final diagnosis

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 12/13/2008 12:55 PM (GMT -7)   
Was back at the Lupus Unit in London UK, the director and the doctor seeing me says I have sjogrens and not Lupus.
I am to find a rheumy in Ireland, well that will be difficult! I am relieved cos the travelling is killing me anyway.
He said that the muscle wasting could be due to hypothyroidism but I found some research on Rubella and late manifestations which cause muscle wasting. So jury out on that at present.
Am changing car to van to accommodate a mobility scooter.
My neuro cognitive tests came back and they are - awful and indicate a neuro degenerative process, well, it didnt take rocket science to know that actually.
I am nursing an absess on my tooth but what the dentist did on thurs hasnt helped. She lanced it and it seems worse. She wants me with a front tooth for Christmas.
Still throwing wobblers and tantrums but the Director at the Lupus unit says thats power for the course with all these autoimmune stuff going on.
Went to a large shopping mall and didnt know what I was doing, just walking up and down with my rollator, I saw yet I didnt see, if you understand. In the end I decided that I had 'lost the plot' and had better go home to bed.
I fell down the stairs AGAIN, or rather slipped down but did a bad injury to knee. Stairs are illegally too narrow but this is social housing for you.
I do have a chair lift but it is broken.
I kinda bumped bottom down!!!! Very painful on a jarred shoulder and arms which tried to stop the cascade of flesh bumping down and down!
xxto all
Ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, Chronic Muscle Myopaythy 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/13/2008 2:49 PM (GMT -7)   
Ann, I am so sorry. You deserve decent housing. I know what government housing is like over here, and it really makes me mad. I am glad you finally got a diagnosis. I really hope they figure something out on your muscular issues it would be nice if they could be at minimum stopped but reversed would be even better.
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, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/13/2008 3:13 PM (GMT -7)   
Hi Ann,

I too am happy you finally got a diagnosis, perhaps they can get you on the proper meds and you will start feeling better soon. You just never know with autoimmune diseases as I'm sure you already know, one day they'll tell you have one thing and the next it could be something totally different.
I was originally diagnosed with Lupus in 1997, in 2001 I was doing so poorly my husband insisted I go to Mayo Clinic for another opinion (mind you I had already had several), he felt there were the best there was. The doctor at Mayo said I did not have Lupus, but rather Fibromyalgia, took me off all my Lupus meds and also started me on thyroid meds. For awhile I did pretty good, I thought, wow, they must be right, well that did last long, I hit a wall and how. So, now I've learned to take life one day at a time.

What part of Ireland to live in? My husband I traveled most of Ireland a few years back. Both our ancestory is Irish. It is an absolutely beautiful country. We flew into London, took a train through Wales and the boat over to Dublin from there, we flew out of Dublin on the way home. How do you travel to London when you go there for medical reasons? I'm sure it does become very tiring for you to have to travel to the UK, I travel 3hrs away to my doctor and that is enough for me.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 12/13/2008 3:30 PM (GMT -7)   
Thanks to you both for your responses.
Yes, Redrose, the knee is killing me now! My flat is fab despite the state of its major structure as I have made it my own and a real palace I have to say. The stairs are illegal and should be a foot length by architectural standards but these were built in the 1800's for the slum dwellers who were riddled with cholera and typoid etc, people who built up this town for the wealthy and now being squeezed out - by the wealthy.
Of the muscle wasting which I looked up last night, if it is due to thyroid it can be reversible, and another homone is mentioned called T3 needing to be added but no one has mentioned that to me.
I left a note in an eminent endocrinologist locally, but he told me my xgp was managing my thyroid well, but I want to see him again.
Muscle wasting can be caused by Rubella or Lupus but I am not supposed to have lupus and no rheumy have said it is due to it or sjogrens.
I am just amazed that as soon as I was post menopause all these things kicked in in a relatively short space of time, the neuro stuff, the autoimmune stuff and the muscle wasting stuff. I do know that after my last exhibition in o5 I crashed and was very sick and wonder did I get a viral infection that kick started it all off.
Melissa, if you travelled to Dublin by boat, did you come into Dun Laoghaire or Dublin Port? Or rosslare? I live in the coastal town of Dun Laoghaire, an amazingly beautiful sea coast and now that I can drive I take full advantage of going around the east coast here with my chihuahuas.
I love the sea, but with sjoggies, the glare and sun rebounding doesnt love me!
xx for now,
Ann smilewinkgrin
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Chronic Muscle Myopaythy 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/13/2008 5:28 PM (GMT -7)   
Ann,
So sorry about all you've gone through! I wish there was something I could do to help you! Do you have any family near you? Take care girl. Blessings, Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/14/2008 1:18 PM (GMT -7)   
Ann, now what are you doing falling down stairs???  You probably made Ana Chi and Maggie May very upset with you!  I can hear the barking through my computer..... LOL.
 
So Sjogrens and not Lupus eh.... Hmmmm.  What do you think of that diagnosis?  I'm just skeptical because of all the crap you've endured with these doctors.  I have to say though, that your posts seem to be more positive in nature.  Are you feeling better overall? I sure hope so.
 
Well, keep sending me your pictures!  I always enjoy looking at what you have created!
 
Hugs to you my friend!!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/14/2008 4:31 PM (GMT -7)   
Hi Ann,

Honestly It's been awhile so I'm not a hundred percent sure, but I believe it was Dun Laoghaire. I was very impressed by the scenary in Ireland, it was much more impressive than anything we see on tv in my opinion. That said, since you have changed to the Euro it is also extremely expensive. The country has grown quite a bit as a result of the Euro, but unfortunately I don't think the roads have quite caught up with the growth. We rented a car and drove around the country for a couple of weeks, some of the highways are much need of repair and revamping to keep up with the growth in traffic.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 5:17 AM (GMT -7)
There are a total of 2,733,417 posts in 301,117 threads.
View Active Threads


Who's Online
This forum has 151256 registered members. Please welcome our newest member, Monkeyjungle.
246 Guest(s), 4 Registered Member(s) are currently online.  Details
sheepguy, tickbite666, Andrina, fightUC


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer