve pain (burning) and tingling ...first localized to my legs and/or feet and then migrating throughout my body w/ some shock sensations as well. I too battle with anxiety, but the symptoms began first and not being able to get a diagnosis and living with the unpredictability have amplified the anxiety with each relapse.

[allsherote]

I have all of the same things going on with me and so far the only thing that keeps coming up is that I have major anxiety. I have panic attacks. I go to the neuro Friday and that is the only thing left undone, however my PCP thinks the neuro exam is not necessary and that it is anxiety. Do you twitch all over? None of my symptoms started until I started having panic attacks and then I worried about the symptoms which I think is feeding off of itself and making them worse. Good luck.

[Pamella]

Hi,
I have had these 'attacks' I call them, for about 20 years. They are always close to the same, but a bit different here and there. First, I feel great all day like I'm gonna have a really good day. Then all of a sudden my eyes act up get kind of blurry, cant seem to see correctly, cant really explain it, except it seems to be wavy lines and things look different. A couple of times my mouth and hands would go numb first my mouth, then one hand at a time. Then I had trouble remembering anything about the simplest things, peoples names- of people I lived with etc.. Then my head would start to crush. Bad headache. Had to close my eyes for a couple hours, and try to go to sleep with the pain. Slowly over the years the attacks still happen, but seems to have gotten a little milder. Not real bad headaches, And sometimes I dont experience the numbness at all. I found that sometimes when I took sinus medicine it would clear up right away.But now if I take baby aspirin as soon as the attack starts, it seems to go away faster, but I have to take about 5 of them or 2 regular ones.  And now I just take omega fish oil 3, and co Q10. I realize that this may be just a migraine headache, but Sometimes I feel like it is much more than that. One doctor told me once it was a migraine and acted like it was nothing, but I dont like forgeting things. I dont know if this has anything to do with anything, but I was bleeding internally when I was a baby and almost died. My IQ is very high and unless Im done with an attack I dont usually have a problem with that. When I am done with an attack, I feel drained and cant remember much for atleast 4 or 5 hours. I can remember some things but forget others. Help! I dont want this to happen any longer. Also, my son who had a ventricular bleed when he was born has some blacking out and short term memory loss at age 20, and complains that he sees things that arent there. Any ideas on any of these two subjects would be very helpful. Thanks- Pamella