mark one year

[Slavin Balen]

My one year of twitching story. I am still alive and (not very) well.
Recapitulate:
Twitches started on 1st March last year on right eyelid. Done my first neuro exam. All were good and normal. After 2 weeks my right biceps exploded. And I discovered miracles of Internet. For the first time I heard about ALS. Another exam and gone to the hospital. My second Neuro ordered a lot of exams and tests including EMNG. All were good, normal...except mild radiculopathy in c4/c5/c6 sections. Meaning I have CB Syndrom. Anxiety as DX. Feel the pain and subjective weakness in my right arm. I took SSRI without any improvement. Klonopin did.
In May fasciculations spread into my legs. Feeling like soda or popcorn in/on my skin. No weakness. I can lift things, doing push-ups, squats etc.
In July my first Neuro, very old and clever doctor, saw some fasciculations on my back. Send me to another EMNG. Nothing wrong; I feel very comfort but for very short time. Cramps in legs appeared. And gone after special drinking regime (i.e. 2-3 liter in small amounts).
In August I've done Elisa, PCR DNA, Echo and Polio test; all twice. Lyme desease ruled out. I doubt on it because I'm living in VERY infective area and were bitten 2-3 times two years ago. I read things about LD and I'm thinking that my problem exists due to borrelia burgorferi exposure. In September legs cramps again. After that I never felt cramps. New EMNG done in another country by another specialist. The longest exam ever (one hour and 45 minut.). In October one more Neuro doctor. She is top specialist in NMD in my town. She is convinced that I am nervous and stressful person. Another round of Klonopin.
In December eyelid twitching increased plus needles and pins on face. In February 2005 I can feel mild rectal twitching (sic!). Last exam were 7 days ago (normal).

What happened BEFORE twitching:
In 2002 I was 3 times bitten by infective ticks. Late this year for the first time in my life I can feel dizziness, tinnitus, vertigo. Fear of Morbus Meniere...of course nothing happened.

I am 48 years old.
Slavin (Croatia)

[amy_twitch]

I'm no tick expert, but ticks can infect you with diseases other than lyme. I think Stephanie has discussed mycoplasma (sp?)....and I'm pretty sure it's a tick-borne illness. Did you doctor rule out all the tick-borne illnesses...and not just lyme?

I hope you feel better soon.

Amy

[Slavin Balen]

Doctors ruled out all ticks desesase including mykoplasma. I've been tested on it in September. Negative.
Slavin

[Stephanie]

Blood tests are not reliable to diagnose Lyme. It's mostly a clinical diagnosis and sometimes a Dr will put you on AB's like Doxy just to see if there is improvement. There are other tick diseases besides Lyme. Western blot is a much better test than Elisa. I wouldn't even bother w/Elisa.

[joeyata1]

slavin you live in crotia? is it easy to find mri machines and neuro doc's. hell with all the doc's here who think we're quacks with twitching i can't imagine what you've gone threw

[Slavin Balen]

I have done several CT and MRI tests almost one year BEFORE twitching i.e. during 2002/2003 including CT of brain, CT of inner ear (Pyramid), cervical MRI, brain MRI. Except congenital c4-c5-c6 damages everything were normal (due to my age). No signs of PD, MS and of course ALS.
But...I'm twitching a lot.
I have more or less 10 different specialists (5 Neuros). I'm doing very stressful job on local radio station as musical editor and D.J. plus concert promotion.
Sincerely, Slavin

[Slavin Balen]

Chron's Desease in initial state (phase) may produce twitches acording one of my specialist. I don't have CD. SCRP shows possibility of CD.
Mine is 3.8 mg/l (reference value up to 5). CEA 2.09 ng/ml (up to 3.40), CEA 19-9 4.28 (up to 39.00).
S-CK and S-LDH show NMD possibilities.
Mine are S-CK 121 (reference below 205 for Male) and S-LDH 197 (reference below 248).
Slavin

[eric]

slavin it is eric again, do you have twitching of the face as that is only seen in lyme disease! if yes talk to a doctor about lyme disease and antibiotics, if you take a low dose of antibiotics it will not work and you will be on them off and on for 2 to 4 years, let me know if you have face twitches.
eric

[Slavin Balen]

Yes, last months I have much more face twitches. On the cheeks, in my nose, 3 of four eyelids, around my lips. Pins and needles effect.
I know that in this phase it's not possible to cure LD immediately (If I have LD). Treatment must be IV months and months, even years. It's not so easy. I think twitching is better way to live with than to ruine my stomach or bowels with antibiotics. Maybe I'm wrong?
Slavin
P.S. 1 year, 3 days...of twitching

[eric]

you can do orals in high dose! you dont need iv and only if you dont respond to doxy,
eric
ps the infection sounds to be in your trigeminal nerves of the face I would do something now, i feel so bad for you because you are stuck, read as much as you can and take your health into your own hands,
eric

[dave y]

slavin it is eric again, do you have twitching of the face as that is only seen in lyme disease!
eric

Eric,

With all due respect, I find that to be a very questionable statement not supported by anything I've read or heard from my neuros or doctors. Can you cite any medical literature about that?

[eric]

with all due respect I think that this board is a board of no hope, a board that tells everybody that they will be ok even though they are clueless to what is going on ,I told you that face twitches are seen in tick born and infectious diseases,slaven balen in my opinion has a problem, neuro's know nothing about tick born disease and that is a fact and that is where alot of people on this board are stuck.if your bfs was benign why are you on this board?why do you try to kill other peoples hopes and health? why do you think that you are going to find the answer in some medical literature?

DO YOU REALLY FEEL THAT YOUR BFS IS BENIGN?
the above is the question of the day and you must answer it truthfully, i feel that you are in conflict..

[Stephanie]

People with Lyme disease that twitch usually have facial twitching, but not all facial twitching is caused by Lyme.

[eric]

it most be caused by something,

[Slavin Balen]

Due to all tests, lab exams, several Neuros and other doctors I am almost 100% sure in LD etiology. Nobody believe me except you Eric, Stephanie... I have an appointment 3/24 in Slovenia with one of their most prominent LD specialist.
My eyelids twitch a lot, tingling & pins and needles on my face, 24/7 twitching in legs. No weakness; I think so.
I heard that is impossible to cure patient after 3 years of tick's byte!?

Slavin