Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]


advertisement
Reply
 
Thread Tools Display Modes
Old 08-12-2016, 04:02 AM #1
KirraJade's Avatar
KirraJade KirraJade is offline
Junior Member
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
KirraJade KirraJade is offline
Junior Member
KirraJade's Avatar
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
Default I still say it's not scleroderma!

Hi, I am updating my situation here. I have a thread in the MG section, if anyone is interested. Kiwi gave me a lot of great advice, almost one year ago. I apologize I haven't been around until now, but it's taken until now to get the tests done. I have also been caring for mum who has cancer. Diagnosed 30 years ago with diffuse scleroderma. Always doubted the diagnosis. Symptoms are raynauds, muscle weakness, fatigue, pain throughout body, gord, narrow and ulcerated esophagus, can't tolerate hot or cold, severe sinus issues with something definitely wrong going on there, deafness in right ear with loud noises going on driving me insane, burning and red right ear, tiny red spots over my face, that sometimes they seem less, so I know they aren't permanent (love to have them go), tip of my nose feels weird, like hard. Thickening of skin on fingers, but no clubbing. Low blood pressure when standing (often faint), lose salt (urine, and skin always tastes salty), blood in urine, lung issues, but not calcified. Legs look awful, purple and white. Circulation poor. There is probably something I have missed. Generally, my quality of life is poor. I am (and never in the entire 30 years) been on medication. I was always told side effects would make me feel worse. I am hitting send, in case I lose this.
KirraJade is offline   Reply With QuoteReply With Quote

advertisement
Old 08-12-2016, 04:34 AM #2
KirraJade's Avatar
KirraJade KirraJade is offline
Junior Member
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
KirraJade KirraJade is offline
Junior Member
KirraJade's Avatar
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
Default continued

Have a new doctor team, the others retired. Recent tests, and can someone make sense of them to me? Or have an opinion of what autoimmune disease I might have, so I can ask to be tested for. I really believe I have Flammer syndrome as I have all The symptoms, right down to no sensation of thirst. This isn't autoimmune, but I may have this as well. Maybe this is causing some scleroderma symptoms. Would explain myasthenia symptoms, as vessels that go into spasm at any particular time carries messages and they can't reach cells or muscles etc. Why I feel hypothyroid, but blood tests show normal. The stuff is in the blood, but sometimes can't get to where it's needed. Same with oxygen. Hope I make sense. My ANA titres (yes, two). Both were 1/2560. One nucleolar stain, the other speckled. I have tested negative for lupus, coeliac, sjrogens, hashimotos. One test came back low positive for graves disease, next time negative. Ena screen was negative. CReactive protein was normal. Normal ANCA, coagulation studies normal. Iron, Vit D, Vit B12 normal. Parathyroid was elevated, 10.5 and shouldn't be over 5.5. I am slightly low on calcium, but endo isn't concerned Over the elevated parathyroid??
Now, scleroderma came back NEGATIVE. I had these: ku, Pm scl 100, Pm Scl 75, Ro 52.
Is there any other tests for scleroderma?
I feel like I have something else wrong, and no one believes me. I honestly feel like I am going to die soon. I get heart palpitations, but not all the time.
Thanks If you have read all this. Just adding, my eyelids are purple, might mean something.

Last edited by KirraJade; 08-12-2016 at 04:39 AM. Reason: forgot something
KirraJade is offline   Reply With QuoteReply With Quote
Old 08-12-2016, 08:20 AM #3
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

I was sorry to read about your Mum - I hope that she is recovering well from her treatment .

Nucleolar/speckled ANA patterns can indicate both scleroderma (which seems to have been ruled out) and polymyositis.

Polymyositis comes in many forms. One, called dermatomyositis, includes blue-purple discolouration on the upper eyelids as a clinical sign. This fits with (your words) "my eyelids are purple".

There is some information about the various forms of polymyositis here; Myositis - Polymyositis and Dermatomyositis. Information | Patient.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KirraJade (08-12-2016)
Old 08-12-2016, 09:20 AM #4
KirraJade's Avatar
KirraJade KirraJade is offline
Junior Member
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
KirraJade KirraJade is offline
Junior Member
KirraJade's Avatar
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
Default you're a legend kiwi!l

Thanks so much. I was really hoping you would still be here. Checking the link soon as I post this. I can't remember if my GP tested polymositis, but I will check tomorrow as he gives me copies of all my blood tests. Do you have any insight as to why there are two ANA positives? Does that mean two diseases? I haven't seen my rheumatologist since getting those results back, my GP slipped them to me. I think I would have more support seeing an immunologist. The problem I always encounter with rheumies is that they don't like to over ride another rheumies diagnosis. He did find a nodule on my right lung. I'm hoping that is just scar tissue from when I broke my ribs and punctured my lung. He will check when I bring in those xrays to compare. So, I wonder if he will rule scleroderma out after 30 years, when he reviews my labs. Do you know if those scleroderma panels are definite, or can one fall into serum negative scleroderma? You don't have to reply tonight lol, I am just happy you are still here. You understand what I'm saying, and show me where to find answers, and that helps me so much. I feel like I'm going crazy sometimes when nobody believes me how weak I feel. They haven't been testing the right parts of my body, just the scleroderma parts.
Thanks for kind words about my mum.
KirraJade is offline   Reply With QuoteReply With Quote
Old 08-13-2016, 02:59 AM #5
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

This is a bit outside the stuff that I know about professionally but my impressions are:

ANA staining patterns can be suggestive of one or more auto-immune diseases but they are not diagnostic.

Sero-negative (ie, there are no detectable antibodies specific for the various nuclear antigens, Ro52 and others) scleroderma is known. My guess is that this is because it arises from over-production of collagen (for reasons which are poorly understood), sometimes but not always with an auto-immune aspect.

I think that your idea of getting a referral to a clinical immunologist is a good one. You could collect all of the clinical paperwork from your GP, show it to the clinical immunologist and see what s/he thinks.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KirraJade (08-13-2016)
Old 08-13-2016, 08:35 AM #6
KirraJade's Avatar
KirraJade KirraJade is offline
Junior Member
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
KirraJade KirraJade is offline
Junior Member
KirraJade's Avatar
 
Join Date: Sep 2015
Location: Australia
Posts: 17
8 yr Member
Default

Yeah, it's really confusing. I never knew of the speckled ANA, so it really seems there is a second autoimmune disease that's never been diagnosed, or has appeared within the last year or so. That may be causing me to feel as bad as I do. I see GP on Tuesday, so will ask for a referral to see immunoligist (clinical). Hopefully they have one in Adelaide. I am making a list, and begging to be helped. At least there must be something I can take to feel better than I do. Life should not be this cruel in today's world. I also wish my friends would understand instead of thinking I need to snap out of it. Ironically, I'm the first one who turns up for them when they get sick or hurt. I have not been offered help from one of them. I'm a bit hurt over that. I will update each time I get news, and keep this thread going. One day, someone may find that my journey helps them.
KirraJade is offline   Reply With QuoteReply With Quote
Reply

Tags
blood, ear, poor, skin, urine

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
scleroderma skin lesions? Synnove Autoimmune Diseases 5 08-29-2013 01:20 PM
peripheral neuropathy and scleroderma Synnove Peripheral Neuropathy 10 03-11-2013 10:03 AM
Research on Reynaud's and Scleroderma tshadow Thoracic Outlet Syndrome 3 12-03-2007 04:50 AM


All times are GMT -5. The time now is 05:58 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.