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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 3/19/2008 3:30 PM (GMT -7)   
Need a careful PLAN for this major major trip - in the sense I hope I get a diagnosis after three years of hell.
Got all the pics as advised here.
Will ask twin to take a video of my walking, chorea, dystonia etc.
Symptoms hardly change but there seems alot of em.
|Are there any specific questions I should ask the doc.
It is a multidisciplinary unit, cos I have a muscle wasting disorder who could I ask to see, and even if none of ye have IF YOU had a choice of specialist to be brought on board in your situation on the autoimmune team who would it be.
Pain management, yes. coping skills yes, fatigue management yes, meds yes, nuitrition, yes,
exercise yes.
neuro yes, physio regime yes. executive skills testing (bout how much the brain function loss I have).
See nothing here in Ireland. If I see all these people will I ever get back this year?
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


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 3/19/2008 3:34 PM (GMT -7)   
I would assume a rhuemotologist is heading the team-that would be my choice. And a neurologist which seems to already be listed. I think you have every thing covered.

Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 3/19/2008 3:38 PM (GMT -7)   
oh yeh, bundle of rheumys at the unit, great! They are a rare bred here.
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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/19/2008 7:52 PM (GMT -7)   
I would ask for an allergist as well and maybe a GI specialist. I am so glad you are finally going to be able to go. It is so very important, I have been wondering when you were going and if you had heard anything else on your trip.

I will keep you in my thoughts even if I am unable to post in the coming weeks.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 3/20/2008 1:11 AM (GMT -7)   
sorry redrose, er, what is a GI specialist?
Everything going ok with you and the expectant baby?
A
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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/20/2008 12:58 PM (GMT -7)   
gastro intestinal sorry, forgot that the short form may be different over there

As for baby and me, baby is great. I have pre-eclampsia and will be delivering early. How early depends on if they can get my blood pressure under control- right now they are not doing so good with that. We know I will likely end up in the hospital at some point and also that the baby will be born next month unless by some miracle the pre-eclampsia stops raising my blood pressure.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 3/20/2008 1:22 PM (GMT -7)   
Thanks redrose,
Take it easy, anxiety raises blood pressure!!! you and babe will be fine.
I'd love to have had kiddies. Couldnt never got a man. Wouldnt have had one unless by divine intervention and that seemed rather unlikely.
God love me, I wanted six!!! If i had one it would have been lucky to have survived me alive.
i was a troubled young woman but I think a child would have brought sense rather sharp and my past experiences would have made me want to make sure my child didnt go through the same.
My baby now is Ana a chihuahua, as someone said "a rotwieler that has been through the hot wash" She is white.
Getting a second when I come back from London SO excited.
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/20/2008 3:36 PM (GMT -7)   

Hi Ann, I'm so glad you are finally getting some help. If you get good results will you be moving to London to be closer to the doctors? I'm not sure how far you have to travel. I don't pretend to know how your health care services work over there.

I would diffinently try to get help with physical therapy givingthe muscle problems you have..

I'm getting all excited for you and I just pray it all goes well. I do have a son but how he survived me is anyone guess. He lives 1000 miles away now so like you I live with my dog!

love ya

carol


God Bless
Lupus like symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4.,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 

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