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Old 02-18-2010, 07:39 AM #1
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Default anyone question their diagnosis??

I was just dx on Jan 20th with definite RRMS.

I do question my dx and will be getting a second opinion in March. My doctor is good and I like him...he is a general neurologist so i will be seeing a MS specialist at a comprehensive MS clinic in March.

I have a great deal of the symptoms associated with MS.

my history:

~psoriasis/eczema ~neck/shld/back pain/stiffness ~creaking fluid noise with neck mvmt ~electric shocks with neck mvmt ~migraines ~pressure headaches ~seep clear liquid from ears ~ring/buzzing/fullness/echo in ears ~arm tingling, numbness and weakness ~over or undershooting arm mvmts ~dropping things ~cold feet and hands ~hoarse rough voice ~no voice when yelling ~hip pain ~crampy/achy/tingling legs ~decreased balance/dizziness ~catch toe on floor ~mix-up words ~poor memory ~blank stare (zone-out) ~frequency/leaking urine ~constipation ~sleep difficulty ~enlarged lymph nodes ~losing hair ~fatigue/depression ~heart palpations/fluttering ~visual (floater, blurry, nystagmus, twitches, soreness, double vision, color, etc)
On and off for last 10-15 years


.....but also have other medical issues that could account for some of them.

......I do have two herniated dics, scoliosis, cervical radiculpathy, have 5 children, have a history of severe migraines, which can cause similar white matter lesions

recent tests: as of jan2010

abnormal SSEP
Optic Neuritis
MRI with a few sucortical white matter lesions
normal spinal tap
low B12 (not extremely low 308) which can mimic MS symptoms, including extreme fatigue.

Do you see what I mean.....I am in the medical field and I know that makes me a very bad patient and I question everything....because after all it is
Practicing Medicine

Maybe it is just denial....I haven't told me mom or siblings....want to wait for the second opinion, so maybe I won't have to tell them at all.

Thanks for listening,
Sharon
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Old 02-18-2010, 08:14 AM #2
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I should have added my neuro exam:
-hyperactive deep tendon reflexes -positive hoffman's sign -positive babinski-bilateral clonus -absent abdominal reflex -mild ataxia -decreased spinal mvmt -increased paraspinal spasms.
......all of which are abnormal
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Old 02-18-2010, 08:27 AM #3
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All the time! I frequently sit in that chair and say " are you SURE I have MS?!"

Best bet is to go to the MS center. they are pro's at ruling out, or ruling in what are the key factors. There are more than 100 diseases that can mimic MS, and there is no real difinitive test that has a blinking light saying "yep, its MS" once they rule out everything else, they are left with a handful of choices, and they pick the most likely.

Going to an MS center is always a good thing. it will let whole picture be seen.

Diagnosing MS is almost never done in a hurry, its a process.

Welcome to the club house. Pull up a chair and share your story.
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Old 02-18-2010, 10:10 AM #4
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My first DX came from a general Neurologist. He did Evoked Potentials,
MRI, numerous blood tests ruling out other stuff, a Lumbar puncture all saying suspected MS. The man had no bedside manner at all though he was a good doctor. I next saw a MS specialist in a MS center and due to their moves, am on my 5th neurologist, my MS never questioned, but MS can be tough to diagnose. Many get a second opinion. Sometimes years can go by before someone questions DX. It happens.
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Old 02-18-2010, 10:46 AM #5
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I think that many do question their dx of MS. While I never have (was dx within 2 weeks -- MRI's and LP), my neuro has repeated a few times over the past few years that I do have MS. This was also confirmed by MS specialist at Barnes Hospital.
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Old 02-18-2010, 10:55 AM #6
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Every morning! LOL j/k During the dx process I knew I was in good hands and trusted my PCP and neurologist. Although occasionally I question everything, I know that all possibilities have been exhausted. I went through quite a bit of testing for a few years trying to figure out what was going on and ultimately had the big event (major flare) that gave me the dx.

Additionally, I was in a study and the dr is a well known MS specialist in the U.S. as well as internationally. So I know if he saw something that was not consistent with MS, my dx would have changed.

While the process of dx can sometimes be long, most good neurologists don't hand that dx out lightly. Good luck with your appt. in March. Hang in there and know we are all here to support you through this.
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Old 02-18-2010, 11:19 AM #7
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Well, after over 40 yrs with this carpola, I don't question, because I don't care. It's either MS or some other carpy cantankerous disease, just like MS and is not going away.

I'm glad your Doc is open to LDN. It's a good place to start, especially since you are not sure.
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Old 02-18-2010, 12:23 PM #8
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Default radiologist report?

Sharon

What did the radiologist say on the MRI summary report. This is very critical. I assume you have a copy.

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Old 02-18-2010, 04:04 PM #9
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Quote:
Originally Posted by jackD View Post
Sharon

What did the radiologist say on the MRI summary report. This is very critical. I assume you have a copy.

jackD
the radiololgist report said: a few subcortical white matter lesions T2 hyperintensities non-specfic

then, I took the MRI disc to my neurologist (he does have his own MRI facility, and reads the ones specfic to his field....I however, live in a different town, so I went to the MRI here)

the neurologist read the MRI and stated approximately 10 white matter lesions on flair consistent with MS.

See why I am not sure at this point.....who would you believe?

thanks,
sharon

Last edited by daisy.girl; 02-18-2010 at 08:16 PM.
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Old 02-18-2010, 04:18 PM #10
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Sharon - I am so sorry you are going through all of this. You have quite a bit going on which makes things more difficult. Sorting out which symptom belongs where is hard.

Did they ever test your thyroid or for any metabolic disorders? Quite a number of you symptoms could be attributed to a thyroid disease. On the other hand, some of them are not.

The placement of the lesions is important as MS plaques tend to like certain areas. I am sure they will go over that at the MS clinic. There is a "sticky" on here that lists lesion locations that might be somewhat helpful to you.

EDIT: Just checked for that sticky and it is no longer there.

Wishing you the best of luck!
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