Stroke and behcet: Hello all I am in still... - Behçet's UK

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Stroke and behcet

Akbalik
Akbalik

Hello all

I am in still process of diagnosing Behçet,

I had a stroke last year ( 33years old)

Thanks God, it didn’t leave any damage but I feel a lot of dizziness and inbalance, neurologically I feel bad, very tired all the time, and recently I feel that tingling in my body, shoulder, arm and legs and tongue tremor,

Doesn anybody has any symptoms like me ? If yes what medicine should I use ?

At this point, I am using colchicine and methotrexate 2.5 mg,

11 Replies
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How scary for you - I am glad that you appear to have escaped relatively unscathed. I had a retinal vein occlusion, the cause of which is similar to that of a stroke, but only involves the eye. I take Azathioprine - it goes under different names I think but it has worked for me. It would be worth asking the question. You say you are still in the process of diagnosis so you must be showing other sign/symptoms for Behcets to be mentioned. There was the mention of Behcets for a number of years with me, until eye involvement and then it was pretty certain, although there is no test as such, just symptomatic diagnosis. Because of the seriousness of a stroke, I would be assertive regarding getting a Behcets diagnosis. Good luck and please post how you get on.

Akbalik
Akbalik in reply to sam0511

Thank you, there is no skin involved, no lesions, rash or genital ulcers, have very minor mount ulcer, but my rhamotologist did repeat tests, and sediment rate and cpr was little high, and I am complaining about joint paints and tiredness.

My stroke was a year ago, my neurologist could not figure out the reason, I was very healthy all the time, and all of my symptoms (behcet) started 6 months ago, so I didn’t have any symptoms when I had the stroke, but my rhamatologist relates it to behcet.

Ashveer
Ashveer in reply to sam0511

Hi Sam, our son has Branch Retinal Vein Occlusion, left eye only, and azaith. is 150 MG. a day with maintenance dose of Predinsone 5 MG for several years, as Behcets 2nd eye involvement still looms in danger, rule of B.D. is bilateral, and I pray to God that your other eye will be good, please have regular check up with Unveaitis Specialists even you don't have any symptoms, as RVO is behind posterior segement, most serious complication of Bechets disease...Sam5011 did you have any Avastin injections? our son did, his vision is 20/20 but his retina now permanently damaged with blind purple spot in top portion of eye, only if the occlusion was at the bottom of eye, that would be ok as we do not use the lower portion of eye, ...but God, has to challenge us, Montlhy blood tests so far have zero inflammation, occasionaly 1 (1-7 scale), but worrysome his white cell are now steadily decreasing from 5, 4, 3, and this month a fraction of 3 less, and 1 point down 127 MG Hemoglobin to 126 this month...this is worrysome, as he has to be on azaith. for at least 5-10 years (hopefully no Neurological attack, further disabling him speech, motor arm, eye)...I wonder sam0511 if you have looked into any stemcell trials for some damge to eye in our situation, innovations might work inte RVO as the damage is partial, but still there is optic nerve atrophy some of it in our case....retina is part of CNS, and this is very serious manifestation ...same, doctors careless about his further referrals, the doctors should have central referral of such suspiciious cases of B.D. with Turkish Hospital, as they can diagnose very quickly, from their expert disease experience of high prevalance there...they need to establish this medical unit iwth Turkey Cerraphasa Hospital for diagnosis, and patients can pay partial coverage to save lives....

we are going to Turkey soon in few months...this is our aim to meet with Dr. Gulsen Akamr-Demir, noted NBD Specialist along with Dr. Hasan Yazcici...

sam0511
sam0511 in reply to Ashveer

How very worrying for you all. As I understand Behcets is more severe in males than females. When I first had the RVO I was treated with injections directly into the eye - not as bad as it sounds actually. Then I was on a heavy dose of steroids to calm the inflammation. This was reduced as the Aza was introduced to 150mg daily. By coincidence I see my consultant tomorrow. I have check ups every 3 months now and I expect the conclusion to be the same - all is quiet - as I have had no change. I cannot fault my care from my GP through to the hospital. I consider myself very lucky in that respect. It took years for me to finally get a diagnosis, I had been rushed to emergency twice with suspected meningitis. The Azathioprine is working for me - blood tests show that it isn't causing any concern, however I was warned that it may stop being effective in the future, but was reassured that other treatments were available. My flares are hormone linked, so I am hoping that once I get past the menopause I may see things all but disappear, but there is no proof that this may be the case. My RVO was at the top of the eye , and so vision in that eye is like looking underwater. Procedures have been mentioned that may improve the sight - but as this can leave you with constant pain it was thought best left alone. I mostly forget it now, after 2 years. Your brain adjusts. i have had no migraines since starting Azathioprine - I understand that the CNS is effected, and it is with this in mind I am very careful to ask lots of questions. I hope you find answers and solutions for your son. As I understand Behcets is known as the silk route disease - running from Turkey, across central Europe, central England and into Ireland. Being white female I didn't set any alarm bells ringing in the beginning. Since I have looked back through my family I have found that I have black ancestry - Irish and Romany Gypsy. I only started experiencing symptoms in my early 30's although I do recall some strange illnesses when I was a child that had no explanation. I know no-one else with Behcets, so I have felt extremely isolated with this. I wish your son the very best and I hope when you get to Turkey and the specialists can help to get some positive treatment in place. God bless x

