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Positive ANA - lost ability to walk without gait - doctors are confused.


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#1 CmeBe

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Posted 18 July 2014 - 02:27 PM

Hello

I am new and don't know where to turn! I am a 20 year old female.

 

I was admitted to the hospital about a month ago due to pain in my calves - muscular pain. It was horrible. Muscle spasms all throughout my legs and tingling. They just wrote it off as the shoes I was wearing but it has lasted over a month and I stopped wearing those shoes.

 

My fingers stiffened up so badly I couldn't write. After I was discharged they got my ANA blood test back as 1:160. Rheumatoid Arthritis runs in my family. My mother has it very severely. Although my RA test came back negative at a 9 on a scale of 11.

 

I've been breaking out in these rashes on my shoulders. I had one for about a month and now there is a scar there from it. I'm very fatigued. Everything else is negative or clean. My potassium was low but now is resolved. I have started physical therapy. A test called SCL 70 came back positive at 2.4 but the doctor has not called me yet. They have done every test known to man and I'm alright.

 

I do have a history of chronic constipation, gallstones which have been resolved by surgery, IBS, mild acid reflux, depression and anxiety due to the gallbladder surgery. I have lost six pounds in two weeks but now I got myself back to 105pds. I do not have Raynauds but I do have horrible loss of circulation in my feet where they turn purple and blue as well as my hands. Blotchy white but never full on white like Raynauds..

 

Thoughts?



#2 Joelf

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Posted 19 July 2014 - 07:16 AM

Hi CmeBe,

 

Welcome to these forums!

 

I'm sorry to hear that you've been having worrying health problems; although some of your blood tests have come back with a positive result, unfortunately that can only be part of the picture. Even a positive result for the SCL-70 antibody doesn't necessarily mean that you will go on to develop Scleroderma as Autoimmune diseases can be notoriously difficult to diagnose, not least because the symptoms can mimic other diseases and tend to affect everyone on a different way and it is quite possible to have positive antibodies without developing the full blown disease (and vice versa.)

 

I have no formal medical training (apart from a now out of date first aid certificate) but I would suggest that having seen your doctor and had preliminary tests, the next step if you're still not feeling right would be to consult a Scleroderma specialist as sadly many rheumatologists do not have the knowledge and expertise to deal with such a complex disease as Scleroderma.

 

Now that you've joined our community, I'm sure we will have more of our members able to offer you helpful advice and support.

 

Kind regards,


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#3 Shelley Ensz

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Posted 21 July 2014 - 10:35 AM

Hi Cmebe,

 

Welcome to Sclero Forums.  I would also say that your next appropriate step would be to be seen by a scleroderma expert. 

 

I'd also like to assure you that a positive SCL70 does not mean that you absolutely have scleroderma, but it does mean that you should be evaluated for it, just in case.  Sometimes people are monitored for years before they are declared out of the woods entirely, and sometimes more specific symptoms develop over time.  So, needing to see an expert doesn't mean you have scleroderma or that you are developing it.  At your stage and age, it is a bit more precautionary, and the advantage of seeing an expert is that you won't be sidetracked for years by doctors who haven't the least bit idea what scleroderma is, or how it is diagnosed, or treated.

 

One thing you might be up against is that symptoms of any autoimmune diseases, even positive bloodwork, are more common in relatives of people who have any autoimmune disease.  So you might fall into the camp of folks who always have a smattering of health issues and positive antibodies, but that never go on to develop a full-blown disease of any kind.  At the very least though, this should be a wake-up call for you to make sure that you develop and maintain a healthy, well-balanced life in every regard, mentally and physically.  It's good you got your weight back up. Please stay in counseling, if you need it, because this is a stressful time and you want to make sure it doesn't derail your budding life plans (school, work, relationships, hobbies).

