Ok, this is gonna be difficult....got a year or two to read???
I went to the doctor today, the gp, and told him about my newest ...malfunction. My left hand and foot have been going numb off and on for the last 6 or 7 months. sometimes so bad , they hurt...bad. Oh and I need a anti-inflammatory again because my right hip is killing me , and could he up my dose of mirapex, cause my legs are really bothering me. Never seen this doc before, my regular was off, this is his associate. told him I had a call into my rheumatologist to start my anti-malarial again cause I was having symptoms...again. (decided to pitch my pills 3 years ago cause I was too young to take so many, and I wasn't "sick")
I have a neurologist (complex migraines), an allergist (chronic rhinits/sinusitis), an eye doctor(astigmatism and for check up every 2 years due to a med I take), a pulmonologist (sleep apnea), a gastroenterologist (IBS, GERD, gasteroparesis, diverticulosis), a colo-rectal surgeon (retro-rectal endometriomo removed 5-8-06 along with my tailbone cause it was in the way),a urologist (urinary retention) a rheumatologist ("poly-arthritis" always test negative for SLE and RA, but sed. rate always elevated. multi-joint pain for....almost 10 years), ob/gyn (have had 3 surgeries, adenomyosis, endometriosis and lessions) and of course a gp(depression and RLS)....did I forget anyone?????
Did I mention , Im not sick?
So anyway, this doc says (as he welds my "folder" which should be a "binder") he thinks I need to make an appointment with a neurologist ( how handy, I have one) cause he thinks I might have MS
So I come home and do what anyone who lives on the computer might do...I open my search engine and enter MS..........OMG......
My life is starting to make sense....
I have had a couple "episodes" of unknown etiology...where I have become totally non-functional for 3-6 weeks.
The last time, they called it mono cause my epstein-barr was positive
time before that, they had no idea...but both were very similar to me.
Ill come back later and add more...tired right now.....and confussed.....
Replies
wow... u HAVE been through a lot.... these dr\'s never seem to know what they\'re doing.. you go to so many, and you would think, with all these so called \'professionals\' getting money to look after you, at least one of them would recognise ms ??? or so you would expect....obviously not...
on a more positive note, im glad you finally got a diagnosis, and should hopefully start feeling better very soon.
in the meantime, i suggest you do a bit more research on ms, and all your symptoms, and get a plan of action together, so if ur dr thinks now he\'s going to sit back and do nothing , again, he\'s got a thing coming...
take care.xxx
Confusion: that\'s where we all started. Go into your next neuro appointment informed; ask knowledgeable questions. When i was dx\'d, i had no idea what i was entering. Like yourself, i had to know. It has a name: MS. We are here to make sense of it.
I got it - just about what I\'d expect, but loads of other things as well - you have been in the wars haven\'t you. JaneD.
Seems noone understands what we feel. I hope you keep up a postive attitude while all of this is going on. Huggs!
dear rbear,i just read your respones to one of the post\'s(omg i forgot what it was already)then i clicked onto your page.like everyone else here you have been thru alot.i have ms.you know with everything going on with you,it\'s so hard to pin point what symtom\'s go with what.i think talking to your neuro is a great.that\'s the best one to help in this area.so many symptom\'s can go with alot of other illnesses.it\'s the not knowing that drives you crazy.i\'m glad you wrote a book,it\'s good for you to write journal\'s and get support from this wonderful site and so many caring & compassionate people.
First a big hug to you! You have been through such a long, never seemingly ending ordeal with doctors and tests and feeling like _____ waiting for some doctor to come up with the right focus and then begin to get down to it all, because irregardless if they find it on a test, or can figure out which way it goes, you are still the one who deals with it every minute of every day. Very frustrating, but you are at the right place to be for compassionate and understanding people who understand how you feel. Welcome to Daily Strength, where here, you are among those who care! Express away! Big hugs and take good care Ellen
Oh, can I relate to what you\'ve been through. My epstien barr always comes back positive. I\'ve been told that it is because I must have had mono sometime in my past and that it will always be positive. I also had someone on another board that had read an article that they are studying the effects of epstein barr and another virus and seeing if there is a possible link between them and MS.
Stay positive. There are worse things. What I keep being told is that while MS is lifelong, it isn\'t life threatening. I\'ve lost my parents, grandmother and several close friends in the past 8 years. I\'ve been to more funerals than I care to count. So when I say it could be worse, it really could. My best friends husband died last year at age 39 after a 3 year battle with cancer. He had a 5 and 9 year old too. I saw what he went through, what the entire family went through and even on my worst days I keep telling myself, it could have been that. He had a horrible, horrible ordeal. Something I wouldn\'t wish on my worst enemy.
Anyway, I think being positive and keeping a sense of humor get you through anything. That and having support.
Hugs,
CJ