smanda

Still waiting ...

22 posts in this topic

hi all .. I don't know whether anyone can help .. you've all been great in the past.

 

In short, 5 years ago my hands swelled and body tingled, my feet had severe pins and needles for a few days. I then had odd symptoms for a number of months .. nothing concrete. My lips were very red and cracked. Had all relevant antibody tests .. all negative.

 

Things kinda went away for 4 years apart from odd things. Then about a year ago my face started going red for a few days at a time and stung. This was accompanied by terrible headaches and sore throat and general unwell. Went on 3 months.

 

Then 9 months ago my big toes went numb and I developed raynaud's. My whole feet go blue and the toes blanch. My fingers and hands go blue too but haven't had blanching yet. I had another round of tests including ESR and immunology .. again all negative. I also had capillaroscopy .. negative for abnormalities.

 

I now have general prickling sensations (mild burning) in body on occasions, I get small cuts and paper like cuts on fingers and have lots of ulcers both oral and down! On the whole I'm well .. I run and have three young children and am not hindered by anything. I do have the odd achey joint morning though and burning in clavicle area. Sometimes when it flares the underside of my forearms have red scratchy marks on them and they sting as they appear. My rheumatologist thinks I have primary Raynaud's as all tests negative. I would like to believe her but I don't know.

 

Has anyone had all negative blood tests .. absolutely everything is negative but still have this disease or similar.

 

thanks

Smanda

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Your symptoms mirror on how mine started. It was diagnosed as peripheral neuropathy by a neurologist. This tingling went to numbness and from there it went to pain. I now have nerve damage from my feet up to my knees. Some of this damage is permanent. The first neurologist that I saw at the Mayo Clinic said I should just "live with it". However I knew more was going on. Thankfully the next neurologist I saw at the University was the leading speciallist in peripheral neuropathy. He however was not happy with what he called "the puzzle pieces" not going together and then referred me to the rehumatologist who then diagnosed Systemic Scleroderma, Sjogren's and Raynaud's. Since then I have also had the diagnosis of Polymyositis.

 

My advice would be to contact the Peripheral Neuroapathy Association (find it online) and find out who is the leader of that association in your state who can recommend a neurologist who specializes in this. From there then he/she can decide if you also need to be seen by a rhematologist.

 

That's how I found the neurologist. I contacted the assocation who called me from New York who gave me the person's name in my state who then referred me to my current neurologist. Thank heavens! I had been doctoring for a year from doctor to doctor, clinic to clinic, and no one seemed to know what was going on.

 

Don't give up. You have be your own advocate and keep going until you have answers.

 

Warm hugs,

 

Peggy

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Hi Smanda,

 

I was diagnosed with diffuse scleroderma in 2006 and have yet to have a positive ANA. Although a positive ANA assists in the diagnosis, the diagnosis is primarily made based upon your clinical presentation. While I was diagnosed in 2006, my Raynauds didn't show up until 2007, which is somewhat unusual as it usually presents as one of the early symptoms. Bottom line is that the ANA is simply a diagnostic tool but doesn't necessarily tell the whole story.

 

I think Peggy gave you some very good advice. You have to be your own advocate.

 

Good luck.

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Hello Smanda

 

I was diagnosed in 2007 with diffuse scleroderma I had then and still have a negative ANA. My capilaroscopy did not show major changes although enough to merit a diagnosis of raynauds. My raynauds did not come as a first symptom either it was diagnosed same time as the sclero, I'd never heard of it the sclero I had.

 

According to my rheumatologist I am atypical in presentation, then again lots of people are atypical when it comes to presenting with scleroderma which is one reason it's such fun getting it diagnosed. Added to that is the point GocartMozart made which is no one tesr can rule scleroderma in or out.

 

At present you have not been diagnosed with scleroderma so I would suggest that you carry on regardless by which I mean live your life in the meantime, making the adjustments you need for the raynauds. You may never hear the dreaded S word from a doctor then again you may hear it next week, the fact of the matter is no one knows and no one can do anything to effect the outcome either way.

 

It's helpful if you can draw a fine line between being your own advocate, knowing your body ain't quite right and pursuing matters accordingly whilst living life without unnecessary focus on every little twinge.

 

In the meantime you can be sure of the support and first class advice you will get from this forum :lol: . Please keep us posted.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi smanda,

 

Sorry you are having some symptoms that are bothersome. For many years things would happen to me too and all labs would be normal. Even when I had fevers with flu like symptoms, all labs would be normal and then things would go away and come back, months and even years later. Raynauds and GI symptoms would always be there and the raynauds seemed pretty benign, meaning it would only bother me alittle in the winter months. My fingers then would turn numb and white for a few minutes then clear. This all started when I was in my thirties. Periodically I would ask a doctor to check for an ana which would be negative. I would just go with the flow because I was young. When I felt not so well, would get checked out. Never had a positive ana till I was in my late forties. They still are not positive all the time and no specific autoantibodies for scleroderma. I still have limited scleroderma, cREST.

 

I believe all symptoms bare watching and hold merrit because pain is not normal and there is always a reason for it. Sometimes you just have keep on top of things and ask questions.

 

Keep us posted and take care.

 

Judy


A happy heart is good medicine.