 

We are always here for you, come what may.  Maybe all these things will resolve, maybe not. Some of our members have had pesky symptoms and positive bloodwork, and then things just suddenly or gradually resolved (the immune system is amazing in ways both good and bad).  You might very well be one of those lucky ones!  But in the meantime, just to be safe, get your SCL-70 test reviewed (and maybe even repeated) with a scleroderma expert.  A large portion of lab test results are erroneous -- so keep that in mind, if/when you are in danger of losing sleep over any of this, okay?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Amanda Thorpe

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Posted 21 July 2014 - 11:37 AM

Hello CmeBe

 

Welcome to the forums.

 

Raynaud's is an extreme spasm of the blood vessels in the extremities in response to cold or stress. It is not necessary to have the whole red, white and blue colour change experience to have Raynaud's. In fact I have mild Raynaud's and have no colour changes at all, I didn't even know I had in until diagnosed with it when I had a nailfold capilleroscopy . Stress is my problem, I can actually feel my fingers, followed by my toes, go cold when I get stressed. Cramp is my worst Raynaud's symptom as well.

 

If you seriously think you might have scleroderma then I'm with Jo, see a scleroderma expert, even if they said you didn't have it at least you'd know for sure. It really is a complex and difficult disease to diagnose given that there is no one specific test that rules it in or out. Rather diagnosis is achieved with a combination of medical history, clinical exam, test results, maybe biopsy and blood tests to support diagnosis. You might find these videos helpful: diagnosis of scleroderma and symptoms of scleroderma. 

 

The diagnostic process is not simple or quick when it comes to scleroderma so why not have a wander around the site and post anymore questions that you have here.

 

 

Take care.


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#5 Kathy D

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Posted 21 July 2014 - 08:06 PM

Cmebe,

 

I met a very old woman a few years back with systemic scleroderma.  She only had a few minor afflictions and was spry for her age. 

 

I was (un)fortunate to be diagnosed quickly, my blood tests came out quite high and I had so many clinicals lol.  I remember waiting to find out why I was not able to function like I used to and it was hard to wait for results that took 2 weeks at a time to come back.  It was scary, not a fun time.  Hang in there darlin'  :)    I have gone many years with a fantastic life since before my symptoms!!

 

My elderly father has RA and it is severe though he copes with medications.  And yes, I have a laundry list of relatives and distant relatives on that side of the family with every autoimmune disease you can name, though as Shelley mentioned, I also have even MORE relatives that I assume carry the same autoimmune genes and have no afflictions what so ever!!

 

I also was told autoimmunes commonly affect us from 30-50 years old.  As you test positive without afflictions  you are quite young; I might ask for a referral to an internist or endocrinologist if I were you.  There are so many things that can cause similar symptoms to systemic scleroderma.

 

I have learned to love the generics of nutrition drinks for nourishment.  Try them!  You will feel better after drinking them!  Make sure they are cold lol or they don't taste that great.

 

Please give me an update. 

 

KD


Diffuse Scleroderma Diagnosed March 2009

#6 CmeBe

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Posted 22 July 2014 - 09:17 AM

Thank you all for the responses, it is very helpful! I appreciate it.

 

I did make an appointment with a different rheumatologist on the 18th of August. A ways out yet. I do see an internist and she has been very helpful and really listening to me compared to everyone else. I am feeling a lot better but deal with fatigue almost all the time. I can take a nap and still wake up extremely tired. I know stress is what triggered my symptoms. It was so scary since I couldn't walk on my own anymore. I was fitted with a walker and a cane, which the cane I used for over a month after. My left foot stopped working completely. I could barely move my toes. I do get headaches quite a bit most recently. It's almost like everything went bam, bam, bam all at once out of nowhere.

 

I'm just scared of it happening again because waking up everyday I won't know if it will come again or just be a normal day. But now its like I'm back to normal and am just waiting for it to hit me again. Recently I've noticed on my right foot it feels like there is tape of the bottom pulling tight. I just wish they would have ordered all these tests while I was in the hospital, but I suppose they had no idea.

Once again thank you all for the support; it makes me feel not so alone! :thank-you:



#7 Joelf

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Posted 23 July 2014 - 02:39 AM

Hi Cmebe,

 

Fatigue is a real problem with autoimmune diseases and I've included a link to our medical page on the subject to give you some more information. It includes one of Amanda's super videos, which I'm sure you'll find interesting and informative.

