Help! Bechet's In Alabama

[ Expand all ]

• 
  Dcuttiepooh | published 4 months ago | Originally written in English Help! Bechet's In Alabama

  I have had this horrible disease for about 4 years now. I have seen so many doctors and specialist.I meet a rheumatologist here in Dothan Al that diagnosed me.He changes my meds up all the time and I now he is doing the best he can with what info he has.I just wish there was a doctor close to me that knows this disease and could help. If anyone has any info on a doctor or more information to help my doctor or myself please let me know. Hope everyone that is going through this has more days with no flairs ....heres wishing!
  38 replies to the topic — see all replies

  • 
    JOUX published 4 months ago | Originally written in French

    courage, dear friend, is it a boy or a girl?, you are not telling us! I am a 50 year old woman and I live in France..I hope that you will find help from the US Behcet association!!at the beginning of my disease, 30 years ago! I become a member of that association because there was nothing in France!!and it's true that it's so hard to live with this disease!!I am far away but I am thinking of you and hope that you will find help! Hugs and kisses. dominique JOUX
    you can read about my own experience and have my message translated into English!!

    Notice: This text content has been translated automatically by a third-party service.
  • 
    sslaird published 4 months ago | Originally written in English

    I m in Mobile! I have been struggling with this for at least 10 years. I think I have found a good neurologist today; he gave me pain medication for my ear pain that is actually nerve pain. He is also referring me to a Rheumy who has seen more than one patient. My current rheumy had no idea what to do about the cns symptoms; actually told me that if I could exercise for 90 minutes a day my life would change (no kidding!). When I asked for a referral to a neuro, he refused, telling me I needed to follow up with my ENT who already told me there was nothing wrong with my ear I do hava great Internal Medicine doc who has saved my life more than once. Also a good Opthalmologist.
  • 
    jjbridwell30 published 4 months ago | Originally written in English

    Hi hun, I know what you are going through. My boyfriend has been dealing with this disease his whole life. He has had some good years and bad years with it. He is on so many medications that I believe to be messing him up even more. He goes for blood work at least twice a month plus some other stuff. Yes I wish there was a doctor close by that knows more on what to do to surpress these flairs. It makes for a harder time for him to live his life to the fullest and it scares him. I am doing everything in my power to find out more about it and to get him the help that he needs. Best wishes to you and all. Hopefully we all can find a better solution for this rare disease. God bless.
  • 
    MzDJRoberts published 4 months ago | Originally written in English

    Hi, I am in Huntsville AL. I have have been dealing with this crazy disease for the past 20 years. I have a great Family Med Dr who has explored the different meds with me. I also have a great Rheumatoligist who has aout 10 other patients with this special disease. They have worked me me a lot to help elivate the pain and complacations that come with this burden. I thank God that I have been blessed not to have had a flare in over 2 years now but I know that that could change at anytime. I encourage you to hang in there and continue to work with your doctors but do as much research your self so that you can all explore new treatments.
  • 
    luvflowers published 4 months ago | Originally written in English

    Hi Dcuttiepooh, I am in Mississippi not far from you. And your story sound's so much like mine and sound's like we've walked in each other's shoes with this disease and doctor's. After 7 long years of dr's specialist and professor's of reumatology & neurology and test after test ive been diagnosed with
    Neuro- Behcet's along with poss lupus and other auto immuine diseases. The professor or reumatology & neurology that finaly dx'd me was at The University of jackson,ms. My dr's said they had only saw 2 cases like mine where the paitent had Neuro-Behcet's also now my Behcet's is now in my spine causeing terreble numbness in my back leg's and feet. Not a good feeling for sure haveing a time walking.
    The reummy there i see is familuar with Behcet's also the neuro i see there though i am also still in a bad flare even with my meds may have to up my pred bad as i hate to. I hope this helps you some.
    And sure hope you feel better soon and find a dr that can get you all sorted out with the right med's.
    Wishing you have a better day today!!!!!
  • 
    sslaird published 4 months ago | Originally written in English

