This Is MS Multiple Sclerosis Community: Knowledge & Support

I was misdiagnosed with multiple sclerosis instead of the correct diagnosis of brainstem stroke. I had been on Copaxone for the four years of my misdiagnosis. About the fifth week of taking Copaxone, I developed a almost constant head tremor. (Dystonic No-No) It appeared as if I was shivering or repetitively shaking my head no very quickly. My quack neuro said that it was a symptom of my MS. I tried a variety of meds and used Botox injections in my neck every 4 months with some improvement.

I thought I would have a tremor for the rest of my life and that it was caused by the blood clot.


But, I have been off Copaxone for 8 weeks now and my head tremor is GONE. I mean not even. I am amazed. It has been so embarrassing and fatiguing these past four years. I also now have a regular menstrual period which I didn't for the years I was medicated.

Does anyone have any information about Copaxone and Tremors? I see from the pharmacy website, that tremor is a rare side effect. But a severe disabling tremor??? Has this happened to anyone else? Please let me know if you know where to find information on possible harm done taking copaxone when a person does not have MS.

I am in shock....

Also everyone of you had better get a blood test for antiphospholipid antibodies so my plight has not been in vain!!

I have no answer for your questions, but am appalled at your misdiagnoses and incorrect medication.

So much for starting patients out on a CRAB soon after diagnosis!

Hope your life turns around for the better soon.

gwa

Misdiagnosed has posted his/her story here on the boards here-
http://www.thisisms.com/ftopict-5526-.html

Misdiagnosed has Hughes Syndrome, not MS-

"Hughes' syndrome (the antiphospholipid syndrome (APS)) presents with recurrent thrombosis, recurrent miscarriage and neurological disease. The major pathogenic mechanism of the syndrome is vascular obstruction (both venous and arterial) due to hypercoagulability. Neurological manifestations are prominent and are often the dominant feature. Headache, migraine and cognitive dysfunction are common while other manifestations such as dementia, epilepsy, chorea, multiple sclerosis (MS), psychiatric disease, transverse myelitis, ocular syndromes, sensorineural hearing loss and movement disorders are also associated with the syndrome. Anticoagulation therapy (either aspirin or oral anticoagulants) can lead to significant improvement."

I would hope that the anticoagulant therapy has helped you, Mis.
Perhaps it was because of Hughes Syndrome that you had the tremors, and this new therapy has helped you? I haven't read about anyone else on the boards suffering from tremors due to Copaxone. I think you need to take your energy and go after the doctors who misdiagnosed you, instead of looking for answers in an MS forum. You may have a malpractice case!

Wishing you healing and all the best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I highly doubt that a baby aspirin once a day has cured 4 years of dystonic head tremor.

I would like to know if anyone else has developed tremors while on copaxone.

I've been on Copaxone for 8 years - no tremors.

Copaxone for three months and no tremors.

cop 11 years no tremors. Had a full panel of APA etc- I wish it was hughes! Not for me though it is the old MS.
Good luck Misd.

Had tremors years before MS diagnosis and use of Copaxone. Went away for a while but are back sometimes. I don't think it has anything to do with the Copaxone. I attribute it to MS.
Lori

Copaxone 5 years (or is it 6?!!) no tremors.
Also tested for APS no luck, just plain old MS.

This is late but I started copaxone in feb. 2008. My cycle is very regular (nick named 'fertile Mertile') and was over 3 weeks late when starting copaxone--pregnant?? I am married but had a tubal ligation 3 years ago..not pregnant--late from copaxone!

I do not dream now--NOTHING. Just wake up in the morning.

My daughter started on Copaxone when she was first diagnosed. No tremors but she go so ill I thought she was going to die...literally! She only stayed on it about 6 weeks. She is still thriving (3 years later) after going on a natural treatment for strep bacteria infection. (I shared her story her when she first started the treatment.)

So thrilled you do not have MS! Hope you continue to thrive.