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hi and thanks for response,

 

Did you however have positive result to any of the immunology tests ie, ANCA, ENA etc. Or have elevated ESR or CRP. I am trying to be hopeful as everything (after 5 years) is still negative. I know something is going on but am trying to believe that perhaps it won't evolve as everything is negative and I am well really

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My diagnoses have mostly been symptom based and even my symptoms have not presented themselves in a "traditional" manner. I was told I did not have sclero or an auto immune disease by an "expert" because my symptoms didn't fit his idea of what scleroderma looks like. I have always had a positive ANA. My ANA started off as 1:40 then 1:80 and then 1:640 and has always been speckled. I have never been positive for any other rheumatologist related blood tests. My CRP was high at one time, but I don't see that it's been checked recently. Now that I have been diagnosed with Raynauds and Sjogrens I wonder if some of the other tests will look differently or still reflect negative.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hey smanda,

 

My labs are generally normal including cpk, c4, c3, chemistry, cbc and esr and (liver panel due to meds). Urine shows tr to 1+ protein almost always and most recent was normal. :) The only other + tests were for anticardiolipins and ana. My thyroid (tsh) level showed hypothyroid with + autoantibodies for grave's disease. The thyroid is controlled with thyroid meds. These tests became + within the past 8 years but they are not always positive so it is just by change they have been found. My rheumatologist does a series of tests about every 3 months and sometimes in between for lupus, sjogrens, scleroderma and most of the above give or take a few months depending on what lab is needed. She does not test for anticardiolipins because she said they do not treat that until there is a thrombus event found somewhere (if I survive). <_< That is exactly what I have found written in most articles too. She said the test does not show if I have a clot anywhere or am ready to throw one. I am suppose to take a baby aspirin every day but it really creates havoc with esophageal reflux. I take what I can.

 

Does any of this help you? It has trully been hit or miss with me. I tell them my symptoms and they watch out for me as best they can. I take one day at a time as it is given.

 

Hope you do well and the symptoms go away and the tests remain normal for you.

 

With caring thoughts and a hug.

 

Judy


A happy heart is good medicine.

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Hi, Judy. I noticed that you are having trouble with your prescribed daily aspirin dose. You should be able to get the lose dose aspirin in an enteric coated form which does not dissolve until it gets to your intestines - this should help with any reflux issues. For it to be effective, it should be taken daily. Talk to your doctor about this.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Jefa,

 

Thanks for the thought. We have tried enteric coated baby aspirin and it too causes problems. I also have been told I have poor antral motility which means things just sit in my stomach for too long and causes great distress sometimes. Have been doing better eating small freguent meals but it doesn't help medication wise. As much babying we have given to my stomach, it still rules. Maybe my gastro will have a new idea this time; I will ask him tomorrow when I see him.

 

Thanks, Judy


A happy heart is good medicine.

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Hi Smanda,

 

YOu have had good advice here and probably more help here than you feel you can get elsewhere. When these autoimmune diseases show up, our world is never the same . You presented alot like me except I had more internal involvement. None of my tests showed positive for four years as mine came on so abruptly. One of my first symptoms was the neuropathy. I too have had the cat scratches, paper cuts(have some right now) >I have a vasculitis component to my MCTD and a differential diagnosis from one doctor was Bechets. You mentioned ulcers up and down. That is charateristic of Bechet's but definetely could be anything. You are on the right path. Be patient and don't let it take over your life. It is easy to become obsessed with all of it and it will just be a slow process of elimination and watching. I would make a symptom list and keep them for doctors. Mine can jump around so much , it did help.

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<<I was told I did not have sclero or an auto immune disease by an "expert" because my symptoms didn't fit his idea of what scleroderma looks like>>

 

Hi Smanda ,

 

Just like Smac, my son had the positive ANA, speckled pattern, diffuse: high SED rate, esophageal dysmotility, lost his voice, depression/major fatigue, restricted lung problems, 20 pound weight loss, and yet, by the 'expert' did not have Sclero because he had no skin issues, capillary variation, or Raynauds. Fortunately, his rheumatologist did start him on Plaquenil after 9 long months and he is doing OK now. I have learned that having positive blood work really doesn't 'make' the diagnosis. His diagnosis now is undifferentiated connective tissue disease (UCTD).

 

Take care, Everyone.

Margaret

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Hi,

 

smac0719.

 

I am non expert, but at least all my labwork always considers any ANA value of <1:80 as negative...so your first and second I guess was negative....some doctors even use different labs that use a different method and hence come up with a <1:100 value and consider that as neg too....so I guess the only time most doctors would say was positive is your 1:640 result?

 

K.

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Anonym44,

 

My primary actually considered the 1:80 a low positive. I went to see the 1st rheumatologist then because I also had the fatigue and achiness. I did not have the tightness and swelling them. The "expert" that I went to several months later (after 2 rheumos couldn't figure it out) said the 1:640 just meant I had swelling. Well you think??? I had severe tightness and swelling in my arms, feet and legs at that time so it's no wonder it showed up in my blood work. I'm curious to know how my ANA and other rheumatoid factors will show today so I'm going to ask my rheumatologist if he'll check them. They haven't been checked in quite a while.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Smanda,so far a lot of my test have come back neg.My doctor is sending me to see a gastro doctor and rheumatologist.A lot has

been 50\50 like my thyroid and have to do them again in three month's.If you think you have sclero or some thing like it keep going back to your doctor or find someone who will listen to you.I have had all the same symptoms like you.When I think im getting better I get some thing new.It's never ending .Good luck and warm wishes Gina. :)

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