A great deal of your symptoms sure sound like Fibromyalgia. I have it along with being hypothyroid. When I have a bad flare up, I feel like I have the flu - very achey all over. Certain spots tender to the touch. Would go back to rhumetologist. Would also start back on the Elavil. I know you said that it didn't help after a certain amount of time, but it's one of those meds that you have to play with in order to get any benefit - of course, there is always the possiblity that this med is not for you. I take Elavil and for the most part, it helps on a daily basis - though it will not keep flare ups away. I find that the more stress I ahve in my life, the more frequent I ahve bad flare ups. Have you had your thyroid tested as well? Have you had an EEG to check for possible seizure activity? Just trying to throw out some stuff here - I am certainly not a doctor, but have had to be VERY PROACTIVE in my medical care. Been dealing with lots of different issues over the past few years - and most recent, found out I have epilepsy (have partial seizures) and on this past Monday, had biopsy on my thyroid to check out a couple of nodules. I hope that maybe I have given you some stuff to look at. I wish you the best in finding your answers,
I am new to this and was reading your post. I have been (sick) I guess you could say for 1 year now. I thought I had MG or MS. I have been to so many Dr.'s It's not even funny. I just found out that I have perinious anemia finally. I don't know if this will help you or not but it's just a blood test. I am 37 years old and my grandmother has more energy then me! I started getting b-12 injections and I could say I feel a little better. The Dr. say it will take some time. My Methylmalonic Acid is very very high so that let them know that I have this. Look it up. The symtoms are tingling in arms, legs, fatique, problems with tongue, dizziness etc. I hope this will help you. Maybe you could ask your doctor to test you. I hope all gets better. I have numbness in my arms and legs and all I want to do is sleep. Good Luck.
I, too, was put on b12 injections (all the same symptoms)
I have been on for several months and lately have given myself even more shots, on a daily basis, and still there is no change. It cannot take this long, can it. I had my b12 tested (blood) after a few months treatment of b12 injections with practically no change. 243 was the 1st test, 3 months later it was 248......even my neurologist was surprised (over the phone) Can't find a dr who gives a $#@^ so I am just left guessing. Anyone know anything about not really responding to b12 ?
I've been sick like you have been for the past month, for more than 10 years, and they can't figure out a thing. Just that's it's likely more than one problem that are all overlapping and making it hard to diagnose any one of them. I have a lot of screwy things in my bloodwork, and no one knows what it mean. Currently though, I have moved and have a fine new crop of doctors who actually seem interested in figuring it out. Recently they sent me to an endocrinologist, so we shall see. The most commonly asked question recently is: have you seen a neurologist yet? I guess I just don't want to find out I have something that's just going to get worse.
My old rheumatoid doctor said that if it was fibromyalgia, that all the bloodwork would be normal, all the time, and medications generally would not do much. Plus, they tried me on prednisone, which worked wonderfully as much as I hate the idea of it, and a neurologist tried me on Provigil for a sleeping disorder (they use it to treat a bunch of things), and it worked great. So, that was all evidence that something was definitely wrong.
The B-12 should work immediately, if your body needs it.
The thymus gland shrinks with age, unless its got one of those thymus diseases.
My mom has joked recently about eating too much fish and seafood and tuna fish salad, and mercury poisoning. So, I quit eating it, got better for awhile in some respects, but I think it was a fluke.
I also tried a higher protein diet and that worked really well for awhile, but I felt like I was eating all the time and I hate eating that much food. I have eaten a tragically healthy diet for years too and I'm still ill.
I'll post back if I find anything out.
I'm sick of the weak muscles and joint problems and dropping things. I'm only 35 and feel like I'm 85. I feel like I'm fighting a losing battle and I'm especially sick of doctors. What's the point of medical school if no one can figure anything out that isn't superficially obvious? Ms. B, your muscles appear to be weak. I might do better going to a witchdoctor.
About 4 months ago I was feeling great with just an occasional tingling below my left shoulder blade. I than had what felt like a heart attack but was checked out and all they found was low potassium. Since than the burning sensation in my upper back spread to my shoulders and arms. my legs and arms feel like I have been lifting weights and are just exausted. I have recently developed in the last 3 weeks, for lack of a better term, dizzyness. It feels like medicine head from takiig cold medication except its ongoing, stronger and feels like its all over my body. My eyes have no problem focusing but both symptoms are getting worse. My blood suger is fine and my blood pressure is perfect. I dont "feel" anxious but who really ever knows. I do have IBS. Doc said Fibromyalgia but I dont have any sore points to the touch. Havent had a weight gain or loss, could it be a thyroid problem?
I am new to this forum and was just reading through some of the posts, which is why this is posted so long after yours.
I have a disease called Mixed Connective Tissue Disease, so named because it has symptoms of several diseases that are mixed or "overlap" such as lupus, scleroderma, polymyositis and rheumatoid arthritis. It is an autoimmune disease as are these others, as well as MS. I am not familiar with MG or ALS.
Some of the symptoms of MCTD are fatigue, muscle weakness, joint pain, joint swelling, swollen fingers, mild fever, and Raynaud's phenomenon (blood vessel spasms that interrupt blood flow to the fingers, ears, nose and toes.) Also many of the symptoms of fibromyalgia, which I also have. I don't have all of these symptoms--every person is different---but I do have extreme fatigue, inability to concentrate, memory loss, muscle weakness and soreness--anywhere you touch me feels like you are touching a bruise--depression, headaches and backaches, and dermatitis problems with my scalp and hands. The MCTD started with Raynaud's phenomenon (almost lost the ends of all my fingers), which put me in the hospital where I went into respiratory distress with a rare type of pneumonia (called BOOP--no, it's not a joke--it's Bronchiolitis Obliterating Organizing Pneumonia.) I also have Antiphospholipid Antibodies in my blood, which caused the blood clots and resulting Raynaud's.
Fortunately I was in an excellent teaching hospital (even though it is two hours drive away) and had teams of doctors/specialists working with me. They told me they didn't know, but continued to pursue it with tests and research. After weeks, they diagnosed the MCTD. I was in the hospital or rehab facility for three and a half months, finally came home with a walker and on oxygen. I am still under the care of the specialists there in rheumatology, pulmonary and dermatology. I have absolutely no energy or stamina, am unable to do simple housework or cook a meal. If I have a day with any activities such as local doctor's visits, going to the bank or post office, etc., I am thoroughly exhausted and totally wiped out the next day.
MCTD is very difficult to diagnose because it mimics so many other diseases. I understand they now have a blood test to determine whether you have a certain antibody in your blood that indicates MCTD. The presence of this antibody--called U1-RNP--can confirm your doctor's suspicions. Rheumatology is who you would see since this is an autoimmune disease.
Anyway, this may not have anything to do with your disorder, I just thought it might give you something to think about, to research and talk to your doctor about. You can read more about MCTD at MayoClinic.com and merck.com as well as WebMD.com.
Good luck. Let us know what you find out.
Hugs and Blessings.
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