This Is MS Multiple Sclerosis Community: Knowledge & Support

I was misdiagnosed for 4 years with MS by two different neurologists. Original ER Neurologist Definite MS, 2nd neuro, probable MS. 2008, MS specialist Dr. Michael Olek recently completed a battery of various tests and has correctly diagnosed me with having had a brainstem stroke.

PLease have your doctor do a antiphospholipid antibody blood test. Basically this is to find out if you have blood that clots too easily. I do, its called Hughes Syndrome. This can cause strokes in very healthy young people and if the lesion or damage is in the brainstem, or the stroke is just beginning, it is difficult to pick up on a MRI. I'm still in shock.

My advice, obtain all your official medical reports NOW and read through every test and impression, research noted medical sites yourself. I now see how my neuro overlooked everything that didn't look like MS to diagnose MS.

Our bodies, and doctors are imperfect. If you are looking for emotional support and have too much time on your hands, forums are the best, but if you want medical answers, get your medical records, don't have them faxed..... and bring these to each doctor with your concerns noted. And spend the money to go to several doctors.

I hope this helps someone, anyone, not have to go through I hell I have these past 4 years.

Dear misdiagnosed-

Sounds like you've been to hell and back. Thank you for sharing your experience with us. If there is any silver lining to this trial, it is that you can help others and get the word out about Hughes Syndrome. I was not familiar with antiposholipid syndrome, but it appears to be pretty easy to diagnose with a blood test. Headaches (not a common MS symptom) and/or miscarriage might be the red flags....


"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."

continued healing of your body and spirit-
AC

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

Wait, headaches are not common with MS? Oh oh... seriously, I suffered headaches almost daily, and then after my steroid treatment, the headaches have been gone since. I have been a long time migraine sufferer, and I finally have a period of relief from them.

In other news, wow that's an ordeal you went through for your final answer. I really hope that I, or others, don't go through the same thing. I still often doubt my diagnosis, but I have to trust the doctors until otherwise proven incorrect. I guess most of my doubt lies in the fact that my family has no history of MS, but as we know, your family does not need MS for you to be diagnosed with it.

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Dx RRMS March 5, 2008.

Nenu-
One difference...Steroids helped you. Mis-D gor worse. But as a precaution, you could take a baby aspirin a day, and ask for this antiphospholipid antibody blood test, just to be sure. Migraines can also be related to hormones, not just vascular issues.

I take a baby aspirin a day, recommended by my GP, since I'm a past migrainer with circulatory issues. I've never had the test, but there's no special cure, anyway. Just the baby aspirin-

AC

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

hey i went looking for migraine nutrition info which i'm sure as sufferers you've seen before, but i may as well post it in case of use to others.

and i ran into a hint of something that i was trying to remember about nutrition for symptoms on one or the other side of the body. very interesting.

i'm guessing that stuff you use to treat pain on one side of the head might feasibly affect other symptoms of neuropathy on the opposite side of the body? because of the crossover? "Sensory and motor nerve fibers connecting the brain and the rest of the body cross over to the opposite side as they pass through the medulla"



http://www.acu-cell.com/dis-hea.html

it's a bit of a squirrelly read if you go through to the link, with no citations, but i think one could find a fair amount of support for the assertions on pubmed.[/quote]

hey arti! do you mean you don't have the o-bands?
crap my table came out awful, guess you have to use that code dealie[/i]

Well, I had the o-bands in my spinal fluid, the lesions on the MRI in the 'MS locations' and I tested hyper/hypo in upper/lower body, as well as having an 'unsteady gait'. The 3 tests definitely confirmed it, but then I have something like burning mouth which some say is not an MS symptom. Which then gets me wondering "Did they actually rule everything out here?".

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Dx RRMS March 5, 2008.

arti it'd be interesting to see what isn't there in the csf exam. if there's no o-bands that means no chronic inflammation so if ms is an inflammatory condition what's their deal?? i know they say it's not every ms patient that has o-bands so what is that, the non-inflammatory variety of ms? sounds fishy.
arti which vertebrae had your spinal lesions? or areas at least? cervical and thoracic/dorsal i'll guess?
my brain spots were small too, but they're not supposed to dx ms without at least 10 brain lesions, i think. that's what they were going for when they dx'd me, anyway. you reckon you had lots less than 10 brain lesions? all kinds of people who don't have ms have lesions found on autopsy so i don't know exactly how relevant they are. except i can feel when this specific one of my brain lesions is acting up, it's annoying.
hey nenu, i don't think they ever rule everything out. you just kind of fit into the grab-bag labelled ms and they don't ever get down to the nitty gritties of why... so, you can figure out what might be at issue at the smaller scale... sometimes you can have a totally different problem at the same time as your ms which can turn up odd symptoms. in my case it was carpal tunnel as well as ms, plus all these stupid deficiencies of one sort and another.

man sounds like they barely have enough to go on with your dx huh. verrry fishy. i'll keep an eye out for update
HSJL