pins and needles and shooting pain

[Mblayneh]

Has anyone experienced pins and needles sensation through out your body and shooting pains without diagnosis of neuro- Behcets . I have had mri and cat scan with no lesions. A specialist in New York recommended a spinal tap.

[lovenothate]

Hi Mblayneh Yes I have a lot of neurological symptoms and yet haven’t had an official diagnosis of Neuro Behçets. Shooting pains and various neurological pain (burning, stabbing, painful pins and needles etc etc) along with neuropathy, particularly in my legs but also present in my arms. I’d also be interested to hear from anyone else who has Neuro symptoms but without a typical presentation of Neuro Behçets (MRI, Spinal Tap etc) All the best, Will

[Matillymoo]

Hello Mblayneh and lovenothate, I have also experienced a lot of neuro symptoms, on and off for about 10 years. Started as shooting pains in hands and feet, then had a 3 week episode of stinging pains, numbness, tingling, shakiness. I was dx with Raynauds in my 20s, and finally Behcets this year (after 30 years of symptoms!) All my brain MRIs have been inconclusive, so i don't have a neuro behcets dx. But i believe that is likely what is going on, especially with my new symptoms the past few years of being woken up with electric shock feelings, stinging, burning, etc. Mostly neck, but also hands and feet. I also have crazy bad tinnitus. Sometimes the past few years i wake up really like clenched and drenched in sweat, and feel like my muscles kind of keep spasming all day. I don't know if that happens to anyone else with Behçet's, seems like anything is possible with this disease. I am getting sick of telling my doctors things, but i was thinking maybe i should do a sleep study/ EEG. x

[Mblayneh in reply to Matillymoo]

After seeing Dr. golden across the country because NYU is more versed in the disease he is recommending to my drs here to get more testing like an EEG as well as a spinal tap. Might be worth it for you to do both.

[Matillymoo in reply to Mblayneh]

Thanks for the reply Mblayneh. Keep us posted about the tests and i hope they go well for you. I think an EEG is a good idea too. From what i've read its best to do within 16 hours of a seizure. So next time it happens i will be making a trip to the ED - i might just show them this thread, because usually after it happens i have a lot of trouble talking!

[muttiof3 in reply to Matillymoo]

I told a neurologist once of my symptoms and he said, “Oh, that’s not Behcets.” Well, put simply, Behcets is inflammation of the small blood vessels and I’ve decided anywhere I have small blood vessels I can have weird symptoms. So I asked him, “How many Behcets patients do you have?” He said, “None.” And I said, “Well,…..how do you know?”

I agree, anything is possible with this disease, especially if small blood vessels are involved. Over the last 20 years it has proven to be true.

To answer you question, I have all sorts of neurological symptoms, all painful and all pretty much intermittent except for the shooting pains in arms and legs. The specialist I saw said that while I don’t have neuro-Behcets, I have neuro-Behcets symptoms. I was relieved and will be grateful until I’m told otherwise or my body gives me reason to go back and ask again🤓