Ashveer
Ashveer in reply to sam0511

Thank you, you are very lucky at the stop stage of RVO, with azaith. quickly, that makes sense, doc's in Canada do not take patients seriously (despite me telling him, something is very wrong with his optic nerve, please do MRI, he said, I just treat the eye, it is not my job, go to your GP - we did, she said that doctor is specialist and looking after your son, eye, I do not know, so I took it upon myself to ask her to refere me to doctors who may be able to ID the disease of any kind at that point...it is sad story, with doctors lacking compassion...as for Azaith. I am worried it may stop working also, in time, only been 7 months, and already the issue of low blood count in trend ....Dr. Akmar told me that when and if we go to see her, she can discuss the medication and also other two doctors, her colleagues Rheuma. and VIsion doctor should also examine him...besides this, explaining this to my family is difficult, the social aspects of this rare disease or any is always difficult in social setting/home enviornment, you sure find out who is there and not there from the conversation tones and when and if they call , and how they call...I feel that when you laugh, everyone laughs with you, when you cry you cry alone...it is easy for people in my social to make comments and make suggestions and how I should be doing this more positively, only if they see what I see....we are from North India, Sikh population, our roots lie in Iran ancestors specifically, my last maiden name comes from still village in Iran, Hunjan...so not surprised for this, I think my son is HLAB5 + but may not carry the Antigen HLAB51, which has worse relapse prognosis...but truly luck for you being in anywhere but in Canada....it has gone to his brainstem, and nobody cared,...we cannot sue any doctor in Canada, we are depend. on them...the med. system is free but with cost of life for rare diseases, people get worse waiting for MRI etc....we did...

sam0511
sam0511 in reply to Ashveer

I just hope you get further in Turkey - I have no genetic markers - just diagnosed by symptoms. My Consultant has just 9 Behcets patients - just two females and I am the only one with neuro Behcets. So I feel very very lucky to have got a diagnosis at all. Steroids are a wonder drug, and for me they brought things to a screeching halt - but it is also a devil drug and cannot be taken for long periods. I will ask my consultant about low blood count and if mine goes that way what can be done. I will share with you anything I find out.

Ashveer
Ashveer in reply to sam0511

THank you, I remain determined to go to Turkey, I know that it will be worth it to see these doctors, as they may suggest future drugs, one is remicade in case the other eye becomes involved...it is the other eye that is more worrysome...I read one report from Jordan, where a young man had 2nd eye involvement after two years of unilateral...but I am not sure what med's or how effective they were for him...Dr. Yazicic in video at youtube also says that after 5 years it is rare to get a new eye disease, it is nearly coming to two years, perhaps for you and Ashveer, the worse is over, as the disease itself manifests the strongest in the inital few years....touchwood, will stay in touch...and you too..take care..

sam0511
sam0511 in reply to Ashveer

I didn't know about the five year period - thank you for telling me this. I am glad at least there is another option to try regarding medication. Each individual case of Behcets is different - what hasn't worked for one will work for another. I understand your worries - I have been through all that myself, just maybe you will be lucky. I pray that when you get to Turkey you have good news. Keep in touch. Best wishes to your son.

Urgently, you must have MRI as first step....nothing else will come close to any confirmation, except deeper level SPECT, which is discretion of doctors, but MRI A MUST ...our Son had lesions in the brainstem/pons, and speech impaired permanently, BRVO, right hand motor symptoms, weakness, and now Neuro Behcets - severe morbiity/mortality for young men especially....please get an MRI ASAP..

Akbalik
Akbalik in reply to Ashveer

Thank you, I did a few mri after first stroke,

Recent MRI are clean, and I contacted with Mrs demir through email, she said neuro behcet is very rare and it must show in mri , my mri didn’t show any neuro behcet evidence. I am going to do cfs soon , Please let us know how is meeting with Dr in Turkey.

Ashveer
Ashveer in reply to Akbalik

Tks for update, she wrote to me few times during consultation, but last letter of update she did not reply,...I will update, as next MRI Sept. 4, after that, getting it coordinated visit...I am happy for you that it is not NBD, but sometimes as she must told you have symptoms of NBD and that has to be checked with MRI always so they don't progress, follow her advice, She is one of the most expert doctors, I read her reports online, and this NBD is very scary....

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