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Alison McK

Scleroderma has suddenly got worse

5 posts in this topic

Hello,

 

I have just joined this site. I was diagnosed with CREST in 2002 and have had very few problems until a year ago when I suddenly started with fatigue, joint pain and inability to do the things I used to do. I have just been started on hydroxychloroquine so hopefully this will help.

 

I am curious that having been diagnosed 10 years ago it has taken this long before I have developed debilitating symptoms. I have always suffered with Raynauds but this too has gotten a lot worse. I have also developed intermittent double vision in one eye (since January 2011) and a chronic sore throat (sometimes severe) since October last year. These two latter symptoms are proving difficult to diagnose and I was wondering if they are all part of the scleroderma? Having been seen by ENT and Ophthalmologist with nothing abnormal being found. Has anyone else had these particular symptoms?

 

I have always been such an active person and this has hit me really hard as I thought "my" scleroderma was a mild form and would not cause me any problems. Is this normal after 10 years to suddenly get sudden progression of symptoms?

 

Sorry for all the questions but hope someone may give me some advice.

 

Alison

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Hi Alison,

 

Welcome to Sclero Forums! I'm sorry that your illness has become worse. As for whether or not it is normal, the thing about scleroderma is that there is no such thing as normal, like there is for many or even most diseases. Scleroderma can wax and wane or even go into remission all on its own, at any time, which is one of the features that makes it an incredibly hard illness to research.

 

To the best of my knowledge -- and please keep in mind that I have no medical training at all -- scleroderma does not cause intermittent double vision (diplopia) or a chronic sore throat. However, scleroderma can affect the eyes by causing normal tension glaucoma; and it can cause acid reflux (heartburn) which can definitely cause a sore throat (and sometimes a severely sore throat, just as you described.)

 

Your doctors will have to get to the bottom of the double vision in one eye, which is called monocular diplopia. I had a friend who had this and for her it was caused by her glasses. When she got new glasses, of better material (made at a better optical company), it completely went away. So if your doctors have ruled out all the usual causes of it, and if you wear glasses, you may want to go to the best optical company you can find and see if a new pair of glasses will help.

 

I am sending some extra warm hugs your way, in hopes you feel a bit better, soon. :emoticons-i-care:

 

: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.

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Hello Alison,

 

Welcome to the forums and I hope you get a lot of help and comfort here. I am one who has had Sclero for many many years and over that time I have had years of nothing much happening followed by busy years when it seems that I can't keep up with it all.

 

For a start the most troublesome thing I had to put up with was Raynauds but now it has completely gone. I got very cold (and remember this is mid summer here) a couple of weeks ago when I went to the supermarket without a cardigan, and although my hands felt numb there was no colour change and as soon as I was outside again and in the car it all went away. So the fact that things are changing for you is probably not surprising, it is just that nobody knows what will be next.

 

Shelley's comment about reflux causing sore throats is a well known happening for some people. Are you on a PPI to help that, or something similar?

I get intermittent double vision and the way I understand it is that it is a visual migraine. Scleroderma is a vascular disease (so I have been told) and Migraines are vascular headaches so there could be the connection. In the past I have had all the required investigations of my headaches, CT included, and the result is that I have Migraines and I have to deal with them. I have just posted on another thread that my headaches are affected by my meds and this could be the case for you too. You will be wise to have all the tests that are suggested for eye and brain involvement but at the end of all that it just might be that you are susceptible to headaches (be they painful or not).

 

Best wishes with your investigations

Judyt

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Hi Alison,

 

Welcome to these forums!

 

I'm sorry to hear that your symptoms have recently worsened; as Shelley has said, unfortunately Scleroderma is a most complex disease and one of it's little idiosyncrasies is that it seems to affect everyone differently. I can emphasise with you, as I've always been very active physically as well and have had to accept that I can no longer do as much as I could before. Like you, I now suffer with pain in my joints, so I understand how debilitating it can be.

 

Are you being treated by a Scleroderma expert? We do recommend that, if possible, our members consult a specialist, as sadly many rheumatologists do not have the knowledge and expertise to deal with this disease.

 

I do hope that these worrying symptoms settle down for you and now that you've found our forums and joined our community, please do keep posting and let us know how you're faring.

 

Here's a few more hugs to keep company with the ones Shelley's sent you!

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Alison

 

Welcome to the forums!

 

I can only support what has already been said, reflux can cause severe sore throat and scleroderma can wax and wane, in fact I have a friend with CREST who managed to go 10 years before taking ill health retirement. She found that the fatigue became worse as time went on becoming debilitating.

 

Hydroxychloroquine takes 3 months to kick in and I found a 30% improvement in fatigue and pain, unfortunately due to severe abdominal pain I had to stop taking it but I'm sure you won't!

 

Take care and keep posting.


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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