Misdiagnosis of MS??

[Kleiner]

Just wanted to throw this out there...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...they see some lesions and without any other ideas for a diagnosis they just jump on MS?? (I.e. is CCSVI something that is its own animal without neccesarily a link to MS?)

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.

Thanks!

[Interrupted]

Mine's a very blurred line between MS and CFS. No one can distinguish what's what or which is worse. They could be one and the same for all I know, the CFS side does seem more evident in terms of dominant symptoms.
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.

[IHateMS]

maybe...... maybe not.

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.

[Bethr]

Hi Kleiner, I'm sort of in the same basket. I am CIS (Clinically isolated Syndrome), my neuro said it was probably MS, as my sister was diagnosed 20 years ago. I had only one lesion, but it's placement corresponded with the loss of use of my right hand. I had serious fatigue, and stiffness and pain in my joints. I was kind of sent away at that point, with no treatment offered and just lived with it. I'd seen what my sister had been through and just thought I'd go with the flow. Sleep when I had to (every darn afternoon!), brain fog. Not much of a life.
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.

[shye]

Kleiner-
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!

[David1949]

You could also go for a spinal tap. That's not something I recommend for entertainment, but if you really want to know, that would probably do it.

[Cece]

Spinal tap is not conclusive. Mine came out clear but I still got the diagnosis....

[PointsNorth]

My neuro said years ago that a spinal tap was of little use in MS diagnosis. He worked at an MS clinic for many years and this was his experience. From my point of view it was a great excuse for not getting one!!!

[costumenastional]

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...

NOooooooo.... what gave you this crazy idea?

[eve]

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

[shye]

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.

[Johnson]

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.

On top of it being inconclusive, it exposes the CNS to exogenous pathogens. (and I hear that it hurts)

[Bethr]

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

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!
Let us know how you get on with your testing.

[David1949]

I was originally diagnosed with MS 14 years ago by MRI. Seven years ago my family physician suggested getting a second opinion since my symptoms did not seem to be following the usualy course. So I went to a second neuro. She said the MRI is not always conclusive so she sent me for a spinal tap. That came back positive too. When you have a combination of positive results on both the MRI and the spinal tap, then I think you're stuck believing that you have MS.

[eve]

In APS/Hughes both issues (mri and spinal tab) can be positive too which is one of the reasons that I want it checked.

http://rheumatology.oxfordjournals.org/ ... 4/434/TBL1