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Old 02-13-2010, 05:58 PM   #1
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Doctors have no idea what is wrong.

On and off in my life I have had health problems. None of them stayed around. Bladder, feet swelling, stomach, leg weakness, low blood pressure and, for about two years, blinding migraines. The last 11 years I have been suffering from episodes of severe weakness, pain, shortness of breath and diplopia. I was told it was Chronic Fatigue Snydrome. So I accepted that and lived with the episodes. About 3 times a year I would take medro dose packs to help me back on my feet. Then, about 3 years ago, new symptoms surfaced. Inability to keep potassium levels normal (this comes and goes) and I grew weaker. The past year was the worst. It started with a rash, followed by an episode. I was given a medro dose pack and it did not work. Then it was followed by severe diplopia and then I was given a steroid shot. The steroids now seem to bring out the syptoms more severely. Then I had an inflamation of the skin that burned and covered my whole body. Then my diaphram had contractions followed by severe leg weakness. During this time, I had one small lymphnode swell up behind my right ear. It is still there and it varies in size from day to day. During this time, neck and head pain grow more and more intense. Then, one day, the dipolpia, neck and head pain, low-grade fever, and slight loss of the use of my left hand had me on the way to the ER for the 3rd time. Before I could reach the ER another scary symptom began. I would collapse. I would be in so much pain and then I would collapse when I would try to get up. But once I would collapse I would not be able to move but all my pain would be gone (even the dipolpia) until I regained some ability to move. After the 1st collaspe (I had a few after that) I was not able to walk or stand without a great deal of help. With a walker I was able to walk once I regained some of my strength but it was with a severe tremor of my whole body (only when I would stand or walk) and I was dragging my right leg. My left eye lid also would stay closed. I also had severe blood pressure spikes and soaking sweating episodes. I was hospitalized and after many MRI's, spinal tap, CT, countless blood tests, EMG and an autonomic nerve test they could not find anything other than a low IGA, low IGG and a high IGE. I also did poorly on the exhale part of the pulmonary test (doctors tried steroids to open air way but that made me worse). Since my release I have been to the Mayo Clinic and they confirmed CFS and my stomach lining is very thin for an unknown reason and I was once again diagnosed with IBS. My IGG has gone back up but my IGA is still too low. I also was diagnosed with severe reactive hyperglycemia. The other thing they found was my ACTH level is 33. My Endo doctor thinks this is due to my chronic pain. She did check my throid, adernal glands and hormon levels with no positive results. I was sent to a immunolist and he belived I have MS markers. So he sent me to a MS specialist and he has no idea what is wrong. In the past 6 months my walking is about 80% at times. It does regress to about 25%. My weakness is still keeping me from my active life. I still get numbness in my legs or feet and in my two small fingers on each hand (at times my pinkies have a great deal of pain). I just need a name to give this condition because CFS doesn't last this long. Any ideas or even a direction to look?

 
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Old 02-16-2010, 07:39 PM   #2
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Re: Doctors have no idea what is wrong.

Have you seen a rheumotologist? I have some of the same symptoms and don't have answers. I also have multiple unusual calicifications in my brain and they don't know what the cause is My potassium level drops and then corrects itself but after I have severe body cramping like charlie horses. I also have bladder spasms, sweating, and rashes. My left arm and leg get numb and weak. I do have fibromyalgia but I have been doing great for years. These symptoms didn't begin until I was injured and ended up having back surgery.
I am still looking for answers and I wont give up.

 
Old 02-24-2010, 01:12 PM   #3
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Re: Doctors have no idea what is wrong.

I have seen two rheumotologists and one had no idea and the other said it is CFS, Fibromyalgia and myofacial pain. I was told over 10 years ago it was CFS and now things are much worse so I do not think it is CFS. I know how you feel about needing a name for this illness. I am discouraged and broke. I do not know if I will ever find the answer and I am only going to try a little longer. Good Luck.

 
Old 02-28-2010, 02:21 PM   #4
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Re: Doctors have no idea what is wrong.

Quote:
Originally Posted by sicktoolong View Post
I have seen two rheumotologists and one had no idea and the other said it is CFS, Fibromyalgia and myofacial pain. I was told over 10 years ago it was CFS and now things are much worse so I do not think it is CFS. I know how you feel about needing a name for this illness. I am discouraged and broke. I do not know if I will ever find the answer and I am only going to try a little longer. Good Luck.
hang in there...I am in a hurry right now but I want to post when I get more time later on. Would you like me to respond to you in here, or on your reply in the CFS board? Anyway, a short answer is steroids not good; this is an immune problem and using steroids to weaken the immune system only makes things worse...I have have had much similar things as you and I'd love to share with you a few things. Gotta run for now, but please tell me where you want me to post...since I have CFIDS (CFS/ME), I usually post in that area but you made reference to this post there and I do think you have CFS so let me know.

 
Old 02-28-2010, 03:28 PM   #5
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Re: Doctors have no idea what is wrong.

Hey sicktoolong, You and I have all the same symptoms/problems..

I've been sick for over two years now, (I HAVE LYME).

Last edited by Administrator; 03-01-2010 at 11:03 AM. Reason: Removed Quote. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
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