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Old 02-27-2014, 06:40 PM #1
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Post SFN & vascular injury?

Hello everyone. I returned to Mass General Hospital yesterday to see a rheumatologist after my neurologist got lab results on my skin biopsy back from Cornell. I just found out that the report from Cornell shows evidence of vascular injury within my skin cells. I am now awaiting blood test results to show whether I have an autoimmune disease. I have been living with increasing eye and mouth dryness along with other symptoms that point towards Sjogren's, so I wouldn't be surprised if this comes back as positive. My big question is: are there other people out there who have had these reports of vascular neuropathy? If so, what were those findings? What treatments were prescribed, and did they help? What is the prognosis for this type of neuropathy?
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Old 02-27-2014, 10:25 PM #2
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Hello Mamadepski
I might have some similar conditions to the ones you have.

First, I would like to ask: Why were you seeing a neurologist? Did you get diagnosed with neuropathy?

Some times autoimmune disorder can show up in many different ways, and one can have one disease and also another autoimmune disorder at the same time.
Peripheral neuropathy can sometimes be caused by an autoimmune disease. And yes, Sjoegren especially, can cause quite severe neuropathy, especially Small Fiber Neuropathy.
Did you have a lip biopsy for Sjoegrens?

Be aware of that sometimes the blood tests can come back with false negative. You might have symptoms, and the test negative. But tests will be repeated. I have heared that 6 out of 10 Sjoegren's blood test are false negative. (and they are not very reliable, I have heard from a doctor specialising in this.)

Sometimes it can take a very long time to diagnose autoimmune disorders.

Here are some good articles:
Vasculitis: http://www.vasculitis.ca/vasculitiss...-symptoms-html
Sjoegren;s : www.sjoegrensworld.org/mandel.htm
Peripheral Neuropathy: http://www.ninds.nih.gov/disorders/p...ropathy/detail peripheral neuropathy.htm

This is my story:
Diagnosed 2 years ago with Leukocytoclastic Vasculitis. I had a purpura rash on my leg at first, and then a biopsy was done there. ( *** And I think, by the sound of your description of your skin biopsy, that this is what they found in your biopsy. It could be.)
This can be an autoimmune condition.
Then I started with joint pain. Then I developed Levido Reticularis on my skin. ( a purplish like network looking vascular formation on skin especially with cold temperature.)
I have so far tested negative for Sjoegrens
Then I started developing terrible neuropathy gradually.
I was diagnosed with Sensory Motor Poly Neuropathy and Small Fiber Neuropathy.
The Neurologist and the Rheumatologist still do not know the exact under lying reason for the neuropathy, and I continue to have periodic tests for different autoimmune diseases.
I am being treated with Methatrexate ( immunosupressant med) for inflamatory arthritis and history of Leukocytoclastic Vasculitis.
I take medisine for the neuropathy, Lyrica and Amitripthyline.

I am telling about this, because my rheumatologist says there is a possibility the neuropathy can be caused by vasculitis.

Vasculitis can develope from small vessels to medium and large vessels. And there are some vasculitis diorders that causes neuropathy.
It sounds like you also will have some testings. Did you have a rash for the skin biopsy?
I wish you good luck
I hope you can have the necesarry tests, and get a diagnosis. But most of all, I hope you do not have any of theese conditions.

Last edited by Synnove; 02-27-2014 at 10:48 PM. Reason: extra info
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Old 02-28-2014, 07:31 AM #3
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Default Neuropathy can definitely be--

--a secondary outcome of many of the autoimmune vasculitic and connective tissue disorders that are associated with variations of the anti-nuclear-antibody (ANA).

See:

http://neuromuscular.wustl.edu/antib...tml#vasculitis
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Old 02-28-2014, 02:10 PM #4
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Quote:
Originally Posted by Synnove View Post
Hello Mamadepski
I might have some similar conditions to the ones you have.

First, I would like to ask: Why were you seeing a neurologist? Did you get diagnosed with neuropathy?

Some times autoimmune disorder can show up in many different ways, and one can have one disease and also another autoimmune disorder at the same time.
Peripheral neuropathy can sometimes be caused by an autoimmune disease. And yes, Sjoegren especially, can cause quite severe neuropathy, especially Small Fiber Neuropathy.
Did you have a lip biopsy for Sjoegrens?


Synnove,

Thank you so much for this information. I have been seeing a neurologist because of SFN symptoms. My skin biopsies over the past three years have shown significant advancement in my Small Fiber Polyneuropathy. My neurologist decided to send some of my biopsies to Cornell to get a finding on whether or not there were indications of autoimmune disease.

I have been diagnosed with Fibromyalgia, Lyme, CRPS, Degenerative Disk Disease and have been going into, unfortunately, a downward spiral, health wise, in the past couple of months. I have been sick with an upper respiratory infection which has left me weaker & absolutely exhausted. I can't work.
I have had one incidence of a rash - I had no idea what it was, and it disappeared after a few days. It looks like the pupura rash in the picture linked to the vasculitis article. It makes sense. I just want to have answers and don't want to wait, even though I know that I must...

I haven't had a lip biopsy for Sjogren's yet - I have to see an Opthamologist to check my eyes - I was also told that I should have a sleep study done. I used to have sleep apnea before I had Gastric Bypass surgery - since then I haven't needed a CPAP machine, but I rarely sleep through the night.
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Old 03-01-2014, 07:09 AM #5
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Default Having had gastric bypass surgery--

--would certainly increase the chances of malabsorption syndromes that could lead to neurological syndromes as well, particularly involving the B-vitamins.

In your work-ups, have you had vitamin/mineral testing?

Something else to peruse--the Liza Jane spreadsheets, designed to be as comprehensive a list of potential tests for neurological symptoms many enlightened minds could come up with:

www.lizajane.org
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"Thanks for this!" says:
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Old 03-01-2014, 11:52 AM #6
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Originally Posted by glenntaj View Post
--would certainly increase the chances of malabsorption syndromes that could lead to neurological syndromes as well, particularly involving the B-vitamins.

In your work-ups, have you had vitamin/mineral testing?

Something else to peruse--the Liza Jane spreadsheets, designed to be as comprehensive a list of potential tests for neurological symptoms many enlightened minds could come up with:
Yes, I have been quite aware of the impact of gastric bypass on my vitamin levels - these have remained stable due to my taking the proper supplements. Initially, my neurologist suspected the cause of my SFN might be glucose intolerance. I was pre-diabetic before my surgery. Following the Gastric Bypass, all of my issues with this resolved. Unfortunately, my neuropathy has continued to worsen despite my improved nutritional health and increased exercise. Now we are working to find out what else may be causing my neuropathy.

To be honest, I am beginning to feel a little scared with this most recent set of results that are saying that I have all indicators of vascular injury/vasculitis because I don't know much about it.
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