    MzDJ, what meds do you take? Would you mind telling me your doctors name so can get my docs to tlk with him or get an apt if I need to? I am experiencing more CNS symptoms even though my ulcers r better. I am losing myself in this disease and it is scaring me.
  • 
    MzDJRoberts published 4 months ago | Originally written in English

    I am taking up to 16 meds but they are trying to wen me off of some of them now. I am taking meds for Behcets, high blood pressure, Diabetes, seziures and cholesterol. I am taking folic acid, keppra (anti-seziures), depakote (anti-seziures), lasix (high blood pressure), losinopril (high blod pressure), Lorcet plus (pain Killer), zanaflex (muscle relaxer), potassium, amitriptyline (anti-depressent), pravastatin (cholesterol), Humlin R & Humlin N (diabeties), Vitamins D3, Enbrel (bechets), thalomid (bechets), zantac (GERD), methotrexate Bechets) and Aspirin (325 mg). Oh and lest I forget I take a burst dose of prednisone as needed. I take 40 mg for up to 3 days. I am currently trying to wen off of amitriptyline, lorcet plus, zanaflex, potassium, thalomid and lasix. My Doctors names are Dr David Bram he is family medicine (256-539-7722), Dr Robert Hunt Rhumetalogist (256-551-6510), Dr Theodros Mengesha my neurologist (256-265-2695) and Dr Bobby Johnson my endocrinologist (256-551-4505). Hope this helps you.Call me anytime you want to talk 256-425-2678
  • 
    ouafa59 published 4 months ago | Originally written in English

    My god all these drugs together, Enbrel and thalidomid .... It seems really too much . i'm just a patient but think honestly that sometimes the doctors give too much drugs that can have lots of side effects !
  • 
    pjwells published 4 months ago | Originally written in English

    Hello, new to the group, but could any of you give me the type symptoms you are experiencing when you refer to the central nervous system? I would be glad to share any info I have I am in South Carolina.
  • 
    sslaird published 4 months ago | Originally written in English

    I have muscle "twitches" that cause me to bite my tongue, click the right side of the mouse, move my head back and forth, kick out sometimes. The neurlogist says this is due to spinal cord lesions. I am havng severe vertigo times two weeks; without the scopolamne patch, I would not even be able to open my eyes without gagging. I have been hospitalized for cerebritis, neuritis, and meningitis, all of which included headache and nausea. I have had countless attacks involving my right retina, they have resolved, and still have enough vision to drive
    The other kind of neuro bd involves strokes and TIAs I beleive, but am not sure.
  • 
    webshari published 4 months ago | Originally written in English

    I'm in WA State and have similar issues. My scalp is covered constantly with red, painful bumps and it sometimes spreads to my face. I had a person say once the Behcet's is like Whack a Mole. You get treated in one area and it moves to the next. My issue has been with pain. I have back issues too so the pain is unbearable. I get treated but we all know the astigmatism surrounding pain meds these days. Frustrating. I twitch. Last big flare I think I got the brain stuff. My neck was really painful to turn (and that's on lots of pain meds) and my headache was through the roof. I should've probably gone to the ER but right now, I'm so tired of doctors. Most of the time I'm stable and can live with the canker sores, skin sores, intestinal pain, etc... some days I think I want to shoot myself (not really but that's what it feels like)... my memory is really really bad, and I have issues my legs and arms when I get the headaches like that.
  • 
    luvflowers published 4 months ago | Originally written in English

    Hi Pjwells, I am too still new to this site but her are some of my symptoms not all for sure and i have cns, or as my Dr's call it Neuro- Behcet's Virtigo,Headaches Dizziness,hearing loss,titinitus, stuttering and looseing my word's, cant multitask any more, Severe short term memory loss due to heavy leasion load in the front lobal part of my brain, skin rashes,mouth ulcers, muscle spasams,and twitches, numbness,tingleing of feet & hand's & face It just seems to never end with the symptoms. Once you get one or 2 symptoms to ease up you have 3 more rareing to go. Wishing you a great day!
  • 
    karend published 4 months ago | Originally written in English