 

I can understand how worried you're feeling and I think that an illness like Scleroderma can cause a distinct loss of confidence.I'm glad to hear that you have an appointment with another rheumatologist quite soon and hopefully, this might give you the help and advice you need.

 

Please do update us after your appointment and let us know how it went.

 

Kind regards,


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#8 CmeBe

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Posted 01 August 2014 - 12:56 PM

I think everything has finally hit me. After being hospitalized in June for basically losing my ability to walk, I never felt sad about it. In fact I was the only positive one because I knew I wasn't dying. But today has been especially hard for me. I'm doing okay, no real symptoms to report except for the usual fatigue, oversleeping, and my calves are killing me again today but I think that's because I'm trying to get back into exercising again and went for a mile walk yesterday which I could do before with no problem. Still getting rashes but they subside.

 

But today I am feeling kind of sad. I do have a history of depression and I think I'm trying my best to fight it off. I was seeing a therapist in the past and I saw her right after my stint in the hospital but unfortunately they do not accept my insurance and each visit is $140. I want to continue seeing her because I've established a relationship with her, but $140 is a lot for a 20 year old who is trying to make rent each month.

 

I think what really pushed me over the edge and into the hospital was my stress level. I work at a local hospital and my manager doesn't like me much so I work as a casual employee meaning I'm there when they need me. I've applied for other jobs but nothing worth it enough to take. I had an interview for a full time job with her and she denied me for it because she thought I wasn't fit for the job. I've been trying for a year to get even a part time job there but no such luck. I have to say everyone at this hospital backstabs a lot, but they certainly helped me out a lot when I got sick. Which was sad in a way that it took that sort of extreme for everyone to be kind to me. I feel like they are constantly watching me now. Everyone knows what's going on constantly, and it's been bothering me because now I feel like I'm on the stage in the cage and everyone is staring at me. I'm worried of my financial situation - although I got a second roommate which will help me. I'm trying to go to school actually to become a PA and its just a lot going on. I'm trying to get it all settled so I don't get sick again. I'd live with my mother (who has severe RA, I feel guilty I don't) but she lives pretty far for me to be driving to school.

 

I'm just waiting for it to happen again. I may not have a real diagnosis of scleroderma yet or any diagnosis for that matter- but since my antibodies for that are positive its the only thing that makes sense. I do follow up on Tuesday with my Internal Medicine doctor just to see her thoughts on the positive SLC-70 and to talk to her about my constant fatigue. I'm still scheduled to see the rheumy in August but the co-pays are really starting to add up for me! Not sure where my weight is anymore, I'm sure I've dropped as I feel no real appetite recently.

 

Just need to vent. Thanks for reading!



#9 Shelley Ensz

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Posted 01 August 2014 - 03:10 PM

Hi Cmebe,

 

I'm sorry you're feeling sad. :crying:

 

As it happens, much as we'd love to, we are not able to help with mental health issues on this forum. Seeing a counselor sounds like a great idea. Since it would be difficult for your financially, why don't you consult any counselor that is covered by your insurance right now?  It would probably be better than going without or putting yourself in a financial bind. You can always see the other counselor later on, if you need to. 

 

See if you can set an appointment for counseling soon to help you get and keep your stress level under control, okay?  Promise? Crisscross?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 CmeBe

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Posted 07 August 2014 - 11:35 AM

Hi All,

 

Think I was just having a bad day. But yes, I did make an appointment with my therapist. Feeling better.

 

I saw my internist on Monday and she diagnosed or concerned that it is Autonomic Nervous system disorder/failure. She came to this conclusion because I have a muscle twitch spasm thing in my shoulders. I've had it for years, but recently it has gotten worse. Happening more frequently. It's almost like it paralyzes me for a minute. My doctor thought because I was born prematurely at 25 weeks that my brain isn't connecting the messages to my body and vice versa. I actually think this may be my whole problem. She pointed out the constipation, urinary incontinence, blood pooling in my feet are all factors. I've noticed twitching in my face now, around my eyebrows, etc.

