Hi !
I am finally giving my GPs recommendation that everything that I have is due to migraine (that's what they consider my face pain is), aging, anxiety and/or thinking too much about myself. I don't know what else to do, I really think he cares and feel he is a good physician. My husband and I were going to try to go to a face pain specialist at Duke but my Dr. doesn't thinks I should just try the antidepressant along with the meds the neurologist is giving me. Every time I do a search of my symptoms MS keeps coming up but he and the Neurologist say I don't have it. He can't however explain my constant fatigue and that does "bother" him.
A lot of times when I've searched the internet, MS has come up. They told me it is not MS. I don't believe my constant fatigue and face pain are from anxiety. I am only 55, and proper weight for my height, married with grown children.
If someone here has had a similar experience, I'd really appreciate knowing if they got a diagnosis and if it was MS or something else.
Symptoms
2 years face pain on right side, not trigeminal neuralgia or sinus, I take 6 to 12 ibuprophen a day to relieve it.
Fall asleep and wake up in 2 hours, now take xanax to get some sleep. Sleep study did not show apnea
Neck stiffness and pain and upper back pain, some arthritis was the diagnosis
Last year I had a rapid weight loss without trying, of 20 pounds, a lot for a 5'2" person. That has stabilized.
Have essential tremor since I was a teen. Now I have the feeling that either the whole room is shaking or the blood is pulsing through my trunk and yet there is no visible tremor in my body.
3 years ago I developed a cough, which was so bad I could hardly speak, diagnosed with allergies and asthma, take shots twice a month and am better but still cough if I talk or laugh too much, if I drink too cold water, get too hot or cold, etc.
I have tingling and pins and needles in my lower arms/hands and legs/feet. Sometimes my palms feel like they're on fire.
New 3 weeks ago, the back of my upper calf aches when I try to stand or walk, it seems to get better after I move around
At times, not right now, I have forgotten where I am or where I am going.
I am pushing the wrong numbers on the telephone
My memory is so bad, I can hardly recall stuff. (the upside is I forget things that normally used to upset me :)
I've been to the ENT, 2 cat scan, nothing, except sinus infections on the opposite side, last year.
Have been on all sorts of strong antibiotics
Have been on all sorts of treatments for migraine, topiramate, carbazipine, gabapentine, antidepressants, not one thing has helped one iota
I have osteopenia and am supposed to take Boniva but after the tremors started, I wanted to wait to get off the other meds before adding something new.
MRA of neck showed nothing abnormal.
had hysterectomy and bladder tacking last year which has helped with the bladder problem
Now have hot flashes off and on.
Cannot stand it when it's too warm, end up stripping off my sweater
Yet, I'm often freezing cold for no reason.
I get dizzy if I turn my head fast, or turn around fast
In the shower or tub I sometimes see stars
My white blood count is below normal. When I asked about this the doctor said my wbc count was always low but I can see that it was never below normal. Also the MPV count was below normal and I never had that show up before either.
My personality has changed, I panic or get angry if presented with a new task or additional responsibility, however, this has lightened up a little bit because of the loss of memory. I can't remember if I was asked to do this before and didn't or if it's a new task, so I just go on.
First brain mri showed "patchy area of increased t2 signal change within the left pons extending to the pontomedullary junction". Considerations were chronic small vessel ischemic change, prior osmotic myelinolysis or demylenating disease. Also, "minimal white matter changes elsewhere" which may represent chronic microangiopathic disease, gliosis or demylenating lesions. My nerologist thought this mri was a ghost or abstract and disregarded. He said that I could have another in 4 months if I wanted to just to be sure. I did in November and the second MRI said "sulci may be borderline prominent for age". (I'm 55 female). "Vague scattered punctate areas of increased signal in the periventricular and subcortical white matter of both hemispheres on T2 weighted and flair images, but also increased signal in the pons, more ventrically and left of center and both medullary pyramids. There are no abnormal areas of contrast enhancement." This was interpreted as "abnormal due to probable gliosis in the pons and medullary pyramids, minimally in the periventricular and subcortical white matter with no evidence of acuity. "The current study appears to be essentially unchanged" from the last.
The trunk tremors started in the beginning of January and they thought it was the gabapentin. Took me off it and I still have it. Now he put me on imipramine which I am supposed to go up to 5 pills a day for the face pain. And, my GP is putting me on an antidepressant celexa (? I haven't picked it up yet)
This is all within the last few years. Prior to this 7 years ago, I had and still have problems with my right hip, which they diagnosed first as bursitis. I got used to this pain and ignore it most of the time but it's still there. It seemed like they really couldn't figure out what it was so they chalked it up to muscle weakening and scoliosis. About the same time as the hip, I had whooshing like someone shaking a huge sheet of metal and pumping in my ears, mostly my right ear. They had trouble diagnosing this as well, finally telling me it was Meniere's. Now that has pretty much gone away but it went away slowly over about 5 years and still comes back but only very rarely.
If anyone has a clue, could you let me know what to do. I hate to disrespect my doctor by going some place else. I am due to see the neurologist again in 2 weeks and I'm due for a complete physical the end of March. I am also due for another MRI in May, I don't know why. Help
Is this all too much? Am I crazy ?
If anyone has had a similar experience, please tell me if you had a diagnosis or not?
Thank you,
jlcw