query ME/CFS diagnosis

july 05 diagnosed with Me/CFS but now two years on I am using a rollator frame, stick or wheelchair when trying to mobilize myself. Cognitive skills all gone. I am shattered tired all the time but cannot sleep a wink. I take buckets of 'sleepers' to no effect. I have neurological symptoms, jerky movement and constant jerking of toes and left hand when resting. My leg calf muscles are agony even after a littleThe lower legs seem very week and when standing I clamp knees together to keep me steady. My legs dont do what I ask them to and I have a stiff, unsteady gait.
I tested positive on the Dat Scan for Parkinsons but my neuro says I do NOT have parkinsons so why do this test and why refute its findings which say the test result is consistant with early parkinsons.
Twin diagnosed with parkinsons just before christmas and she diagnosed with ME/CFS years ago and now they feel it could have been PD all along but when I went to her neuro he says my sympoms are not typical.
My body seems 'wired' neurologically as if I have brain damage. I can hardly keep eyes open but the 'jiggers' and the unbelievable urge to move and not be still is making it impossible to rest.
I am frazzled. Also in hellish pain and I have crohns disease too and am severely deaf. I am receiving no pain management nor management for the awful nausea. Just getting worse and worse and donno what to do.
My CK levels are high and getting higher which is indicative of Neuromuscular disorder but no one seems willing to do much for me or even start any management plans. I can hardly walk a few hundred yards unassisted and I am left like this for the past two and a half years.
Pain wracks my body, frm neck down my spine and my wrists, back of hands and legs.
I have an insatiable need to drink water at times which is completely bizarre. Tested for diabetes but dont have that.
Any suggestions very welcome at this point. I am very, very depressed. I have had to give up my studio and ceased working on my book. My mind too scrambled and confused to write and I have no strenght or energy to paint.
xx Ann

Ann,

I am so sorry that you are going through all this. I wish from the very bottom of my heart that I could help you in some way. I have multiple symptoms as well, but not nearly as severe as you. I do however have a few suggestions. I don't know if they have been tried or not, so bare with me.

I have a friend with MS, she is on meds for the jerking you describe. She was having terrible problems and feels alot better after using the baclofen tablets, although I think she is using a pump at night now.

My mom was having alot of Parkinsons symptoms years ago - she tested positive as well, but it turned out that she was on meds for her bipolar disease and that was the cause of all her symptoms. Have you looked into any strange side effects of meds you might be on? It might be the cause or maybe making things worse?

As far as the pain and nausea go, you should demand to be taken care of. Those two things alone can cause a person to lose it! I think that if you get some relief with some of your symptoms you might be able to get some strength back at least.

As far as the water thing goes, this could be caused by diabetes inspidius. This is NOT the same thing as diabetes and there are many causes. You can find alot more on the subject here http://www.diabetesinsipidus.org/. In short it is often caused by your pituary gland.

I pray this may be of help in some way. I really do feel for you and I can relate so to the pain of not knowing!

Good Luck!

Hi Ann,

I wish I could answer your question, but my mom has passed away and to be honest I dont remember what kind of tests they ran. She was on meds, so they were pretty sure she had the parkinsons. She would sit at the dinner table and all of a sudden she would start to tip over. Her hands would shake and you could hear how she was struggling to talk. When they took her off the meds for the parkinson, and changed her meds for the bipolar disease, she was a different person.

Glad to hear you have got some relief.