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Undiagnosed Neurological symptoms<--can anyone shed some light??

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Old 06-23-2004, 05:45 AM   #1
daniel Craig
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daniel Craig HB User
Undiagnosed Neurological symptoms<--can anyone shed some light??

greetings fellow forum people...u want a challenge ?? see if u can try and offer me any advice on what direction i could possibly look in for help pertaining to this hellish situation ive got myself into....

My Story starts when i was 12, i had a fall and landed of my upper neck joints..i remember losing all feeling from my neck down for at least 60 seconds ..then luckily for me ..all feeling returned to my body .,being a typical 12 year old .the next day it was like nothing ever happend and i was my usual spritely self, i wasnt even sore....

THEN,,,when i was 19 years of age i foolishly took a mere half a tab of LSD,,and it didnt affect me mentally, but 20 minz after ingesting the drug my neck joints were in alot of pain,,,this lasted 8 hours till i went to sleep ...

The next day,,the pain had subsided...

2 weeks later i started to feel a tiny pin *****, a kind of pinching inbetween my 2 of my neck joints,,,this pin ***** sensation over the next few days grew until one night felt a week later it felt like someone was sticking a knife inbetween 2 joints of my neck....wierdly enough the next day this pain subsided and was replaced with stiffness and soreness instead...Then one week later i started to get tiny muscle spams / tremors in my legs n arms,,and i noticed it was becoming harder and harder each day to ride my pushbike...

Over the next few years these muscle spasms grew and started to attack every single muscle in my body ,,,from head to toe...i grew weaker and weaker left hand side was weaker originally therefore it has bore the brunt of the weakness....after around 5 years of this in my mid twenties i started to wake up with numb hands, typical carpel tunnel type symptoms..the stifness in my neck seemed to grow as well....i get sharp needle like pains and some kind of "creaking" sensation (like a door) in those neck joints where it all started,,

IM now 29 ,,,All my scans, MRI, CT and x-rays are all CLear...apart from a slight curve in my spine, which is the result of 10 years of muscle weakness around the spine not holding it in place any longer..Ive seen countless neuro's and other specialists,,ive tried acupuncture and massage ,,chairopractic and physio..all offering not one bit of releif to my problems....i did a Detox dietf recommended from a natropath, and although i lost some weight,,,i still deterioated in the same manner...One specialiast seems to think i have pinched nerves,,,but as nothing shows on MRI scans ,,he can not operate to releive the pressure...My left hand side of my body is becoming useless, and obviously im depressed and anxious as i fear not being able to move within the coming months.....i am on anti anxiety meds, have been for the last 3 years...and i take baclofen to ease the cramping of exhausted muscles...thats the only thing i seem to be able to control...the cramps ...but the actual spasms are servere,,,my entire bicep or tricep u can see shuddering and pulsating..same applies to every other muscle in my body ...

ok,,,now does anyone know where i can look for help as i seem to have looked everywhere....

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Old 08-03-2004, 01:10 AM   #2
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sissylisa HB User
Re: Undiagnosed Neurological symptoms<--can anyone shed some light??

have them check you for a b-12 disorder called pernicious anemia

Old 08-17-2004, 06:15 AM   #3
daniel Craig
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Re: Undiagnosed Neurological symptoms<--can anyone shed some light??

haha 300 odd views later someone replies ...thanking u ...ill look into that

Old 09-05-2004, 09:13 PM   #4
Join Date: May 2004
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PatNJ HB User
Re: Undiagnosed Neurological symptoms<--can anyone shed some light??


How about one other reply 440-something views later??!! LOL

I don't envy you your symptoms. Constantly wondering when the next wave of spasms or cramping will occur must be an emotionally draining ordeal, only compounding your physical pain and incapacitation.

I noticed in your list of the diagnostic tests that you have had performed, that you have not had any EMG studies, myelography, or muscle biopsies. Have you been seen by a neuromuscular specialist, or only general neurologists?

I found all sorts of interesting and possibly pertinent info upon entering "unexplained muscle spasms" into a search engine. Other tests including serum measurements of potassium, magnesium, and muscle enzymes might be helpful, as well as thyroid and parathryoid function tests, and kidney function tests. Possible diagnoses to pursue might be muscular cramp fasciculation syndrome (although I think this does not involve weakness of the affected muscle(s), myokymia (I found this one particularly interesting because its hallmark is the visual evidence of the rippling of the muscle while in spasm), mitochondrial disease, motor neuron disease, myotonia, and many more that I should have written down and not relied on my so-called memory to remember.

I suspect that your quest for a diagnosis has just begun. I know how frustrating that sounds, but I also know from experience that not knowing is worse than just about anything else.

I don't know where you live, but please try to make an appointment with a neuromuscular specialist at a teaching hospital, if at all possible, even if it means having to go out of state. In the meantime, you might want to do some online research to see if any of the many neuromuscular and muscle diseases seem to "fit" your own history and symptoms.

Actually, if you haven't already done so, you might want to start with the Resource Links section on the HealthBoards home page. I like NIH's website, which will give you to a link to MEDLINEplus, which in turn offers a lot of info about just about every imaginable health condition, in one easy-to-navigate place.

I do wish you the best of luck. Above all else, please do not despair!


Old 11-19-2004, 09:35 AM   #5
Join Date: Nov 2004
Posts: 1
kenworthless HB User
Re: Undiagnosed Neurological symptoms<--can anyone shed some light??

There is a nurological disorder called Dystonia which has similar symptoms. It is among a class of disorders that include Spasmodic Totricollis & cervical Dystonia. This can be degenerative, and it is fairly unknown in the medical community. [ removed ]

I hope this helps lead you in the right direction.

Last edited by moderator2; 11-26-2004 at 07:23 AM. Reason: do not post websites with bulletin boards

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