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Old 11-29-2011, 08:55 AM   #1
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Is my Neurologist wrong?

Hi all, I know this is going to be just another person going through what appears to be the norm, but please read and offer suggestions.

I'll try to be brief:

3/28/11 during a shower I felt as if suddenly my right foot was tingly, and numb-ish. A few minutes later I felt as if that same feeling was traveling across my entire right side. So, ER, Helicoptor ride, another ER, negative CT,MRI, MRA, and negative cervical mri I went back with a dx of parathesia. Was given 6 wks stroke rehap therapy and by July I felt...better. Not perfect, just somewhat better.

Still had tingling but I think it was lessening. Then a week after an extrememly hot outdoor performance (I'm a musician), all the familiar symptoms suddenly became more present and.

So back to the ER. This fellow asked if I'd ever been checked for MS. I said that I did ask my primary for an MRI a year or two earlier and that a seemingly insignficant lesion was noted. He felt very confident that my returning symptoms were not a stroke and that I should be worked up for MS. So off to my Neuro who had said in May that a few more months and I'd be back to normal. Saw Neuro in mid Sept they got a new MRI still negative did some blood auto immune panel, lyme, seemingly the works. Plus a spinal tap. Two weeks after the spinal tap, I got the results

Here are the abnormal only findings:
CSF IgG Index 1.1
IgG, Syn Rate, CSF 14.1 mg/day
Glucose CSF 74
Total Protein, CSF 50.2
Nine(9) Oligoclonal Bands
No such bands in serum.
Nucleated Cell, CSF 10 cells/uL
Lymphs, CSF 91
Blood was good except for glucose which was 118

All other auto-immune was neg.

So neuro schedules EMG. Just got results spoken to me only yesturday. Carpel tunnel. A slight ulna nerve problem but not measurable. As well as nerve irritation I think they said on the outside of right leg. Which is probably caused by L5-S1 problem.

My problem is they told me so far:
No Stroke
No MS
Possible CIDP untill after EMG
Now it's Fibromyalgia.

I was willing to agree with treatment for that because along with all the tingling and the worsening numbness in my right toes and bottom of that foot, I also have been extremely tired. Kinda foggy and slightly dizzy and some mild nausea. So they gave me 15 day taper of prednisone and 30mg/day Cymbalta. I took the Cymbalta last night and by 3am EVERYTHING was worse! Right leg twitching like never before. I felt and still feel horrible. I don't think I'm going to take it again. I did start the prednisone this mornig, but I don't fear any problems as I've taken that before.

Anyway, I just feel like the neuro is afraid to say it MIGHT be MS, but to me it acts too much like MS....Thoughts?

 
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Old 11-29-2011, 10:45 AM   #2
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Re: Is my Neurologist wrong?

Is your neurologist an MS specialist? My sister went through a diagnosis of carpal tunnel and then Fibro. She rejected both and her final diagnosis was nerve problems caused by vertebrae compression.

Have you had any evoked potential tests? The VEP (visual evoked potential) is one that I have had.

If you do not subscribe to the direction the diagnosis is moving, I would get a second opinion because you have to advocate for yourself. Ask the doctor to show you evidence. The doctor should be following the Revised McDonald Criteria.

As you are in Ohio, the Cleveland Clinic is a great location if you need the second opinion.
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Old 11-29-2011, 10:56 AM   #3
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Re: Is my Neurologist wrong?

Hi,
Welcome!
I think if it is MS more things will show so they will be no doubt.
I went through 14 years of being told it wasn't MS but eventually if it is MS new symptoms will appear that can't be explained away to other conditions.

My advice is to eat healthy, try to get good rest at night and don't over exhert yourself or put too much stress on yourself (which I am sure is asking the unaskible from a musician)

I hope that nothing else appears x

 
Old 11-29-2011, 11:35 AM   #4
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Re: Is my Neurologist wrong?

