Hello all! Back from my neuro appointment, she was an MS specialist, yes was, like was my doctor and is not anymore. She has ruled out MS! says there is absolutely no signs of MS, with the exception of my symptomology which could be alot of other things. Next paragraph, my new doctor will be Joseph Nichols. He is a neuro that specializes in headaches/migraines. After my little trip to the ER a few weeks ago, speaking to my MS neuro, she says it is absolutely feasible for someone to have this "9 month migraine" I've been teasing and joking about. Ok, so not really a 9 month migraine, but possibly multiple migraines strung together to seem as if I am always symptomatic. I was told a lonnnnnnnng time ago (1999?) that I had complex migraines, they can present in tons of different ways. Nausea only, aura only (mine is visual disturbances, flashing lights and such) headache only, light sensitivity only, sound sensitivity only , numbness and or paralysis of the limbs and / or face usually unilaterally, or any mixture of the above and then some. my 2 worst up till this last one, I broke out in a sweat, puked, passed out, but had no head pain. those 2 landed me in the ER. Looking back at my medical records, there were other milder ones of the same nature, but I remember those 2 and this last one VIVIDLY! So now MS neuro suggests Topamax prophalactically (which can take months to kick in and can worsen numbness....oh goody!) and this new doc, who has to review my records and unless MS neuro says "see her now!", next available appointment is January! She also wanted me to see a Fibro specialist (which by the way I was dx'ed for the 1st time in 1993 per my medical records....be nice if someone told the patient!) and I told her, one at a time please! So I guess it would be a good idea to start tracking my symptoms so migraine doc can see what I'm talkin about, instead of "I have it alot". well thanks guys for listening, believe it or not I have a migraine as we speak (SURPRISE!) and am chillin in a dark room with my massaging slippers, my electric blanket and you all!!! Love ya all!, Lorr
Replies
topamax is a hard drug to get used to depending on the dose...grin ...but it dose work wonders for the migranes... i used to take imatrex for my migranes...expensive little drug that... mind you so is topamax here in canada...sigh... but since being put on the topamax for the epilepsy.. i am currently holding steady at 200mg as i take two other full time seziure drugs and one part-time... i no longer suffer from the migranes...only very rarely....
side effects in the first little while include weight loss as well....grin... but that goes away after awhile ...sigh...grin...
did not worsen my numbness that much either by the way.... just a footnote there....\\
hugs
heather
so sorry you are getting the run a round, you would thank doctors would know what to treat you for by your medical records, but guess not.it would be to hard to just go over your records and read. guess you can tell i get feedup with doctor sometimes. you hang in there maybe one day you will get that special doctor that really cares.
Hope your new DR and adventure gets you some answers and gosh also that the headache goes away! I think keeping a journal is a good idea, especially with new DR and all the questions. Hard to remember when and how long things come and go. Topamax helped my best friends mom\'s headache tremendously so hopefully it does you as well! As for making the numbness worse, I was put on it for the help of my tingling and numbness feelings but had to stop by time I got up to the 3rd upage dose because my hand and arms were so tingly I couldn\'t sleep. Everyone is different though and depends on the dose and that can always be adjusted. So all the best to you!!! Take care and have a great day!
Hugs, Michelle
Greetings Rbear,
I was not going to tell you I thought you were def. not Ms, bec. I\'ve never seen you nor seen any of your symptoms. But I never thought it was MS! I\'m not being smart- I thought it was some other type of neurological disease: but the migraines figure! my ex. gardener used to get them-no pain at all - nausea, aura, hypersensitivity to visuals & audios. No Dr. could Diagnose him - his mother did (she\'s a nurse). But am greatly relieved for you - if it\'s migraines - it\'s a question of trial & error. Fond regards JaneD.
I hope you can finally get some real answers. Sorry about the headaches, I sure hope the meds help. Lots of love kim
Start calling your neuro\'s office everyday and tell them you can\'t wait anylonger to see migraine doc. I think after a couple days persistance may pay off. Atleast maybe you\'ll get put on the cancelation/call list at specialist. This happened to me once and my scheduled appt was for 3 months later, but they called me 2 weeks later and got me in the next day. Good luck sweety!!!!! I wish i could take both of our pains away!!! LOVE YA!