Misdiagnosed

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Misdiagnosed

Postby Misdiagnosed » Mon May 05, 2008 9:01 pm

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.
Last edited by Misdiagnosed on Tue May 06, 2008 5:00 pm, edited 5 times in total.
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Postby cheerleader » Mon May 05, 2008 9:47 pm

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Nenu » Mon May 05, 2008 10:25 pm

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.
Dx RRMS March 5, 2008.
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Postby cheerleader » Tue May 06, 2008 7:04 am

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
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Tue May 06, 2008 7:43 am

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"


Group A Group B

Calcium 600-1000mg Magnesium 300-500mg
Iron 25-60mg Manganese 25-100mg
Chromium 500mcg-2000mcg Copper* 3mg-6mg
Potassium 100mg-500mg Zinc 25mg-50mg
Vit B1 100mg-300mg Vit B2 100mg-300mg
Vit B6* 100mg-500mg Vit PABA 100mg-400mg
Vit C 1000mg-3000mg Vit E 400IU-1200IU
Vit B15 100mg-400mg Vit B12 250mcg-1200mcg
Lecithin 1200mg-2400mg Choline 250mg-750mg
Cat's Claw 1000mg-2500mg Turmeric½ + teaspoon
Apple cider vinegar with water Baking soda with water
Caffeine Alcohol
Decrease oxygen Increase oxygen

* Larger amounts of Vitamin B6 or copper should not be taken on an ongoing basis.

One can either use trial and error to determine what group applies for a specific individual, or previous experience with for instance caffeine-containing beverages might be of help --- of whatever effect they
had in improving or worsening one's headache.

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]
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Postby Artifishual » Tue May 06, 2008 7:45 am

Nenu i'm with you in doubting my dx. No history of ms or any neuro disorders in family. Besides I live in Tx and stay in the sun for what that is worth. Also I am missing a certain marker for ms in my spinal puncture. I guess all I can do is trust the dr for now.
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Postby jimmylegs » Tue May 06, 2008 8:02 am

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]
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Postby Artifishual » Tue May 06, 2008 8:08 am

Not sure homeskillet, I just remember my neuro saying that I was missing a definte marker in my lumbar puncture. Maybe I'll call to see if I can find out.
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Postby Artifishual » Tue May 06, 2008 8:10 am

Forsure I had the lessions on spine and some white spots on the noggin, but he said who's to say that we all don't have these white spots. The spots on my brain were small and few.
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Postby Nenu » Tue May 06, 2008 8:34 am

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?".
Dx RRMS March 5, 2008.
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Postby jimmylegs » Tue May 06, 2008 8:43 am

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.
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Postby Artifishual » Tue May 06, 2008 8:53 am

Good ? Homeskillet. I'm not sure of the location of the lessions. As for the white spots on the brain I think there were only two or three small ones. That is why he said that he wasn't sure if everyone didn't have them. As a matter of fact if my memory serves me right he made a comment about the first use of mri and that people were randomly choosen for mri and there was a significant amount of people with no symptoms that had these little dead zones on their brain.
My last two mri should no signs of new lessions.
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Postby Artifishual » Tue May 06, 2008 8:59 am

Just got off the phone with my dr office and requested the name of the marker in question. Thanks arti
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Postby jimmylegs » Tue May 06, 2008 9:24 am

man sounds like they barely have enough to go on with your dx huh. verrry fishy. i'll keep an eye out for update :)
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Postby Artifishual » Tue May 06, 2008 9:39 am

I have allways been suspect of my dx. Maybe he went with his gut here. Whats a person to do though? With all the problems I had been having it seemed to fit espicially with the ms hug and vision problems. Also I still get very weak and unbalanced when I over heat. Maybe I'm just a big pus?
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