Hi, I am 46, female and have been hoping for answers for over 20 yrs now. Tho I had a few symptoms (I did not realize were symptoms) as a child, like weakness when I chew. I became very ill around '85 and was left with many symptoms to deal with which I realized three years ago all increase or decrease with using my muscles. I am so tired of having to explain symptoms. Here is a basic 'list'.
#The more I use my muscles, the worse I get! All symptoms increase the more I do. Literally.
Tremors, hard to walk..very slow, legs have to touch down a few times to finish gait. Waddle, weakness lift arms, face pulls down on right mostly, eyelids go down-mostly right side. Lose speech, become hoarse, diffucult to breathe-especially out, a few numb toes, longer look up-eyes difficult to look up-eyelid and pull down-feel difficult to move normally especially to left, neck hard to hold head up, left hip pulls crooked and up. Weight gain, numb spot on left lip, times when pins and needles in hands and feet, Muscles pull tight in torso and fold me over if really been active. Now and then my legs totally cut out, no feeling, on the ground till they work again, usually three minutes? Memory problems, long term and short. Cognitive problems.Very heat sensitive. Heart gets worse along with everything, releived with nitro. Bladdar and bowel leak, bladdar sometimes hard to empty. Skin from jaw to collar bones will become very sensitive, along with some places on my hips an thighs. drop things, Back tight and folds me over when (trying) to walk....on and on.... gives you a picture.
My original physician in Alaska suspected MG or muscular dystrophy. The neurologist he sent me to at the time said 'mental'. This shocked him. I was tested for everything.
(I was never told anything I had going on was a symptom. Like not being able to lift my arms. This definitly hindered me. some doctors didn't let me explain anything unless it had been 'diagnosed'.)
MRI of head showed three small spots, I am told these days are age spots. Nothing diagnostic. Same as twenty years ago.
A few times, along the way, I tried to see an intern, since my liver and spleen had become so tender when it hit and thru the first year, and my liver is usually last click 'in' normal range.' Enough to flag a surgery, but not to have looked in to, I am told. Once came up positive for hepatitis, retest was not positive.
(A few years after onset, I went thru a time where I was so cold, I felt if I got any colder, i would not make it. Something would drain from (? ) my head, (tho chronic sinusitis, not at this time)it smelled awful, would wake me from a dead sleep. It would run down back of my throat and sear my stomach. It made me so sick, I would throw up. When that subsided after a few months, I went thru atleast 3 months where I smelled just awful. Severe odor coming from my body. My poor family! Ha. I had to throw away all the bedding and clothes. I did not swell quite as much after that happened. )
Well, I dared to try the doctors again 4 years ago. Alot of drama led me to a neurologist who blew raspberries in my face and wrote a report I am obcessing so much I am making myself have symptoms. (quite the opposite, I run on water trying not to have them) I demanded then to have his diagnosing " psychogenic/conversion/somatic' ruled either way. I do not believe you can diagnose that in one visit. I would accept it from a 'professional'. (there were extenuationg circumstances at that visit I have no doubt contributed to his ridiculous behavior)
So many doctors tell you what you don't have! Big deal, tell me what I have. If you think something mental, do it dignified and to help me.
On my own I have done alot of counselling and looking in to ptsd. I have benefitted alot. Never in any working with psychologists or counsellors did they ever say I was depressed or anything else.
So I did the long procedure of counselling, getting finally to a psychiatrist. The psychiatrist was very concerned at my symptoms. She commended me on the work I have done (ptsd). She ruled out psychogenic/conversion/somatic and got me in to see a neurologist in a university.
The neurologist, long story short, ruled out mental, felt it was permanant post viral general muscle dystrophy (not and official diagnosis. She gave me what I asked for, some physical therapy(which almost killed me) with someone to work with and tell me what 'was' going on. It has been so beneficial to have someone explain, it has helped me understand and make changes that benefit. He and the others there I was able to work with all said they saw MS symptoms. They could not believe I am not diagnosed. I let them know ms is ruled out.
I am on pre-disability. Have seen many, the men say mental, the women say post viral, but not a real 'diagnosis'. Things were going along ok, I was getting help for the first time, ever. I was going to be fitted for a hip brace, hoping that would help me walk easier. Sadly the ones who fit for them, will not see me. They are the all in the same group, saying mental. They said if things change, I get worse, what ever, come back. They will not see me, literally.
They represented psychogenic and all the help for my symptoms has stopped. This is just crushing to me.
Why is the psychiatrists diagnosis not accepted? And the last neurologists not either.
The hardest for me is when (I refer to psychogenic/conversion as 'mental') mental is suspected, it is considered a waste of the doctors time and the tests. 'Everything is mental'. I feel I no longer have the time or the convenience to be put on hold any longer. I am no longer willing to try another antidepressant to 'see if anything goes away'. All I do is gain weight. It is hard to lose when in this shape. Then I am asked if some of my problems are from my weight! Uugh!
Well, if you have any suggestions, I would appreciate it. I am just tired of the whole thing. I really never imagined I would still be having problems this long down the road. I am getting worse. Things that use to 'subside'to a point, do not any longer.
I have done many things along the way. Diet changes, herbs, homeopathy, kinesiology, rolfing, massage, selfhelp, creative healing, hoxy clinic, aromatherapy, Mannatech, frequencies, practically everything I came across.
Physical therapy was really ******n me, even walking from the car to the office, was more than I could handle. It has taken 5 months for the hoarseness and intensity of tremors to calm down.
I look forward to any suggestions. I would love a real diagnosis so I can get help when I need it, not handed something for anexiety.