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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 8/15/2007 11:31 AM (GMT -7)   
He is keeping me on the stalevo, a PD drug but things I have two conditions, one being Dystonia of some kind and also a muscle wasting/myopathy causing the complete weakening. He doesnt know whether either are fast developing or slow lbut I do know that some dystonias are fatal.
I am to have a muscle biopsy and also an EEG and I had a raft of bloods when I was in the hospital.
He is referring me to rehab for whatever they have to offer re counselling about chronic illnesses and NOT a shrink, his dad was a shrink.
He said that the conditions could have been caused by the psychothropic drugs I was on for years and PD on top of both the above has not been ruled out and basically nothing defo ruled in but says he and another neuro are edging towards some kind of diagnosis but with anything neuro it can be very complicated and he says I AM complicated as the symptoms seem to change like the wind and I agree. He is going to try me on a dystonia patch which he says is not as effective as the drugs but safer.
xxAnn
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


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 8/15/2007 12:27 PM (GMT -7)   
Oh my. Sounds like your doc is doing the best he can to help you out. That's so frustrating to not have them nail down a specific diagnosis. Hang in there. I hope they will come up with something more concrete soon.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/15/2007 12:31 PM (GMT -7)   
So Sorry you are dealing with so much! I am glad you have a Dr that is trying to figure out what is going on, at least he does not give up.

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 8/15/2007 11:44 PM (GMT -7)   
Love and prayers Ann....glad someone is finally taking your symptoms seriously...hope he keeps digging until he hits it on the nail....meantime, good luck with this new treatment. keep up your spirits....know that we are thinking and praying for you to have better health soon.
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 8/16/2007 1:11 AM (GMT -7)   
Thank you very much for being so considerate and so kind. All of ye are going through equal hell with various complaints. I donno, as I probably said before, there will be a queue at the pearly gates whilst I question first Peter and then God as to why we were made to suffer in this way.
I AM very depressed and my poor twin who HAS Parkinsons is getting the brunt of it. I try to apologise all the time and tell her I am so very tired and ill I dont mean it. She also has been great these past few days helping me put the finishing touches to wallpapering bedroom as the diy is SO expensive and I didnt realise how much I took on. I can't afford what the painter/decorators are charging and the family never even offered to pitch in and most of them are more than wealthy.
I wont be grumpy, its nearly all done now and my new bedroom looks just fab.
It used to be my painting studio.
xx to all with thanks
Ann
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


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/16/2007 5:42 PM (GMT -7)   
Hi Ann So glad you kept trying and are getting some answers. Wonderful your twin is doing your bedroom up will put a little cheer in you I am sure. The therapy sounds great too. Say hi to your twin and keep well.I know that sometimes a person can be a little tired at times and hope your twin is doing good as well. lol gail

Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 8/16/2007 11:38 PM (GMT -7)   
Ann, Do you still Paint?

I find it wonderfully therapeutic.

Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 8/17/2007 3:31 AM (GMT -7)   
just painted the stairwell - the one I fell down and coshed me head against side wall last week and ended in hosp for observation!
nope, dont paint anymore, its gone for the moment, cant sit still or stand for long periods, hope to get back to it with all sincerity, at present the diy is helping keeping the depression at bay and a false belief that all might be right in the end!
xxAnn
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


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/17/2007 3:55 AM (GMT -7)   
I do wish you all the best in this new TX and I am so sorry for all you have and are going thru

Keep us posted plz

LYN
    Contribute today to support Healing Well Forums...Donate @
 
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