    Hi,

    My name is Karen and I work with The NOMID Alliance, an org for CAPS and other autoinflammatory diseases, and have sent a few patients to see this doctor in New York that is at the Behçets Center. You can read about it in detail on the ABDA site at this link: www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&... Yusuf Yazici, MD

    Behcet's Syndrome Center,
    NYU-Hospital for Joint Diseases

    246 East 20th Street,
    Suite102, NY, NY 10003

    646-356-9400

    He is very good, and many patients have felt he was the best they ever had, and he specializes in Behçets.

    I hope that you feel better soon!

    Karen Durrant
    nomidalliance.org
  • 
    Mirta published 4 months ago | Originally written in English

    Hi! I'm Dr. Mirta Avila Santos and I work at the American Behcet's Disease Association. On our ABDA website, www.behcets.com, physicians are listed under physician registry. There are two physicians who treat Behcet's Disease in Alabama:

    Dr. Mura Kennedy
    Specialty: Rheumatology
    Office Address:Simon Willamson Clinic P.C.
    832 Princeton Ave. S.W.
    Birmingham, AL
    Office Phone:205-206-8450
    Number of Behcet's patients treated: 1-5
  • 
    Mirta published 4 months ago | Originally written in English

    The other physician I found through our registry at www.behcets.com in Alabama is:
    Dr. Vijay Jampala
    Rheumatology
    2828 Highway 31 S. , Suite 108
    Decatur, AL
    Office Phone:256-350-0600
    Number of Behcet's patients treated: Not listed.

    As mentioned before, Dr. Yusuf Yazici specializes in Behcet's Disease at the Behcet's Center in New York, at NYU Medical Center. Many patients from all over the world travel to see Dr. Yazici for treatment. All his information is listed on our website.

    I f I can be of assistance, please contact me at 1-(631)656-0537 or contact Sandy McElgunn, ABDA President and hotline operator at 1- (800)723-4328. I hope you are feeling better!
  • 
    luvflowers published 4 months ago | Originally written in English

    Mirta, Thank you so very much for the info on Behcet's dr's in Alabama. That would be a lot closer to me than NY. Hope you have a great day!!!!!!!!!!!!
  • 
    Mirta published 4 months ago | Originally written in English

    You're welcome! Have a great day and feel well!
  • 
    RandyDora published 3 months ago | Originally written in English

    sslaird, Luvflowers, I live in Daphne, Alabama. Both I and my daughter have Behcet's. Last month my new Internal Med Doc decided that I have Lupus and hypothyroidism also. I'm not sure if I agree. I have had Behcet's since childhood but was diagnosed only after my daughter was diagnosed. I am 54 she 20 she was finally diagnosed at age 17 by a great childrens Rheu. Doctor in Pensacola Florida. He did great treating her. But when she turned 18 he could no longer treat her. Since then we have tried to find doctors who would take us. Most turn us down. The ones we have tried are at a loss in what to do for us. None have had a Behcet's patient much less a mother daughter combo, and treat us as if we have RA some have said it's all in our head . As for my previous Doctors , as soon as they found out I had Behcet's I was dropped. I would love to know the name and address of the doctor in Jackson MS, It's only 2 hours fom me. In the last year both of us have stopped taking the "Big" drugs and our symptems have not changed. We both take alot of natural supplements and they seam to help as much as the expensive prescribed drugs. I still take pain meds, the headaches and joint pain would be unbearable without them. I have yet found a relief for my scalp. the redness, itching, leisions and swelling. Anyway, any suggestions would be appreciated.
  • 
    Dcuttiepooh published 3 months ago | Originally written in English

