Hi again Angelic,
I have not been to a rheumatologist yet - have referral appointment (from MS specialist) coming up soon - dec 5th. When my symptoms first presented strongly (they'd been there for awhile), my PCP sent me to the neurologist at the small town clinic where I live. MRI's of brain & neck, EEG, x-rays, were ordered. It was then August by time results came in.... MRI showed several abnormal hyperintense lesions in white matter of the brain - both hemispheres, more on left vs. right - the largest being .8cm in left frontal lobe and some in the periventricular area. The cervical MRI showed extensive spondylosis, lordosis, bone spurs, and significant narrowing of the cord area at C5-C7 region, mild bulging of 3 discs but no cord compression. The EEG was moderately abnormal due to diffuse and frequent slowing of theta waves in a bi-temporal pattern - sometimes more on left vs. right. All said Clinical correlation advised...
I had not been to a doctor for years up to this year due to no health insurance and last Dec. 20th I finally walked out of my job saying I simply cannot continue to work feeling so miserable. If ya don't work and have no money = there are programs to help you right...! But I could not get health insurance no matter how hard I tried - too many pre-exisitng conditions---- bleeding fibroids, gallbladder trouble, I'm bi-polar... SO... when I walked out I was having a gallbladder attack again - had had a few and then I got bronchial pneumonia on Christmas day and was laid up for a month... Then my abdomen hurt so much - I cried and pushed at my new PCP (long story) and he sent me to a gastric surgeon.... all tests came out normal til he did a Hydascan which showed YEARS of chronic infection in my gallbladder and pre-cancerous changes....it came out on Feb. 28th.
I had a lot of increasing bladder pain during this time and after a ER visit and emergency tests at the urologists and then having a Cystohydrodialation of my bladder - discovered I have Interstitial Cystitis.... a very painful condition at times but often treatable and mine was and so far still is when it flairs... Then mid April I began to feel extreme vertigo and had a feeling I was losing conciousness at times, burning in my arms & back, extreme weakness, out of breath from just walking through my house, numb arms and legs, double vision, brain very foggy and the fatigue I had been feeling for years overwhelmed me.... about a week of this (I live alone and should have called the doc sooner but didnt) I called the ER squad cause my blood pressure was 180/120 and I felt a band-like pressure around my chest and pain like I was having a heart attack --- was in hospital 4 days... had a heart cath, x-rays, all kinds of blood tests and since all were basically ok... sent home. Two days later I was in the ER again - feeling basically the same and now slurring words... Only thing Er doc said was my reflexes were abnormal, sed rate 40 and terrible balance and I should see a neurologist... BUT! no insurance and welfare type help takes a long time for special tests...!
All this time I was also having intense pelvic pain -- needed a hysterectomy for 3 years due to massive bleeding fibroids but again no insurance! My uterus was the size of a 20-22 week pregnancy (I'm 49 a bit old for that!).... Finally talked the obgyn into doing surgery (he only charged me $500 which I didn't have so put on my already over extended credit cards). Had a total abdominal hysterectomy & bladder tie up May 14th... 8 1/4" cut and wore a catherer for 13 days cause my bladder just would not work... which caused a flare up of my interstitial cystitis and back to the urologist several times. I lost a lot of weight during this 6 month period.
I know this is very long.... but only way I know to let you know what has been going on with me... I hope you don't mind...
Mid June... feeling extremely numb, tingly, burning, brain fog, slurring, balance way off, vertigo, nausea, extreme fatigue again.... that's when the doc sent me to the neuro with the above results. Neuro after tests thought I might very possibly have MS...(developed pins & needles *****ling and weak/crampy legs during this time, more vision problems) went to MS specialist who after lumbar puncture and VEP being normal said didn't think it was MS but should have another MRI in about 3-4 months to be sure no new brain lesion activity going on.....Oh had a colonoscopy/endoscopy in July - showed acid reflux disease and hiatal hernia but all else ok.
So here I am... I'm about ready to go nuts.... I was never this way. I was very active and always told I look much younger than I am...I'm tired all the time, excessively tired, often blurry vision with weird light stuff going on makes me afraid to drive at times, balance is consistently very poor, still have numbness/tingling/burning in areas of body, brain fog often. I've had arthritis for years and get swollen knee and foot that turn purplely and hurt. The knee has several nodules on it that are sore and swell too. Neck pain often, numbness is increasing - I have permanent (since June) numbness in my left lips, chin and jaw area - feels like novacaine in there. Stiffness and a blush across bridge of my nose & across my cheeks that ranges from slight pink to red.... comes & goes. Sometimes I really feel like I'm dying - it's scary. Generally I feel fluish most of time and just plain miserable.... I haven't had the chance to become a grandmother yet and am wondering how I'll be able to handle that.. And to top it off since I'm bi-polar docs tend to focus on that always first and I have to really push hard to get them to see me as an intelligent person and that these things are NOT all in my head from my BP illness. I am trying to get SSDI which is a real trip - 1st time turned down of course but they said they base their criteria on whether a person can work a "Substantial" job for a 12 month period.... Well! I think my record this year speaks for itself and I know Ieft out lots...! What a trip - my credit is going to "h...........", I'll probably have to sell my house of 15 years and only place I've ever had any security whatsoever, soon cause I do not have the money to pay the property taxes, house insurance and upkeep... I'm really depressed over this... I grew up in a very dysfunctional family -moved every few months, my 1st husband committed suicide, his son - my firstborn beautiful in heart and looks child - did the same thing at 22. Nearly destroyed his siblings and me.
I admit - I am definitely dealing with strong depression now but who wouldn't!! I don't know if I've included everything but...it can certainly give you a picture.... Let me know what your symptoms and struggle with have been if you want... Sorry so long.... I gotta get to the store... check in later..