Hi, I am an American Board Certified Neurologist with vast experience in diagnosing & treating all neurological as well as all other health/medical conditions. The expert to whom this question was initially addressed is not available now and the company has made this question available for other experts too, and I am very glad to help you with your health concerns.
I am sorry to hear about your health in the form of Behcet’s disease, and also the complications associated with this disease. As a neurologist I frequently diagnose & treat this type of health situation and I can certainly help you in this regard.
As you may be already familiar Behcet’s disease is an inflammatory disease with immunological basis and patients with this disease present with various neurological and non-neurological manifestations and many of the symptoms are recurrent in nature too.
The various neurological manifestations that a patient with behcet’s disease may include one or more of the following;
Aseptic meningitis (inflammation of the brain coverings called as meninges but without involvement of the brain)
Brainstem meningoencephalitis (inflammation of the brain tissue in the brainstem area, as well as inflammation of the covering around the brain called as meninges)
Cranial nerve palsies (such as optic neuropathy affecting the vision)
Myelitis (spinal cord involvement)
Peripheral neuropathy (irritation of the peripheral nerves in the legs or arms or both)
Cerebral venous thrombosis (clots formed within the venous drainage system of the brain) etc.
Not the same patient generally and luckily experiences involvement of all these neurological systems, but the above are the various possible neurological conditions a behcet’s patient may experience.
Please see if someone is having behcet’s disease, and also having neurological manifestations such as you, then you need to be seeing a neurologist on regular basis for the proper diagnosis and care of your health conditions. It sounded to me you are seeing your primary care dr, but not a neurologist, please see seeing a neurologist is the correct approach in these situations since neurologists are very familiar with the diagnosis and management of behcet’s disease.
I see you are also having now new manifestation in the form of balance issues which unfortunately has not improved so far, in addition to the other manifestations you had been having including fatigue etc. And I see steroid (solumedrol) used to help you but sadly you have not been receiving it for long time now.
Please see the most prudent thing to do now is to see a neurologist so that you can receive a thorough neurological examination in the clinic followed by relevant neurological investigations and then treated appropriately. The treatment will include intermittent courses of steroid solumedrol as necessary, and also if required maintenance immunosuppressive therapy with one of the agents mentioned below (to prevent future complications);
Please see this type of health situation can be diagnosed & successfully treated, so please not to be scared or not to lose hopes, an early diagnosis and treatment gives the best chance for quick & complete recovery - so please try to see a neurologist asap and also try to undergo a thorough neurological examination & neurological investigations as discussed above, followed by appropriate treatments that will include steroid solumedrol, along with one of the immunosuppressive medications mentioned earlier above to help in preventing any complications that may occur in the future.
Wishing you a quick & complete recovery! And also Wishing you the best health!
All the very best!
Please let me know if you have any additional questions or if you want to discuss this further.
Assuring you the best services!
Dr Subbanna MD