    Thank yall so much for all the info given.I have contacted the Decatur Al and Birmingham Al office.Will update when I actually get an apt. Hope everyone has a great day.For me its another day with a flair up.Hoping to feel better soon!
  • 
    luvflowers published 3 months ago | Originally written in English

    Hi RandyDora, I well know how you feel have been through so much as yourself with med's constantly being changed to dr's not knowing what was going on and diagnoseing me from Sjogrens, lupus, fibromyligia, Scleroderma etc. My dr's at the University of Jackson have had Bechet's patients' and still have Bechet's paitents . Not many but they are femiluar with the disease and treatments and do wotk together on each individual paitent and there specific needs and treatment best for them.
    I am diagnosed from my Professor of rheumatology there with Neuro-Bhecet's & Beurger's disease.
    Both rare vasculitis type diseases, Ieven had to quit smokeing for the Buerger's becuse of the severeness of clot's and strokes and amputation of my leg's and hand's. Like you i have stoped all strong chemo med's and lot's of vitiman's raw vegie & fruit juceing except my pain med's and predinsone 10mg and a compounded medicine for Behcet's ulcer's that my rummy in jackson prescribed (colchicine). the phone no. TOLL FREE 888-815-2005 or 601-815-2005
    or google University of Mississippi Healthcare and click on dr.
    My dr rheumatologist is DR. Kenneth j. Hardy my Neurologist is DR. Robert m. Herndon
    Wising you the best of luck and let me know how your visit go's. You dont have to be refered but may help you to get in faster. It also takes me about 2 hours to get there from my house.
  • 
    RandyDora published 3 months ago | Originally written in English

    Thanks alot. Will call tomorrow.
  • 
    luvflowers published 3 months ago | Originally written in English

    RandyDora, Youre very welcome. Sorry for all the typos, My power here kept going on and off messed my putter up and my behcet's is flaireing very bad and have hard time spelling correctly and it's just getting worse. Ment to say im juiceing lots of vegie's and fruit to help my behcet's and buerger's to get more blood flow and help with the joint pain. Along with a few med's and several vitimans. Even the rehumy at the university said he thought it would help some and be an good idea on the juiceing. You will find them all
    there to be so kind and careing and seem to go out of there way to help you and your situation!
    Hope you have a great & pain free weekend.
  • 
    RandyDora published 3 months ago | Originally written in English

    I don't Juice because it causes my never ending whole body yeast infection to go crazy. The only fruit I can tolerate is watermelon and grapes. For me the more fruit I eat the more leisons I have. I have found that spraying Zinc (such as Zicam) in my mouth everyday, I tend to have less and not as many infections. My daughter has trouble keeping her Vitamin D3 level up so we both take them and it seems to help also. Again thanks for the info.
  • 
    luvflowers published 3 months ago | Originally written in English

    I also have the never ending yeast infections from my mouth through my whole body and at times i cant juice or eat certin foods becuse of the ulcers and raw bleedind mouth, My dr's and rummy says it's the predinsone ive been on for the past 2 yr's to help control the flair's so they have give me a never ending prescription on my Diflucan for the yeast infections as long as im on the pred ill have trouble with the yeast
    infections. My vit d also always comes back very low at 10 one time with blood work so i had to take the 5,000 mg's for a week now im on 1,000 mg a day and it still comes back low but not a 10. I also get the skin lesions, fever ,weight loss, naushua,etc but my dermatologist gave me a mouth paste for my mouth ulcers and skin cream for the skin ulcers that works fairley well it has a steroid in it.
    I havent tryed the zinc but at this point i will try anything when they start breaking out.
    Thank's so much for the info wishing you and your daughter the best of luck with your appt's. one of the med's my jackson rummy has me on is colchine is used for behcet's and comes from the dried seeds of the autum crocus it's for the ulcer's and seems to help more than any thing ive tryed you can google it online also. ~Diane~
  • 
    luckygirl1974 published 3 months ago | Originally written in English

