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 remember reading about your frustrations on the lupus forum. I'm no doctor, but your symptoms seem to go beyond cfs. It's very frustrating to read that your test for PD came back positive, but the neuro doesn't want to diagnose you or try to treat your symptoms. It's obvious from what you are posting that you continue to go downhill and that your symptoms continue to get worse. I don't blame you for being depressed when you feel like you aren't getting any help. If I remember right, you don't have a lot of options regarding medical care in Ireland.

I wish I could offer more help. The only thing I can say is to please don't give up. At some point a doctor has to see how sick you are and offer some help. Hang in there.

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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!

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Colonscopy July 06 - showed ulcers.
Diagnose either UC or Crohn's!

Thank you for your reply Pia,
Yesterday doc rang to tell me that bloods showed that the thyroid replacement meds were too high.
That will explain, maybe, the last few days where I thought I'd die.
I was on a lot of neuroleptyics for far too long but have been off them at least three years before these symptoms begun. I never had tardiv dyskinesia on em or for the few years after so I doubt it is that.
they apologised for ever having me on em!!!
I do think they are 'messing' me around.
I realise that more could be wrong and it will be a long haul to find out exactly what. Did your ma have a DAT scan as a matter of interest?
Thanks Pia

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Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

Hi Ann,