Quote:
Originally Posted by MSJayhawk View Post
Is your neurologist an MS specialist? My sister went through a diagnosis of carpal tunnel and then Fibro. She rejected both and her final diagnosis was nerve problems caused by vertebrae compression.

Have you had any evoked potential tests? The VEP (visual evoked potential) is one that I have had.

If you do not subscribe to the direction the diagnosis is moving, I would get a second opinion because you have to advocate for yourself. Ask the doctor to show you evidence. The doctor should be following the Revised McDonald Criteria.

As you are in Ohio, the Cleveland Clinic is a great location if you need the second opinion.
I don't think she's an MS specialist.
No, no evoked potential. I'll look into it.
She quoted the McDonald Criteria as the reason she wouldn't say MS because of my single, old, lesion.
She's has explained her thinking process quite well and I have pointed back to CSF results and she can't explain them. In fact yesturday she minimalized them. That's the motivation for my post. To see what others think of my numbers.
Thanks for your reply

 
Old 11-29-2011, 11:40 AM   #5
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Re: Is my Neurologist wrong?

Quote:
Originally Posted by searchout View Post
Hi,
Welcome!
I think if it is MS more things will show so they will be no doubt.
I went through 14 years of being told it wasn't MS but eventually if it is MS new symptoms will appear that can't be explained away to other conditions.

My advice is to eat healthy, try to get good rest at night and don't over exhert yourself or put too much stress on yourself (which I am sure is asking the unaskible from a musician)

I hope that nothing else appears x
I appreciate your reply, but my problem is and has been that I don't feel well. I wish it was just tingling, but it's more. I can't feel like this for very much longer without some form of treatment that actually helps. Which is why I agreed to the treatment offered yesturday. At this point, I'd be encouraged if just the steroid helped some. But thanks again

 
Old 11-29-2011, 11:56 AM   #6
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Re: Is my Neurologist wrong?

I think I would definitely look at seeking the opinion of an MS specialist.
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Old 11-29-2011, 06:00 PM   #7
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Re: Is my Neurologist wrong?

Hi. I agree with the opinions above, get a second opinion with an MS specialist. I was first diagnosed in may 2011 by a regular neuro. Although most of his opinions were accurate, there were some that weren't -- and they were important issues. I got a second opinion from an ms specialist and it was a completely different experience. The ms specialist can confirm an ms diagnosis, and also can also confirm if it is not ms.
Good luck to you.

 
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Old 12-27-2011, 10:49 AM   #8
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Re: Is my Neurologist wrong?

Well, got a second opinion today. But first an update on the Lyrica. It made my "hangy ball" swell up and my legs twitched like crazy over night. Not much sleep, so, like Cymbalta, it's shelfed. I'm not taking something that makes symptoms worse.
Now, back to the second opnion. I saw an MS specialist from the same practice as my regular neuro. He said that I have symptoms that have to come from multiple parts of the brain or central nervous system. But none of them point to one diasease. The O-bands being high doesn't corrolate with other numbers like syn rate, igg, etc. That it's more likely to be an error than actual o-bands. But this guy would not say that I have Fibro, but gave no indication of what I could have. Just that I have symptoms without a cause. In his words "like when some people have high colesterol without any reason, they just treat the high cholesterol" So, I'm just crazy, and all this is make believe. WHATEVER!!
So I guess I'll just keep track of things as they change and wait till my whole leg doesn't work and go back to them and kick 'em with my good foot and see what they say then.

 
Old 12-27-2011, 09:15 PM   #9
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Re: Is my Neurologist wrong?

I think you need some fresh eyes and a new MS Specialist. Have they followed the Revised McDonald Criteria? If they did, they would reach a diagnosis from among the 400 possibilities.

I recommend you move to another MS specialist with new tests and fresh eyes.
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Old 01-07-2012, 05:38 AM   #10
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Re: Is my Neurologist wrong?

Look at possibly lyme disease. Before start treatment for anything

Last edited by sassygirlnh; 01-07-2012 at 05:44 AM.

 
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