AnonymousDecember 27, 2010 at 7:37 am
My husband, Mike has peripheral neuropathy from head to toe. He recently had a skin biopsy and it showed inflamed axons. Could anyone advise please? He’s going to have a PET scan this week to see if anything shows up that may be causing this and to see if there are any changes from MRIs done in the past. Thanks!
AnonymousDecember 29, 2010 at 3:22 pm
The National Institutes of Health has this to say:
“Skin biopsy is a test in which doctors remove a thin skin sample and examine nerve fiber endings. This test offers some unique advantages over NCV tests and nerve biopsy. Unlike NCV, it can reveal damage present in smaller fibers; in contrast to conventional nerve biopsy, skin biopsy is less invasive, has fewer side effects, and is easier to perform.”
For more see [B][U]Treatments[/U][/B] at: [url]http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm[/url]
Peripheral Neuropathy also has it’s own Support website The Neuropathy Association.
Good luck and Happy Holidays.
AnonymousDecember 30, 2010 at 6:24 pm
.. to remember? I can say that they are not invasive [but for the contrast-which is not that used by MRI’s] and they often find, if not THE issues causing problems – those that result from current or past problems which mite be causing your current problems!
In my case, I’d gotten PET scans due to cancer. But, scans found out soo much more about ‘me’ that would have taken heaps of time and lots of invasive biopsies and extra scans to find! Get a copy- it’s an eye opening window into YOU or in this case, your husband!
Be sure to ask for and GET a copy of that report from the get go! Why? Because the docs will call you and ‘tell’ you ‘this and that’ about the report, with you having no clue what they are talking about!
The summaries are short, sweet, and mostly extraordinarily concise. No words will be minced or obscured-just facts. And facts are what you need right now. The scan won’t answer all issues facing your husband and you, BUT? It will help you know essentially: ‘What’s off the “list” to worry about’ and what to now look into further.
Cindy? I’m glad your doc did the skin biopsy test! I’ve refused flat out the ‘full seural nerve biopsy’ because I felt it wasn’t needed, I just had a neuro who wanted to ‘do’ one. And the seural’s are nasty. Skin tests are super and one thing in the last 3-4 years have been becoming norm and I think they are far more valuable to US as patients!
Good luck with the Pet results! I’ll try and cross my fingers for you!
Hugs and hope! AND…do let us all know what has been happening! We’ve been in similar [tho not identical] situations. That walking on and chewing nails stuff is NOT fun!
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AnonymousJune 12, 2008 at 11:40 pm
[QUOTE=angel2ndclass22699]I’m just wondering how many people have had a skin biopsy performed on them since having the cidp dx.
I will be having one done in a few weeks, along with my 12th ncv/emg and a mri of the brain(they won’t find anything up there-so I’m told;) ).[/QUOTE]
I’m curious about the rationale for the skin biopsy. I just googled and saw that for CIDP some doctors are doing a skin biopsy versus a nerve biopsy to help diagnose CIDP. Is that what is happening with you?
AnonymousJune 13, 2008 at 12:13 pm
I’m still trying to get a confirmed dx. Thanks to Jerimy(The Man!;) ) I’m being seen by a Wonderful Neuro who is Very Good!! He is trying to rule things out and trying to see just what we are dealing with as far as nerve fibers go. I have many sensory deficits and motor deficits are there also. The skin biopsy will show if there is small fiber involvment for sure and to what extent. Since some of my symptoms don’t fit in with just a small fiber neuropathy dx, we are trying to find a starting point to a dx.
AnonymousJune 16, 2008 at 12:05 pm
because you will have a good bit of nerve removed to determine what YOU already know…that nerves are dead.
IF nerve conduction tests, blood work AND spinal fluid are all positive for a likely CIDP diagnosis…Then maybe hold off? I know I did, because all my tests were clear for the CIDP. In cases where it’s not clear it’s a whole different kettle of fish.
These days some insurance companies won’t cover sural biopsies because they are a-too invasive and prone to infections and b-if not properly done, handled and processed could be a wasted effort.
The skin biopsies are for small-fibre nerve damages only and are less invasive but in many medical and insurance circles are still considered ‘experimental’.
Should all your nerve tests, etc not be clearly indicative of CIDP… then, and only then consider a sural…nerve biopsy. AND only with your insurance company’s blessings and clearances.
The blood and spinal tests serve to show that there is an ‘autoimmune response’ going on. The nerve conduction tests show that there is a malfunction of nerve current going from points A & B to points Y and Z…
If you get a sural biopsy? Those nerves are GONE and unlike other damaged nerves, can’t regrow and work around existing damages.
I refused a sural biopsy for three reasons: First- the neuro who wanted to do it was too blithe and eager to do so…and since I’ve learned that it is a procedure falling out of common practice [he wanted to get ‘one’ on his resume?]; Second – all other tests said it wasn’t necessary and Last – I wanted that one shred of hope that I might regain function…I have to some limited degrees and don’t regret that I’ve not had it done. Should I need to go thru the procedure in the future I might consider it if only to continue IVIG. But for no other reasons.
I hope this helps and doesn’t confuse the issues for you. Hope and hugs!
AnonymousJuly 8, 2008 at 12:07 pm
After two years of steady decline without help from the normal protocol of treatments to do for CIDP, my Neuro wanted to see how bad the damage is.
I had had a Sural Biopsy near the time when they finally diagnosed CIDP.
But then they wanted to see to what extent it had progressed.
They did the skin biopsy, of which the results show small nerve atrophy as well, which explained why I was having problems with my autonomic system. With small nerve atrophy, CIDP attacks the nerves controlling the different organs. It attacked the nerves controlling my: heart, (it gave me tachycardia); bladder, (I am now on a permanent catheter); my phrenal nerve, (it hit the diaphragm and I can only breathe in shallow breaths); my stomach, (the food comes into the stomach and the stomach doesn’t work, so I must take pills to make the stomach digest the food); swallowing, (they did a swallow test on me since I was having trouble swallowing, and saw where the food was bouncing back into the windpipe area); bowels, (I only “go” once a week now, and have to use a lax if I can’t); and waiting to see what NEXT will happen. My team of doctors gave me a bleak prognosis, and said I would probably “go” when I would get the flu or some type of lung infection, that my body is too weak to handle, especially since the diaphragm doesn’t work right. I am currently on Chemotherapy now, as a last ditch effort for them to try to put it into remission.
But, yes, it helped them to see how far the CIDP had progressed. It is a good tool for the doctors, if the current protocol of treatments, (i.e. IVIG, steroids, plasmaphereses, etc.) doesn’t seem to be working.
I hope this helps.
AnonymousJuly 8, 2008 at 4:05 pm
Personally, I’d go with the other testing first & see what they found out. Then if the dr isn’t quite satisfied with a diagnosis I would go along with the biopsy as a last resort.
It’s great that you have a good dr that wants to get to the bottom of your issues. Let us know what he/she says.
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