    I have the muscle twitches too thought it was a side effect of some meds i was taking. does anyone else have problems with their ears? pain,popping when you swallow,problemshearing,ringing?I am just getting over a bad case of ulcers right now. I've had them in my mouth for about 3 months now. and i am tired! i just want to sleep! i can't eat or drink. my husband says i look awful he thought last week i was going to die from dehydration and malnurishment.can't wait until they are gone so i can feast! but, I am sooo tired!No one here understands. and the dr's are not sure of the outcome. I think there is a light at the end of the tunnel just not sure if it's a train or not!
  • 
    luvflowers published 2 months ago | Originally written in English

    Hi Luckygirl1974,
    I have lot's of problems with my ear's. I have the on & off pain like earache, and a sort of popping presure
    type thing as if you were going up in a high altitude area and i will swallow or yawn to ease the presure in my ears. Severe ringing in my ears' and neuro says i have lost 25% of my hearing in my right ear.
    I have also be to the er several times for dehydration and given drip. Bless your heart I hope you get over your flair soon. Im haveing to up my colchicine and predinsone now due to a bad flair trying to get these ulcers and Bechet's flair to calm down for just a little while. My dr's also not sure about mine either so i take it one day at a time. Wishing you feel soon!
  • 
    sslaird published 2 months ago | Originally written in English

    i went through this about a month ago and I responded well to anti viral medications. My internal med doc finally diagnosed me with herpes zoster which is like shingles, but mine was in my ear and the side of my face. Talk about driving someone crazy! My rheumy kept telling me to see the ENT; the ENT kept saying it wasn't my ear. It is so frustrating to go from doc to doc, pay lots of money and time, and be told "this shouldn't be happening" and they just "cant understand" why I am in pain, or am exhausted, or cannot put two thoughts together.
    My new rheumy prescribed colchicine, but I havent been able to afford it yet. I am taking remicade, methotrexate, and prednidsone right now. Has anyone ever gotten well enough to go back to work? If so, how long were you off before you could return?
  • 
    luvflowers published 2 months ago | Originally written in English

    Sound's like your still haveing a hard time with your's also Sslaird. My neurologist at one time during a break out along with the bad pain thought i could hav the shingle's. But he and rummy just suggested to up my pred and Imuran at the time for the severe flair then taper back down on the pred.
    And im with you surley on the Dr's Money and time it alone will drive you insane and keep you sicker haveing to be your on advicate. You have to excuse my spelling that is the cns part i will re read my typeing for typo's and it will look right but not be spelled righr or i will type my words backward's.
    My Dr's also call me there Special paitent becuse i have so much going on also. I told then i didnt want to be ther special paitent just get me to feeling better and find out what all was going on.
    Well my Colchicine was $88.00 for 100 was high but still cheeper than that one Boniva pill for the bones dr's prescribed me that caused me more pain than good. I have not got well enough to return to work but my Bechet's is in my spine now and causeing numbness in my leg's feet, i have neuro-behcet's so last mri i had 12 frontal lobe leasions in my brain they cause shrt term memory problems
    ballance issues,memory recall, severe nerve pain etc. Hopeing you feel better soon!!
  • 
    my3boyslte published about 1 month ago | Originally written in English

    Wow... my behcets goes crazy too. Im in n.e. Ohio. I finally found a good rheumatologist. I also see a neurologist and dermatologist. Love all three of them. Officially dx in '09.
    I also have the popping in the ears and continuous sores in the ears(not fun).
    I also have Lupus and rheumatoid arthritis. Dx with Lupus in '06.
    Hang in there and hope you all find Dr's that you like and help you!!
  • 
    stephanieceleste published about 1 month ago | Originally written in English

