My symptoms started about 7 years ago with slight dizziness, and some tingling in hands/feet. I went for every test out there and eventually was sent to an MS Clinic. The MRI there showed 5 brain lesions and 1 lesion on my spine which has since disappeared. Over the past few years I have noticed slight balance issues, cognitive issues and fatigue to go along with constant dizziness. My last few visits to the neurologist has ended with the same comment...I am "pretty sure" that you have a mild form of MS but it is positive that it is not progressing and it's not bad enough at this point to warrant any type of treatment...see you in year!
Was just wondering if others had the thoughts that what they have may not actually be MS but something completely different. This whole CCSVI has really got me thinking about this since the majority of my issues appear to be more cardiovascular than neurological.
Just wanted to see if anyone else is in the same boat.
I personally believe MS, CFS/ME, Post Viral Syndrome and possible even Fibromyalgia can be so similar it's hard to distinguish. Though I guess if the lesions show and the lumbar puncture positive, MS as part or whole is confirmed.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
after 12 years, i have zero brain lesions. in 1998, i had two spinal lesions and ZERO brain lesions. in 2008, no lesions anywhere. spinal lesions can 'disappear', as they are hard to see.
i said all of this to say.... here i sit in a wheelchair. i think your neuro is wrong to call your ms mild based on your lesion load and mild symptoms.
your symptoms seem neurological to me, not cardiovascular... i have the same symptoms (guys tend to fare worse tho-and i am five years further into the dx).
then again, only the last two years has the term vascular (ccsvi) been widely linked to this disease. i am a firm believer in ccsvi. i think vascular problems do cause neurological problems/deficits.
My primary Dr. from that point seemed to attribute all my symptoms to MS and did not look further. I had a label even though I didn't have a diagnosis!
Eventually, two years down the track I'd had enough, and looked into things myself, got hold of all my old blood tests to see what had been going on when I had my first attack (Dr. didn't like that request much!).
Too bad! And found I'd had a mild iron overload over the whole two years, I then asked to be tested for the hemochromatosis gene and had one copy C282Y, which would account for it. My mother and cousin have hemochromatosis. I also had consistently high hemoglobin which I'm attributing to my smoking, which causes lack of oxygen in the blood.
Sounds like similar problems to CCSVI. Iron deposition and thick, de-oxygenated blood.
So on from that, I saw a hemotologist whose only advice was to donate blood. Saw my neurologist, who thought it would be a good idea, (and who then changed his opinion on my MS, the latest letter saying I DIDN'T have MS), whereas the earlier letter said I probably DID.
I've got rid of my iron overload, almost down to anemic now, after 1.5 ltrs of donations. And I'm feeling so so much better.
My hemoglobin is still high, so it's giving up smoking time!
I also saw a rheumotologist and dermatologist as my other symptoms are hyperpigmentation on my arms and bullous rashes my whole life.
They think I possibly have Porphyria (a problem in the creation of heme/blood synthesis). Makes no difference as one of the treatments for Porphyria is blood-letting.. Done!
If I hadn't taken the bull by the horns, I'm sure I'd still be languishing on the couch with a MS label hanging over me.
I have the diagnosis MS from ophthalmologist/neurologist--did have severe optic neuritis years ago, and now the symptoms you have and more--and numerous lesions in head, but none in spine.
But the MS neurologist (and the MRI radiologist) said could be MS or microvascular disease.
And, as with Bethr, found my iron a bit high, got gene test, and am homozygous for H63D (hemochromatosis gene), so donated blood, and this greatly helped relieve fatigue.
Also decided to undergo EDTA chelation re: the vascular posiblilty--have recently stopped the Chelation (some of my minerals, esp zinc, went TOO low), and will get an ultrasound of carotid artery and abdominal aorta re: any calcification (re: therefore indication of a vascular problem).
So, yes, plenty of chance for misdiagnosis, for sure!
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NOooooooo.... what gave you this crazy idea?Kleiner wrote:is it possible that there are a lot of people who have been given a diagnosis of MS that may actually be something different, just because the neurologists don't know what else to call it...
On top of it being inconclusive, it exposes the CNS to exogenous pathogens. (and I hear that it hurts)shye wrote:When I saw the head neurologist at Mt Sinai MS Clinic in NYC, Dr Arron Miller, he said the spinal tap was not a conclusive test--get false negative-positives with it--so he advised against it in any determination for me.
That's interesting Eve, as I have the thick blood, and also experienced chorea back in January this year. You can get chorea with polythycemia (high hemoglobin) also. It looked like I was conducting a symphony!eve wrote:Actually I have been talking bout this with my neuro. I am having my blood checked for Hughes/APS. http://www.hughes-syndrome.org/symptoms.htm
Let us know how you get on with your testing.
http://rheumatology.oxfordjournals.org/ ... 4/434/TBL1