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Old 09-24-2012, 12:55 PM   #1
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Getting a Diagnosis

Hey everyone,

About 2 months ago I started having some symptoms that I eventually realized were all symptoms of MS. The first one was an intense pain all over my ribs, worse near my sternum. It hurt to touch, cough, move, or lie on my side, and the pain didn't begin to go away until two days later. A few days after that I noticed that my feet and legs were constantly falling asleep. Then about a month later I also started having tingling, pins and needles, "shocks", my legs started getting sore easily, knees hurt once in a while, etc. Now my toes seem to be tingling constantly, and I also started having more pain in my hands. There are also days when I feel completely exhausted.

Anyway, I'm not trying to get a diagnosis online, I just want to know what the normal procedure is for getting a diagnosis. Right now I've only taken a blood test which showed normal B12 levels. My primary doctor now wants me to do a Single Fiber EMG (which does not seem to be a normal EMG). I didn't realize what it was until I got home and researched it, and from what I understand it's really only useful for people who have symptoms of MG. I am definitely willing to get as many tests as necessary, but to me this seems completely useless (especially considering the cost and the pain from the needles). From what I understand, and NCV and an MRI would be much more useful. Has anyone else done a Single Fiber EMG? Could you tell me more about the tests you took to get a diagnosis?

Thanks so much!

Alice

 
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Old 09-24-2012, 01:04 PM   #2
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Re: Getting a Diagnosis

Welcome.

The symptoms of MS can be the symptoms of other diseases. Because of the potential for mimicry, the doctor first needs to ascertain whether your symptoms are neurogenic.

For the diagnosis of MS, the MS Specialist (a neuro whose specialty is MS will follow the Revised McDonald Criteria. You can find this online. MG has specific tests, BUT MS does not have a single specific test available. The diagnosis is made by a process of eliminating MS Symptom mimicries from among many diseases. IF everything is eliminated, then you should be diagnosed with MS.

Is this what you need to know? Again, Welcome!
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Old 09-24-2012, 01:13 PM   #3
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Re: Getting a Diagnosis

Thanks for the information! I did read that online, I was just wondering what the general procedure is for getting a diagnosis for these kinds of symptoms. I know it's not necessarily MS, I just wanted to know how to proceed now that I've ruled out vitamin B12 deficiency.

 
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Old 09-24-2012, 01:24 PM   #4
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Re: Getting a Diagnosis

The blood tests are often a preliminary look at your body. B12 deficiency as well as Vitamin D and any blood borne diseases should be tested and eliminated. If you have any nutritional deficiency, these would need to be treated to eliminate the symptoms caused by the deficiency.

I would ask your doctor why he is looking at MG as a possibility and if it is not MG, then what.... I know when I was diagnosed with MS, I asked for "proof" or reasons why. My neuro was more than happy to go over each piece of evidence with me. I hope your doctor will too!!
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Eternally blessed and eternally optimistic!<><

 
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Old 09-24-2012, 01:42 PM   #5
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Re: Getting a Diagnosis

Thanks so much for your quick replies, I really appreciate it!

Well, she actually didn't mention MG, but from what I saw online a SFEMG only seems to be useful for diagnosing MG. I didn't think to ask many questions because for some reason I assumed this was the same as a nerve conduction test, and it was only later that I realized it wasn't.

The reason I'm asking which specific tests I should take is because I'm currently abroad, in Italy, and I've never particularly trusted doctors here. I'm just trying to get all the expensive tests (especially MRIs if they're necessary) done here before I go to the US next month since they're much cheaper in Europe. I'm definitely going to ask her to clarify the reason for doing this test with her though, you're right!

 
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Old 09-24-2012, 02:17 PM   #6
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Cool Re: Getting a Diagnosis

Hey there...

Sounds like you are going the right path...the MRI both with/without contrast dye is very helpful to show MS lesions on your brain if they exist. I didn't have lesions for years to go with the symptoms but this time--holy cow...innumerable. I went to the Mayo clinic. They did extensive blood work to rule out lupus--SLE specifically--looks at IGG/immunity tests on the blood (they should do an ANA test first and if that's positive then do the rest of them). I can write you a list of the ones Mayo did but most were because my ANA was high...so you wouldn't want to get them unless yours is high.

The Mayo wanted to do a spinal tap on me but I didn't do it. It is helpful in ruling out Lyme disease and some other things...and most people have bands in them if they have MS but not all. I didn't do it because there is some evidence by Dr. Swank that spinal taps can cause a reaction in some folks with MS...although Mayo and my local doctor swore that wasn't the case.

The B12/D tests just check to see if you have deficiencies but if they were low--you would want to rule out pernicious anemia (B12)...if they are all normal that's of course good but it doesn't rule out MS.

My rate in Tulsa, OK for an MRI was about $1700 without the dye for comparison...at Mayo it was more like $2k+ with the dye.

Hope that helps.

Teresa

 
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Old 09-24-2012, 03:16 PM   #7
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Re: Getting a Diagnosis

There is another person, I recall, who was also in Italy and I believe her doctor went the same route.

The concern I would have is that you need to make sure that you are seen by an MS Specialist if MS is possible. They should also follow the Revised McDonald Criteria (latest version). Some countries do not have all of these standards and I can see that you will probably have to do more leg work than most people in the US.

If you have been in Italy for sometime, you should also be checked for Lyme disease which is carried by a different tick. Laboratories qualified for testing in Europe are few, but those which are qualified should be contacted by your doctor for testing to eliminate Lyme.

When you have your MRI, at a minimum, you should have your head and c-spine with and without contrast. If they would include your t-spine too, it would be great, but at the very least, go for the minimum. I would also ask for a VEP (Visual Evoked Potential), though you might be hard pressed to locate a facility outside of a university hospital or a larger facility.

The LP could be run there too, but I am not familiar with the practices in Europe. The LP will eliminate some possible causes BUT it is NOT a specific test for MS. In fact, of MSers who get an LP, 15% have a normal (negative) result.
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