    Is there anyone in the Birmingham, AL area with Neuro-Behcet's? I am finally going to see a real Rheumy to start my treatment for this horrific disease. I was just recently diagnosed with Neuro-BD and it has been too many years of being sick, wrong diagnosis, thinking I was the crazy one. This disease is like a force that kicks my body especially when I am tapering off prednisone. Does anyone know what I could be looking for as far as treatment goes? I am happy that I finally got a diagnosis, however, now I am afraid of the treatment. So, again I live in Birmingham, AL and if anyone wants to chat please contact me.
  • 
    sslaird published about 1 month ago | Originally written in English

    isaw Dr russel Read in bham; he is an eye doc, and very good. i also saw dr spalding, but he did not change anything or consult with my doc in Mobile. he did give me shots for my hip pain that were incredibly painful and did not help.
    my docs in mobile started me on Remicade. I got it every 8 weeks after the loading phase, but we changed it to 6 weeks when it did not control the retinitis. I continued to have ulcers, so we tried Methotrexate. It helped somewhat, but I got terrrible headaches so I switched to Colchicine recently which seems to have helped.
    It has been 10 months since I started Remicade. I am finally starting to feel stronger,. I intend to work on getting my strength back to normal, then I will work on endurance. (currently sleep 12-14 hurs per day and I hate it)
  • 
    RandyDora published about 1 month ago | Originally written in English

    sslaird,
    who do you see in Mobile? I and my daughter are in the process of changing docs. I am so tired of being treated as if I had RA. I see a new neuro. Doc on Wed. My headaches never stop. Last head doc was positive Immitrex ( OOps on Spelling) was the way to go. Wrong!!! It has been suggested we go to the Mayo clinic. But I was hoping not to have to go to the expense of the travel. And not sure if they can help.

    Any one out there have episodes where a part of your body (arm ,, leg, etc) goes completley rigid with pain of an extremely powerful cramp.? My arms will get stuck ,lack for a better term, in one position, usually straight out or straight up. It takes my husband using his full force to get the limb to bend and go back to normal position. The only thing that has helped is Zanex (Muscle relaxer) but it puts me to sleep for hours. Which is embarressing when I am out in public when it happens. People think I am either crazy or having a fit. It would be quite funny if it didn't hurt so bad. I mean imagine walking in the mall and all of a sudden your arm shoots out you can't bend it the pain is unbeleivable. Once my whole body froze. I couldn't talk or move. I was sitting in a chair. My husband found me an hour later knew to put a zanex under my tongue and within 5 minutes the pain went away and I was fine. Shook up but fine. This is not my only symptem but the main one causing problems currently. My symptem list goes on and on. Much like everyone else.
  • 
    sslaird published about 1 month ago | Originally written in English

    I see several docs here in mobile. My fave is my int internal med doc, but he is not taking new patients. I see drs Divittorio and Baliog (diffferent hospitals) for rheumatlogy, in the middle of switching to Baliog simply because I find him more approachable than Divittorio. My neurologist is Eckstein, very approachable. I have had Dr morrison as a neurologist in the hospital and would definetly recommend against him. Neither neurologist has been helpful with pain or vertigo, but at least Eckstein tries while Morrison acts as if it is all mental illness.
    your muscle cramps sound horrifying. I used to have cramps, but not that bad. They might signal nerve damage or electrolyte imbalance. I stopped getting mine when I quit taking medication prescribed for bone density (also stopped getting a skin condition called granuloma annulare). Hope that helps!
  • 
    luvflowers published about 1 month ago | Originally written in English

