Hi there. I'm a 35 yrs old and I'm feeling quite uncertain about my health. In 2004 I was diagnosed with mild to moderate fibromyalgia by a rheumotologist (pardon my spelling). At the time I was just relieved to finally have a diagnosis because I had so much going on and it was always one thing after another. Anyhow, I had been doing really well for quite a few yrs..no major flare ups. I apologize if this post is going to sound all over the place..but that seems be how my mind is these days and I have quite a bit of confusion and tend to forget alot.
Ok for the last year I really have not been feeling well. I have suffered from migraines off and on since being a teen, but in the last year it's been a lot worse. I have had cognitive issues for the last couple yrs..or at least I have noticed it for this long, but have never really said anything. I used to be an excellent speller and I now struggle to remember how to spell simple words and have to use a dictionairy a lot of the time. I cannot remember things that were told to me just a couple hours or a day before. My balance is off..I have a hard time steadying myself.
This has been going on for awhile. Before Christmas this past yr, I finally opened up to my doctor. Told her I felt as though I was losing it. I had started having this pulsating, elsymptomsectric shock like sensation in the left side of my head. extreme left leg pain and two toes on my left foot were completely asleep/numb. My previous blood work came back ok, except for low Iron. I asked if my fibromyalgia could have progressed into this..she did not give me a clear answer..but my guess is "no"..This feels totally different from anything I felt with my supposed fibromyalgia.
Earlier in December I had this excruciating pain in my upper spine, the best way I can describe it is that it felt like there was a red hot metal rod going down vertically through my spine, from the base of my neck to just below my shoulder blades. This lasted about 2 days. Forgot to mention this to my doc..have since learned to keep a journal of symptoms and what not, as I tend to forget a lot! She booked me for MRI, based on the strange feeling on left side of head and cognitive issues..also my vision was going all wonky. MRI came back normal..a relief, of course..but still unanswered questions.
A few days before I had MRI, I started with numbness and feeling tingly on the left side of my face. First episode lasted a little over 24hrs. It has happened about 6 times since mid december. My cheek is tingly, it feels puffy..also feels like my mouth or lips are drooping, but I look normal in the mirror. Anyways, MRI came back normal, and I told her of new symptoms..she referred me to neurologist. I only see him in June. A major concern of mine is that I did my research on this neurologist and he's had alot of complaints from patients. I'm a very sensitive person and I feel like I'm losing it as it is..I don't want to wait 6 months to see a neurologist just to get there and have him make me feel like I'm stupid and crazy. I already feel that way. A lot of the complaints patients had was that he is very condescending , very impersonal, will not make eye contact, and quite frankly rude.
I need someone patient who will listen and be willing to investigate if needed. I don't open up easily, I'm always afraid of burdening people..but at this point my health has got to come first. I cannot go on like this. Just a couple weeks ago I was in a store and my left leg just went all wobbly and gave out, my speech is getting worse..I have a hard time pronouncing words, and I can't think of what I am trying to say,,forget what I was talking about mid sentence.
Can someone give me advice? I feel like this is beyond fibromyalgia..if it was ever even fibromyalgia in the first place. I'm just physically and mentally exhausted..Oh! and bladder incontinence! Doc thinks it's because I have had children..I had my first at 18 and my second at 28..I was having the incontinence and frequent urination before I had my second. Now it's just worse..heaven forbid I laugh or sneeze because it's not just a dribble. I get up to the bathroom minimum of 4 times a night. It don't seem normal to me.
I'm sorry this was just not ONE simple question..I just felt like I had to get everything out to give whoever a better idea of what was going on..I realize I may just have confused you all more..lol..I'm sorry.
My biggest concern now is if I'm likely looking at MS? My mother's best friend has ms and she seems quite concerned..she is the one who pushed me to open up to my family MD,
to whoever can make sense of this and offer advice, I thank you in advance.
Jenn