Central nervous system symotoms

[fortunate]

Hi there

I wondered if anyone else has symptoms to mine and whether you think they may be caused by Behcet's. Had attacks of tingling in head and legs, panic like attacks that come on suddenly with steep,rise in blood pressure. Behcet's consultant thought I had a rare tumour of adrenal gland and was referred to an Endocrinologist. Still waiting on the results of a blood test after five weeks to confirm or rule out this diagnosis but consultant thought it now unlikely and thinks that a tricyclic anti depressant I had been on for a long time for bladder problems could be the culprit and I have come off them but had some terrible withdrawal symptoms. I have just had a really bad flare of Behcet's and have a return of symptoms but feel,very weak and still have anxiety and tingling and weakness in head and legs and light headedness. I just feel very ill and don't have any energy or appetite I am still not convinced that my symptoms are unrelated to Behcet's as we all,know too well how this disease morphs and changes during its course. I have made an appointment to,see a private neurologist as getting seen by consultants is getting very difficult in Scotland. It took,12 weeks to see an endo and months for all the test results to come back. I would very much appreciate your opinions as I becoming more and more worried and anxious about all of this and the difficulties of accessing the medical support we need. 😒

[billi]

Hi your symptoms sound all too familiar to me. Over the many years of this disease I have been told...no that isn't a symptom of Behcets......no it's nothing......its just your age and more. Then a few years back this site came into being and I now know my symptoms were certainly Bechets, in fact my before his retirement my consultant admitted that a problem I had with my scalp was very probably Behcets. So there is hope that knowledge is growing and more research etc etc.

I can also confirm that some of the meds I have taken have caused me problems in other ways and I have suffered terrible withdrawal symptoms. I do hope you find the answers you are looking for and the right meds for you.

Billi

ps. Depression in itself is also a symptom of BD.

[fortunate in reply to billi]

Hi Billi

I really appreciate you getting back to me. It is comforting to hear from someone who understands this horrible disease. I think that you are right in thinking that Drs and consultants don't often see the full picture and because symptoms are not text book they tend to dismiss them. I feel that we sometimes have to be proactive and go elsewhere for second opinions and I will need to start paying for scans and things myself but I am grateful that I am able to do this but I know others can't. I wish you good health and will let you know how things progress.

Catherine

[Janieg510 in reply to billi]

What trouble did you have with your scalp? Mine itches constantly and nothing I have tried helps. I don't have lice and my hairdresser says just a light case of dryness, but I'm wondering if the itching is related to Behcet's, too.

[billi]

Hi, started about 8 years ago with itching but nothing visible. Then I could feel lumps bu docs still said my shampoo, hair products, etc etc. It would come and go and docs then said stress after I had done all they asked and tried many creams, lotions etc. still it got,worse and would form sores which would change to scabs as I scratched.

Finally 3 years ago I had an appointment with my specialist so I got hubby to take photos for me to take. Luckily I had crop and he looked and said he had seen other patients with same and he thought it very probably was at least Behcets related.

I still get it on and off but I don't take any meds as I am on quite a few and I just couldn't cope wiTh more.

Hope this helps and do take photos as and when to show at appointments.

Hugs

Billi

[Legomum]

If there is a "lock" on the post, you may receive more replies??? Otherwise I think everyone can view the posts and replies if they google I think!?

[Norahm]

I have neuro symptoms. These symptoms vary. I have really bad headache, feels like someone with baby sized hands is scrunching the sides of my brain, also feels like electric shocks or someone tugging my hair very hard and fast. I am unable to move without extreme pain when having these neuro attacks and also get the personality changes which can be at extreme ends of spectrum.

But my Mri previously was clear, but my lumbar puncture showed high amount of proteins, which is an indicator of neuro behcets.

My specialist has been leaning towards base brain/basal ganglia/brain stem involvement for many years.

Good luck with the private neurologist and hope you get some answers x

[Legomum]

Could you add a lock to your post?