Thanks again. What throws me off are two things-the pain is ONLY from my waist to my toes (contradictory to my neck MRI) and this pain (these pains) are always moving. Standing still for more than a few seconds is impossible. Walking short distances is painful but far more exhausting. Sitting for a while hurts so I have to get up and walk. I am always tired, tired, tired if I sleep a lot or have one of my frequent no sleep nights. Going down stairs hurts more than up-ramps are killers. My eyes get blurry and after some time clear up. I itch like crazy and often wake with ugly red splotches on my arms and hands from scratching in my sleep. I lose my balance often and trip over things that I thought I had raised my foot high enough to clear it. I have also been trans-versing numbers and letters lately.
Sometimes my upper back and sides feel tight (like a too small bra) and makes me breathless.My hands don't ever hurt but don't hold things and I often miss when reaching for something. My arms never hurt but sometimes get so weak I can't lift anything. y eyes and mouth are very often very dry and I need OTC remedies. I lose words a lot, sometimes in the middle of a sentence. If I get a little too warm I go into full overheat, feel awful, and it takes a while to cool down.
There's most of it. Crazy right?

BUT blood tests show nothing, nerve tests are normal and prednisone at a mere 10 mgs fixes ALL of it.

I don't think you are crazy.

How old are you? Some diagnoses occur in different age groups. And who put you on the prednisone and what was the given reason?

I am sorry for your suffering.
ANN

Thank you Ann. I am 55. These symptoms have been on and off for many years and now are all of the time.
I was given prednisone by my primary doctor ONLY for asthma. All of the doctors I have seen seem surprised when I tell them it fixes everything for me. I have never been prescribed prednisone except a few times for asthma/bronchitis. But there are other ways...
I have done a lot of reading about it and while I understand the risks of taking it I feel the risks of a lot of what is prescribed to me for this (which don't fix all) are just as scary.
Karen

I would ask the primary care doctor if you can continue taking the 10 mg. prednisone every day if you feel it helps you. It's not going to kill you to take it for a few months if it will help you feel better (while you look for that second opinion new neurologist!) Many people with different autoimmune disorders have to take prednisone every day. Just educate yourself on the side effects. You might get a second opinion that helps you figure out what's going on...in the meantime I see no harm in staying on prednisone if it helps. Good luck.

Ami-

Have you read about polymyalgia rheumatica? It most often occurs at 50 and above and is managed w a small dose of predisone- even 5mg.

Steroids- even small doses- have major side effects. You should be under someone's care while on them. Be thee careful.

Good thing about Polymyalgia rheumatica- it may go away completely after 2-6 years.

Best to you, ANN

Levels
 

B12, Folate, Iron, D3, RBC, WBC, HGB levels??

Don't say your bloodwork is fine if you haven't checked all of these.
Feel better.

Also how about a little ccsVI aka blockage going on somewhere?

Thanks Eddie. I never heard of that before bur after checking I do fit those symptoms a little too well!
Yes I have had all those blood tests many times and they fluctuate-often wbc is too high and sometimes bilirubin is too high. Occasionally potassium drops low. And folates are too low one time and too high another. None of these occur together but jump out one at a time.
My primary, who is a woman, has told me that some doctors believe that some people run low on cortisol and I am an obvious victim but because there is no real tests to prove it she cannot prescribe prednisone often.
It has made me gain weight and raised my sugar and they both seem to have leveled off but I'd rather treat the sugar and live overweight than be skinny and lifeless. No other side effects.
There is , I have been told, arthritis in my knees and so that gets blamed for a lot of this. I was told 7 years ago my one knee needed immediate replacement but 7 years later it's still fully intact. I am able to differentiate between the bone pain and the tightening, spastic muscle pain that is so hard to live with.
You guys are great and I appreciate your time, experience and knowledge!

Just back from the primary-she says my neck is a mess and ordered an MRI of the rest of my back. She says "neuropathy" which to me is a much of a non-diagnosis as fibro and prescribed Neurontin. Can anyone tell me anything about this med? She also is testing me for Sjogren's Syndrome because my mouth and eyes get very dry. She says my extreme lethargy is from chronic pain. I feel like I am a chemical guinea pig and wish I had a real diagnosis. She says my next stop will be a neuro-skeletal specialist.
I guess maybe I don't have MS or if I do I'll never know. Maybe I am just crazy-lol.