Behçets and trigeminal Neuralgia

[Papapickle]

Hi all,

I have suffered with behcets for several years now and recently been diagnosed as having trigemin all neuralgia, ms hug too.

Just wondered if anyone else has suffered the same?

I feel quite useless sometimes and unfortunately suffered a horrid depresseion after my last steroid infusion.

Would be great to hear from you 🙂

[swanseakev]

Hi Papa,

I was diagnosed as having Trigeminal Neuralgia about 12 years ago following an MRI scan and Nuero tests

After suffering absolutely debilitating headaches which had seen me hospitalised on a couple of occassions , i was put on Gabapentin and Nortriptyline to try and ease the symptoms

I am now being referred back to Neurologists as my Rhuemy thinks its more likely down to Behcets involvement and wants them to check this possibility out

Im still suffering excruciating headaches and more recently losing the feeling in left hand and forearm

Can really relate to you on how these headaches affect you , and your mental health.....on many times I've wished to not wake up in the morning....still here though🙄🙄 battling on ..the other pain/symptoms now help take my mind off it

Stay strong and hope you find some relief

Kev

[jzeis]

Hi Papapickle,

You're not alone! So sorry you're going through this. I've never had trigeminal neuralgia myself, but there have been some published reports of BDers who've had it -- here are a few of them. They're pretty hard to read (a lot of medical language), but the second article talks about using infliximab to treat it:

Trigeminal neuralgia as a relapse in Behcet's disease (2016)

clinmedjournals.org/article...

Atypical presentation of Behcet's disease with CNS involvement successfully treated with infliximab (2012)

ncbi.nlm.nih.gov/pubmed/214...

Behcet's syndrome: A report of 41 patients with emphasis on neurological manifestations (1998)

ncbi.nlm.nih.gov/pmc/articl...

I hope your doctors can get you feeling better soon.

Joanne Z.

[Brichel]

I developed the same problem. Sometimes the pain is awful but a lot of the time it is just a tingling, numbing feeling that can drive me nuts. It flares up when I am stressed and when the humidity gets bad.

So I have both vascular and Neuro Bechet's. So lucky😕

[Ang4upmich]

Hi. This is my first time writing but I also have behcet's. I have been getting the ms hug also.

From long term prednisone use, my bones are brittle. I swell internally my flares are cyclic and almost every month a rib or two break. Never know.

Last month i just learned about that ms hug and its exactly what I experience. It went around my waist.

I am taking Imuran and colchacine and obviously its not working because I am just entering my flare...

I dont know how much more i can take. I get maybe a week brake where i feel my normal self and then bam! Its hard to stay in acceptance. I try and see all people things in Life im grateful for. To find the joy in anything.

This is an awful dis ease.

I wish it on no one and no one understands because i "look" normal..well to them.

Not to say the 65 pnds I've gained from meds

Just feeling down , i thought this medicine was going to stop my flares and it is not working.

Stay strong.

Maybe we can all figure this out together!

Dr.s dont seem to fully get it do they? Same with People