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.
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?
I don't know that it explains all your symptoms but GERD jumped to my mind as I read your post. The mention of a bad cough, allergies, asthma and sleep problems without apnea especially struck me. The reflux can cause nerve irritation. Have you ever seen a gastroenterologist? Some people with GERD have no "heartburn" or specific stomach complaints.
There is a MedHelp topic over in Gastro that is long and full of people convinced that many symptoms similar to some of yours are related to a as-yet-undiagnosed problem with the vagus nerve (10th cranial nerve). It could be very interesting to many limbolanders here. Then again, since the vagus is part of the CNS is interesting to the diagnosed too.
no, you are not crazy. There is something wrong with you and now its up to the doctors to find some answers. As you already know, it often takes a lot of time and wears on the patience of the patient.
Do you think it is migraines? Do you think it could be psychosomatic? You sound well versed enough to be open to both of those possibilities. If you don't believe these are the answers, then keep looking.
There is nothing wrong with asking for a second opinion. A doctor who is confident in his/her skills and relationship with the patient will not be threatened or angered by such a decision on your part.
Good luck with the next neuro appt - they keep doing the same tests over and over (such as the MRI) to see what new evidence might come to the surface. We do know that the technology available for imaging doesn't see everything that is there.
Latw thank you for the suggestion about too much information. After the last visit I am keeping quiet about things that come up. Only if they are so serious a hospital is required will I mention anything.
Twopack, Thanks for the suggestion, I'll go read up on the GERD.
LuLu, thanks for the support and encouragement. Yes, I am wondering if it is psychosomatic and I am going to try the antidepressant the doctor prescribed, to see if that helps. I would feel bad if I have occupied everyone's time, tests, etc. on a psychosomatic problem, especially when I think of friends that have serious diseases.
Please don't forget that depression is a very real disease process - I'm not saying that is what is wrong but if it is, it also can be treated. Depression and MS go pretty much hand in hand, so I speak from experience with this one.
The symptoms you describe here sound so much more than something just in your head - weill actually they sound very neurological and could be in your head, but in a different way.
My son use to take imipramine, and it is a tricyclic antidepressant, mainly perscribed for depression and bed wetting (usually children), it also has off label uses such as anxiety, eating disorders and panic disorders. SSRI and tricyclic antidepressants are also commonly perscribed for migraine and pain, though there are still very conflicting research to the benefits vs plecebo.
I seem to keep wondering why someone is on a drug and experience well documented side effects, and yet the drug doesnt seem to get thought of as the possible culpret. I cant say if it really is part of the problem or not but thought you might find the side affects listed as very familiar:
weakness or tiredness
excitement or anxiety
skin more sensitive to sunlight than usual
changes in appetite or weight
changes in sex drive or ability
Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:
jaw, neck, and back muscle spasms
slow or difficult speech
uncontrollable shaking of a part of the body
fever, sore throat, or other signs of infection
difficulty breathing or swallowing
yellowing of the skin or eyes
I find it interesting that even on upto 5 times a day, your still being perscribed yet another drug for depression, even if imipramine is for something else, theoretically you should by all acounts be getting the additional benefits because its main use is for depression.
One thing i do know for sure and that is a drug that targets to improve can have the opposite effect, not always but more common than you'd think. My little boy started taking imipramine when he was 4, (panic attacks) he developed a tremor in his right hand and it was just something else to deal with, compared to one of the others he'd tried it was nothing, same class of drugs but it made him so hyperactive it was crazy, he was also having more panic attacks than he'd ever had, which was why he was taking the drug in the first place lol.
So after all that, what do i think, well i dont think your crazy and even if there was something going on with your mental health (who wouldn't be depressed with what your dealing with lol) it doesn't on its own explain everything. Fresh eyes and ideas might not be a good idea, sometimes patients get type cast and all sx that dont fit the cast get dismissed or ignored.
Thank you for the information. I, too am wondering why I am getting another drug for depression when the imiprimine is for depression. I've just given up on trying to find a physical reason for the pain and exhaustion and so, just going to do what the doctors say, they could be right...I'm thinking if they are, then the pain and exhaustion will go away if I go on these meds...?
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