    Hope all are well, I have a question on Dr's in the University of Birmingham Alabama on there knoledge on
    Neuro-Behcet's paitents. My Dr. Rheumatologist in jackson university relised me to my rhummy in hattiesburg,ms cause he says no since in me seeing him and her also. But what he did was give up on me and put me out to pasture cause of the behcet's in my spine now also in my brain to. I saw her for my 6month visit and she Freaked and said NO she needs help cause she has no experince with neuro-behcet's and she is not giving up on me to just be wheel chair bound at 51yr's old or any age. So she is getting me an appt at i belive uba university of birmingham Al she says they do treat paitents with behcets there and study the behcets disease. Dose any one know of any good rhunmmys or neurologist there
    since i see some here from alabama. Irealy just dont know if i can do this again ive been through so much with dr's and every test in the book just so tired of all it and the money issue also one wonders when do you say enough of dr's and med's and test. I also have severe bone pain and spasams on boniva for yr bones. Thank's for all input's and info you may have on the dr's. I may just go to the visit and see what the dr has to say but cant do the strong chemo drugs made me to sick. Thank's all
  • 
    stephanieceleste published about 1 month ago | Originally written in English

    Dear luvflowers;
    My name is Stephanie and my Neurologist is at UAB (Univeristy of Alabama at Birmingham). His name is Dr. John Rinker and his number is: 205-934-2402. Until the begining of this year he thought I had MS. But after a lengthy hospital stay and many tests and biopsies, Dr. Rinker concluded that I actually do have Neuro-Behcet's. He has waisted no time in getting in to a fantastic GI Dr. and I will see my Rheummy on the 17th of April. If you would like to talk at any time my email address is: stephanielaney2001@yahoo.com. I am wondering what type of treatment plan they will have for me. I hope all goes well with you, and email me anytime. Thanks, Steph
  • 
    luvflowers published about 1 month ago | Originally written in English

    Thank you so much Stephanie for the onfo on the dr's. My rhummy will be calling me with my appt's there at UAB it will be with a new rhummy that is supose to be knoledgeable of the neuro-Behcet's and a new Neurologist there also that has knoledge on behcet's well see I sure hope so.my current neurologist had one paitent with neuro Behcets but this one i had every visit he just poked me with a sticking pin and my back legs and hands was looseing all the feeling in them so i ask him was it just going to get worse to where i was going to be palilized and he said yes the behcet's was in my spine due newest mri of my spine. Not good new's for sure. So he realy did nothing for me just said up my predinsone when flairing so bad then taper back down. LOL! As far as what med's for you every one is different in there progression of bechet's and the symptoms of our disease so it's hard to tell what
    med's would be right for you. Im hopeing and praying You and i get good careing doctor's there
    that will get us sorted out properly and feeling lot's better for sure. At one time when i first got to the university of jackson my dr's were strongly wanting to do a brain bopsy on me if the imuran and pred didnt slow the disease down witch it didnt but that's one test i refused becuse of the risk and
    it 50% still may not tell the dr's any thing more if it was neuro-vasculitis or neuro-behcet's.
    Wishing you the best of luck with your dr. visit let me know how it go's & Hopeing you feel better soon
    ~ Diane ~
  • 
    pjwells published about 1 month ago | Originally written in English

    Thanks everyone for your posts. It helps me to understand my symptoms better, I do use a gel for the ulcers, I apply to the area that starts to tingle before it breaks into that painful stage. I have the generic for Topcort and it is Desoximetasone 0.05%. Maybe some of you may check it out.It does say dont use orally but I have for 27 years. Everyone have a blessed day.
  • 
    Veronica published 28 days ago | Originally written in English

    I struggled with behcets for years before I was diagnosed. I was diagnosed in 2008. I have severe panuveitis, migraine headaches, joint pain, numbness in my toes, GI problems just to name a few. I have a remicade infusion every 6 weeks, I take methotrexate and predinose for breaktrough. In addition I use four different eye drops, aciphex, coreg, verapermil, maxalt, phenergan, bendryl. percocets, soma just to name a few. I've done a lot of research on my own and have asked for certain meds. My meds work ok. I do have flares but not as often. The one thing I would like is a support group. I live in Northern Virginia and my doctors don't treat a lot of patients. Most of them only treat me. I was diagnosed in Chesapeake, VA so I came with my bag of meds. If someone knows of a support group in my area please share the information.