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#1 | |||
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Senior Member
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Quote:
From many posts I've read over the last 12 or so years, Mayo is on the list of the good places to go for PN evaluation & testing, but...... it seems to be on the bottom of the list. Preferences for other centers seem to be higher and experiences at Mayo seem to be left wanting, in many posts. Cornell-Weill, Cleveland Clinic, Johns Hopkins, Jack miller Center to name a few, seem to get a higher experience and test rating than Mayo.
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Bob B |
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#2 | ||
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Member
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Cleveland Clinic seems to be a good place to go for folks like us. I researched their physicians and found one that is a neurologist and a specialist in neuromuscular disorders. He actually specializes in autoimmune/ inflammatory polyneuropathies so hopefully I am in good hands. My neuro at IU wouldn't even consider a skin biopsy, this doc at CC actually suggested it. The problem is that I am a "get er done" kind of person and waiting 6 weeks for appointments is driving me nuts!!
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"Thanks for this!" says: | DejaVu (07-09-2010) |
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#3 | |||
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One of the neurologists I saw dissuaded me from getting this because he said it wouldn't tell us what the cause is and wouldn't affect my treatment. It made sense to me at the time. I'm confused now...what is the point to doing it?
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PPMS Rx 2013, symptoms since 2000 |
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"Thanks for this!" says: | DejaVu (07-09-2010) |
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#4 | |||
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Magnate
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From reading posts, I am NOT that impressed with Mayo. I do know of one center not far from Mayo from those in the Midwest, Great Lakes area that does do skin biopsy and also has an autonomic center. I have gotten care there for 6 years and am pretty satisfied. If any one needs a center in the western Great Lakes area, you can PM me.
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Some days are not so good . . Others not so bad: . |
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"Thanks for this!" says: | DejaVu (07-09-2010) |
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#5 | |||
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Senior Member
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The point of doing it for many people seems to be for confirmation that they have small fiber neuropathy. Many people with small fiber neuropathy have been told by doctors along the way that it is all in their head or from stress. Also people may need the confirmation of the small fiber neuropathy for use in disability cases, ssdi or ltd. You can also keep track over time with additional biopsies as to the direction you are going. getting better or getting worse or staying the same. It would seem to be useful for peace of mind as to finally know what is going on with yourself.
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"Thanks for this!" says: |
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#6 | |||
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Senior Member
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EEG's & MRI's will only show large fiber disturbances in the tissues.
If these are 'normal' and show no problems, the gold standard for small fiber damage confirmation is the skin punch biopsy. I have one done every 3-4 years to check on the level of damage. I've been able to keep it in check without significant additional damage for the last 6-8 years. My neuro first diagnosed me by saying: I've good news & bad news....... the good is that you are continuing to grow new small fibers. The bad is that your neuropathy/fiber destruction is faster than the new growth. If we can halt progression, the new may just catch up, someday. Knowing what type of neuropathy (mine is sensory, length dependent, axonal, small fiber, polyneuropathy) does affect the type of treatment, to some extent.
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Bob B |
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#7 | ||
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My diagnosis is pretty much the same as yours, Bob, except I have not heard "length dependent" but I have heard "demyelinating." What type of treatments have been tried for you? I am hoping that there is something that will come from my next visit at CC as I am not ready to throw in the towel on my career. I spent too many years in college to give up on something I am so passionate about :-(
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"Thanks for this!" says: | malawigirl08 (07-06-2010) |
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