Peripheral Neuropathy: I’ve had Behcets for over... - Behçet's UK

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Peripheral Neuropathy

Meggy7791 profile image

I’ve had Behcets for over 50 years. Taken numerous different medications and am on Imraldi at present. This works brilliantly for me re ulceration. I’ve never been diagnosed with Neuro Behcets although I do have neuropathic bladder, bowel motility problem and oesophageal spasm which does suggest some nerve damage. Over the past year or two I have noticed numbness in my right foot arch but have had surgery so put it down to some nerve damage caused by that. Now in the past 6 months I have the same problem with my left foot. I have had nerve conduction tests and they were able to compare with those taken in 2012. Then I was on Thalidomide. Peripheral neuropathy is a common side effect of Thalidomide and there was a little damage but not that I could feel. I stopped taking Thalidomide then. Today they can see there is more peripheral neuropathy present.

Does anyone with Behcets have this problem?

7 Replies

Sort of similar boat. Also not officially dx with neuro, but get the meningitis. I recently had the issues with neuropathy, and it turns out that I had pernicious anemia (30f at the time).

Highly recommend getting your b vitamins checked, and ruling out PA (blood tests are intrinsic factor and parietal cell antibodies). Any b12 under 500 needs supplementation.

I also had to start supplementing with a high dose b6 (100mg) and my residual muscle spasms went away (just thought I had permanent nerve damage from the b12). Just keep in mind if you have issues with absorbing one b, you’re likely to have issues with another.

Hope this helps rule something out.

Meggy7791 profile image
Meggy7791 in reply to rooser1

Thanks rooster . I have had vit b test and I believe them to be within the normal range.

rooser1 profile image
rooser1 in reply to Meggy7791

double check the values,. they said i was normal and it was low end at 349.

double check all your values always. borderline ones often gets dismissed.

Yes I have it in my hands and feet

Hiya, I was on Thalidomide for 20 years and over that 20 years I've had significant nerve damage caused. They did do regular nerve studies and were able to see it declining over the years, but because it was keeping my Behcets symptoms at bay I refused to come off of it, but 2 years ago I woke up one day and struggled to walk, so after a stay in hospital for a bit I was taken off of thalidomide and ended up really ill as my body shut down, due to being on the drug for so long. I was quickly put on to Remsima infusions which have been doing good at also keeping my symptoms at bay, but my nerve damage has remained bad and now I have mobility issues due to loss of strength and mobility below the knees, I'm just waiting for a nerve study soon to see how things are, as I've been struggling a bit lately. But I do believe Behcets can play a part in nerve issues too and not just the Thalidomide, just ask for regular check ups to see if the damage declines any more than it already is.

Thank you all for your responses. I imagine that I’ll never know whether or not it was the thalidomide or Behcets itself that has now caused the nerve damage decline. I will definitely find out my exact levels of b12 and b6.

I had oesophageal spasm & it was caused by food getting caught in a ring of scar tissue caused by reflux from small hiatus hernia. Had to get dilatation procedure which was done with endoscopy with balloon attached. I asked if it was a nerve problem. Gastroenterologist said no it’s a muscle problem.

My Dad though, did have a peripheral neuropathy of some kind, never found a name for it. So always wondering what he had!

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