 

She prescribed gabapentin for it. Anyone ever been on that/have any info on this diagnosis? Still waiting to see the rheum on the 16th.



#11 Joelf

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Posted 08 August 2014 - 11:29 AM

Hi CmeBe,

 

I'm glad to hear that you're feeling better and that you've made an appointment to see your therapist.

 

I'm afraid I have no first hand experience of  Autonomic Nervous system disorders/failures    or Gabapentin   but I've found a couple of informative links which I hope you'll find interesting.

 

I'm sure we have some of our members who've taken the medication and I expect they'll be along to give you some help and advice about it.

 

Kind regards,

 

 


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#12 Shelley Ensz

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Posted 08 August 2014 - 02:02 PM

Hi Cmebe,

 

Kudos for you for taking good care of yourself by scheduling a therapist appointment. :yes:

 

With a history of depression, it is always best to just nip things in the bud instead of waiting for things to worsen. And, since you might be facing a difficult diagnosis of one sort or another, all the better to have all the support resources you can muster to get through this as best you can.

 

Maybe you are finally getting some answers that can help set things right for you. Please keep in touch and let us know how things go.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Amanda Thorpe

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Posted 10 August 2014 - 01:22 PM

Hello Cemebe

 

I have been on gabapentine then pregabalin, a more effective (and expensive) form of the drug, for about 3 years now. It's one of those medications that takes awhile to start to work but once it does can be very effective. If the gabapentin does not help try the pregabalin instead.

 

Enrolling yourself in a talking treatment is such a good idea, why wait until it gets worse! I really hopes it helps you, living with a chronic illness is hard enough but living with one that can cause/causes a great deal of pain requires even more determination, discipline and coping strategies.

 

Now that you've found us please keep in touch.

 

Take care.


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#14 CmeBe

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Posted 18 August 2014 - 03:02 PM

Hello All!

 

I met with a new rheumatologist today and she didn't quite know what happened either. She said she didn't believe it was all consistent with an autoimmune disease but she did order another SCL-70 and is sending it to a different lab. She said if it comes back positive again I will need to be seen yearly just for a general check up to make sure I'm not developing anything.

 

As for the other issues they suggested seeing a neurologist - but I have basically seen everyone in the book now. I think overall I'm doing a lot better and as I still have some symptoms they aren't as bad as they were when I was hospitalized. I am still taking the 100mg gabapentin which helps me get to sleep, I love it! :tired:  :yawn: When I had my gallbladder surgery about a year ago I was unable to urinate on my own for a few days. I was catheterized, I never got an exact answer on why that happened until I decided to look it up the other day which it was called neurogenic bladder - has to do with the nervous system. I never brought that up to my internist that that even happened and I think that's something she should know. I guess this autonomic dysfunction they told me about seems to make sense after all... 

 

Good news for the most part!



#15 Joelf

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Posted 19 August 2014 - 01:30 AM

Hi CmeBe,

 

Glad to hear that things are settling down for you!

 

It sounds as if your rheumatologist is on the ball and will be keeping an eye on you, without you having to undergo unnecessary procedures and tests.

 

It's always a comfort to be able to get a reasonably satisfactory explanation of your symptoms! :)

 

Kind regards, 


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#16 CmeBe

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Posted 19 August 2014 - 11:10 AM

Update - they ran a Scleroderma panel blood test. How is that different from SCL-70?



#17 Joelf

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Posted 20 August 2014 - 01:18 AM

Hi CmeBe,

 

To help answer your question, I've found a useful link with a lot of information on ENA Panel tests and also specifically Scleroderma tests.

 

Kind regards,


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#18 CmeBe

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Posted 03 September 2014 - 11:19 AM

Well I got my Scleroderma panel lab results back today.

 

Except one problem, when I log in to view the results it says, "See scanned lab report." Guess I'll have to wait for a phone call.