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Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 9/5/2007 10:31 PM (GMT -7)   
WELL - diagnosis has finally come, of sorts. I saw THE TOP RHEUMY in the UK with credentials and accolades to wallpaper a room! I donno how, but I did. I rang the Lupus centre in London and asked to go over again and try the Lupus line. My life had become so unberable. I took the pics with me - a fab idea from someone here and he kept saying "yes, I understand" repeatedly.
Dx Sjogren's and Sticky Blood which I was told can cause chorea and hand twisting and sudden jerky movements etc. All my symptoms seemed to fit and he is convincded. His Sticky Blood is called Hughes Syndrome AFTER him who discovered it.
I am to start as soon as poss injecting myself with heparin every day for three weeks. And start drops for the gritty eyes.
The chorea is a rare side effect of Sticky Blood.
He did notice the muscle wasting which is now quite bad and I am more and more in a wheelchair and very weak and I asked him would I be come more confined to the wheelchair and he responded that, no he is convinced that it could be better than this.
He had no suggestion for the muscle wasting nor the flares of violent periods of going very, very hot and at same time very pale in the face.
He noted the memory which is crap and it seems to be part of SS
So thats it basically.
Every muscle aches like hell,especially the hands.
Back last night and tis morning my twin and I are having our usual 'snug in' she comes here now with a cuppa tea for both and joing this 'snug in' is my new dog a chihuahua who twin believes is NOT a dog but a very spoilt child.
She 'escaped' while I was away and mags said she shot off like a bat from hell and that she wasnt much the better for it. She disappeared and soon later found her on the door step.
She told me her parki went awol with the hand tremor tremoring like the clappers and the knees weak and wobbly.
I, in an Anglican English Priory, sitting in the 'cloisters' laughed my guts out! Poor twin, it was a huge responsibily and when I walked in the door she announced "there, there your dogs, a present for you, they're yours now, my job is done. and gave em back with mighty relief and now I have as reading matter a book on dog training as my new chi is piddling everywhere and we have to practically go down on hands and knees to find the source of a whiff of either pee or poo.
She is cute though.
all the best,,
Twin has rolled over and said "cute, wicked, wicked!" now Im gonna roll over too.
I'm dead.
I would love if a good member of this forum site could paste to the crohns site, sorry for asking I simply donno how to do it
xx 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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/6/2007 8:00 AM (GMT -7)   
Hello Ann,

To paste . . . . highlight or select the text you'd like to use. Select Ctrl+c and then go to the Chrons forum and start your new topic, when you are ready to insert the text you've copied from here, put your curser in the right spot and select Ctrl+v and viola!! You've copied and pasted!!

Sounds like you've had a very rough time . . . welcome to the Lupus forum. Tell us your doctor's name as there are a couple of world renowned Lupus Docs in the UK. We would all love to know.

Your little pup will be a big comfort to you . . . but make sure you follow your dog training book to the letter as these little dogs know how to take over the world. I have two Westies and they will really out-smart you if you aren't careful. Lots of consistent hard work now will pay off for many, many years so it is well worth the effort.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 9/6/2007 12:12 PM (GMT -7)   
Hi Ann,
   It sounds like you are slowing getting a few answers to some of your symptoms. I hope the new meds help with some of the problems you have been having and you will start to feel some improvement. I know this has been a very trying process for you...((Hugs)).
  Hopefully, things will start going in the right direction for you soon. Please take care and keep us updated. You continue to be in my thoughts and prayers.
                                                           Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 9/6/2007 8:35 PM (GMT -7)   
opps, again, I must have forgotten to tick the box for forwarding responses to my email! Thanks
Rosie and Babs for your kind comments and Rosie for the computer lesson!!! I will do what you say.
Well the guy in London is a guy called Professor Graham Hughes. He has accolades and creds longer than your arm.
But a friend of my twin who is also a doctor fears that he would be now nearing retiring age and I hope that isnt true as he is just a wonderful, kind gentle and good man who seems to really know what he is about and the first decent doctor who treated me with true integrity as a human being, I call "the old school type" not a jump upped arrogant, God like figure as so many here in this darn country seem to be.
I'll have to learn more about Sjogren's.
I am only half way there thoguh I think cos of the muscle wasting and the dystonia and some of the other symptoms and the pos Dat scan, which a few seem to think is only a research tool. yet being used in many places as a diagnostic tool.
He did not actually give me a treatment regimene and the pain is horrible. I wonder do I find a rheumy here? He agreed that he would like to help me and will try and get me better than I am as he feel sure I can be better then this.
thanks again.
I will do my cut and paste tomorrow, as it is around 4am ish here in Ireland.
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


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 9/6/2007 10:31 PM (GMT -7)   
Hello Ann,

Ah, the luck of the Irish was with ye! Sjogren's can most definitely have neurological involvement. The majority of people with Sjogrens do not have it (just as the majority of people with lupus do not have neurological involvement), but it certainly does happen. There are on line support groups for it, too!

Loved your stories about your new sweet little spoiled child (puppy)...Also so glad you and your sis are still gigglin' it up and being silly and naughty. Keep it up!

Thanks for letting us know how you are doing. Be sure to keep us posted.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/7/2007 1:16 AM (GMT -7)   
Hey Anne!!!

Dr. Hughes!!!!! YES!!!! World renowned!!! Wooo Hooo!!!! I'm glad to hear he is still in active practice. I've seen posts from several who were dx'd by him. I wonder if he would give you some kind of a written statement you could use when seeing other doctors.

Let us know how your treatment plan evolves. Do you have a next appointment scheduled??? He did start you on some pretty heavy duty meds, so he is likely waiting till next appointment to add to it. The sticky blood was important to treat first as it can cause some serious problems (stroke, DVT) when left untreated. Be sure to call his office and talk to them about pain management if things are pretty bad. . . he may have just forgotten to deal with that part.

Keep us posted!

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator

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