Easter/Sinemet

Easter 'bombed' in more ways than one. Too sick to enjoy and only ate a tiny bit and excused myself for bed.
Have lost 14lbs in weight. I feel SO sick I cannot go on like this.
My calf muscles and palms of hand are agony and on fire.
Jerking of hands and feet still the same, dystonia on waking still pretty much the same maybe not quite as bad but improvement would only be slight.
Walking shows the most improvement, the legs have losened up a bit but they are incredibly weak and I am just exhausted with all this.
Quality of life has gone below zero now and I am a drain on my twin who has a defo for Parkinsons.
I am constantly 'pill rolling' with my left hand which I see from a book is a classic of PD but the book also say that it can take five years to diagnose Parkinsons.
Surely PD doesnt make you ThIS sick too!?
would reallyk, really appreciate any suggestions or ideas that anyone who reads this might offer, I am scrabling for the grain of sand.
xxann

nope, she is in a different country!!!
xann

Hi Ann,

I know your sister is in another country, I thought I read something that she was coming over soon to see you, must have missread something....Sorry. I just Hope you get things sorted out soon and you start to feel better.  ((((Hugs))))   Take Care
God Bless

Post Edited (Strengthenme) : 4/9/2007 2:03:56 PM (GMT-6)

Ann, I am heart sick to read your post - but I hear you loud and clear.     I was first diagnosed with Parkinson’s disease in early 2005 at the age of 48 and began to progress rapidly.   I noticed some odd presentations, problems with blood pressure, temperature regulation, sweatiing, flushing, urinary incontinence, PD meds not effective at they use to be at the beginning, assorted non-traditional muscle spasms and aches dystonia, neuropathic pain,, visual problems, taste disturbances, chronic fatigue, additional adnormal movement above and beyond tremors.  For many, they do not respond as well to their PD medications and constantly need higher and higher doses over a short period of time.    I was rediagnosed with an atypical form of Parkinson’s Plus called (MSA) Multiple System Atrophy.   . Unfortunately, most people do not want to discuss this situation so you rarely see it mentioned on posting or discussions.   Many atypical PD patients or MSA patients also have odd medical histories – not all.   Like bowel problems, thyroid issues, hearing difficutlies etc. in their past. Good luck.   If you diagnosis do not make sense, press on for answers.   It took me awhile, as non-traditional Parkinson’s syndromes are rarely discussed.   However, in actuality, one out of ten Parkinson's patients receive a final diagnosis of atypical PD after death.   MSA and a whole list of alphabet soup non-traditional atypical PD's usually receive a final dx at autopsy.   Until then, we are defined as either probable or possible dx's. I finally had to go to a major teaching institute that had nationally known PD expert to receive an accurate dx.   Most neurologists just say that we have an "unusual" PD presentation and try a throw everything against the wall and see what sticks approach to treatment.   You can do better then that.

Ann, I am sorry you are feeling so terrible.  I hope you can get some better answers soon.

My Spouse had many of your same feelings before he was correctly dx w/MSA.  He did not respond to Sinemet and more, and more RX were added, to no avail.  He was reevaluated after he had terrible blackouts and fractured his neck. His meds have been totally changed and although his MSA is rapidly progressing, he "feels" better on most days.  I agree with Stella that good info. is very hard to come by and the weight loss is a hard one combat. 

Ann,Do talk to the neuro.You mentioned that sinemet helped your walking.This points towards PD,and not M.S.A.Wish you the best.Ed

Yep, sinemet is helping the walking, it isnt so 'spastic' but is helping little else, the jerking etc. My walking is difficult as I seem to be very, very weak and find it difficult in that regard.
I am still only on two 10mg a day and am to upp it to 3 10mg a day for a month.
I wish the neuro would talk to me for I can be very florid and dramatic in my thinking and who wouldnt in this situation. Of course I am thinking the worse, but if the guy won't engage with me what can I do?
Had a small nerve conduction test. Hands ok feet bombed a bit on the heat and the vibration though, neither of which I really felt.
Thought the 'gizmo' she used for that 'out of the ark' to tell ye the truth.
She said it was badly designed, am wondering is that a euphenism (scuse spelling) for 'its ancient!!!
xAnn