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#1 Sandy B

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Posted 07 July 2010 - 01:50 AM

Hi All,

Breathlessness is a daily problem so I finally got referred to see a Doctor at the Lung Clinic The long and the short is, although my capacity is good, the transfer of oxygen from the lungs to blood is only 70%, which I found quite alarming. The Doctor was talking as if fibrosis of the lungs is a foregone conclusion, I guess the question I want to ask is can fibrosis of the lungs be diagnosed by lung function tests alone. He is arranging a high res. CT scan (to get a clearer picture and see if there is any heart involvement) and wants to see me in four months time or will call me back sooner if need be, depending on results of scan.

I asked the question, at what point will treatment be considered and was told when it drops to about 60%, this is when most people experience symptoms, but I feel light headed most of the time already, have occassional very dizzy spells and generally feel as if I am not getting enough air in my lungs, so consequently get breathless. The idea of having to feel 10% worse before anything is done is quite scary, as I'm still working, albeit part-time to try and keep a roof over my head and maintain some sense of normality.

Also had a very peculiar experience this morning, not sure if it is sclereo related, so would appreciate any comments. For about thirty seconds this morning, I suddenly experienced double vision, this was totally out of the blue and unlike dizziness as I know it and it felt like my eyes had gone into an involuntary spasm and were crossing. Has anyone else had experience of this and what is it, very odd sensation?

Sandy B

#2 Amanda Thorpe

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Posted 07 July 2010 - 08:36 AM

Hello Sandy

Pulmonay fibrosis might be a foregone conclusion to them but not to you. We have a section about pulmonary fibrosis which states: Diagnostic tests for pulmonary fibrosis include CAT scan, echocardiogram, pulmonary function test, chest x-ray, bronchoscopy, and bronchoalveolar lavage.

It is good that the doctor is going to monitor you closely and have you back in 4 months if the tests shown nothing this time round. If you do have to have treatment there are many on this forum and people I know personally who found the treatment, cyclophosphamide extremely helpful in improving their quality of life. Please keep us updated on what happens and meantime :flowers: for you.

Now the double vision thing I have no idea about and think you should see your doctor/optician just to be on the safe side.

Take care.
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#3 Joelf


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Posted 10 July 2010 - 02:35 AM

Hello Sandy

Sorry, I meant to reply before, but have been so selfishly absorbed with myself & my shingles I haven't got around to it!! :rolleyes: Thanks very much for your kind wishes on my other thread. :wub:

I have lung involvement & at it's worst my TLCO was 48%. I certainly don't think that Pulmonary Fibrosis is a foregone conclusion & you should certainly have all the tests that Amanda mentioned, which I did.

It's a good thing that they are keeping an eye on you, although in my case they whizzed me through & onto the treatment a bit quick as they felt that the 'fibrosing organising pneumonia' was progressing quite fast. As it was caught early a lot of the 'ground glass' in my lungs turned out to be inflammation rather than established scar tissue so the Cyclophosphamide treatment which Amanda mentions was very successful. :VeryHappy:

Sorry I can't advise you about the double vision but it's certainly worth getting it checked out.

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#4 judyt


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Posted 10 July 2010 - 04:50 PM

Hi JSandy,

I am writing to tell you about double vision.

First, of all I must tell you that I have suffered from bouts of double vision for about 40 years!! and nothing bad has happened.

I have actually also had migraine headaches since 1966 and the opinion seems to be that this double vision is actually a visual migraine. I no longer have to put up with migraines since my general practitioner introduced me to amlodipine in 2003 to control my Raynauds which confirmed to me that my migraines were vascular. I do, however, still get episodes of double vision and believe they are vascular also. Extending on from that, it is said that Sclero is a vascular disease - or at least has a strong vascular component. I believe, and nobody has ever contradicted me, that my CREST probably has more vascular effect than the average. I have very incompetent veins in my legs and always have had - well as an adult anyway - I don't remember noticing anything amiss before I was 20 but certainly quite soon after that I developed quite obvious varicose veins. I have never been pregnant nor have I had a job which involves standing up all day so Scleroderma seems to me to be the culprit. In fact, the Vascular Surgeon I was sent to in 2003 was the one who suggested CREST.

My Neurologist's opinion (funny how we sclero people like to OWN the medical specialists we consort with isn't it!!!!) is that if the double vision lasts for seconds rather than minutes it is nothing to worry about and if you cover one eye your vision returns to normal. At the most I can only call it a nuisance and I do hate driving with one hand over my eye so I don't crash, hate reading with one hand over my eye too particularly when I am tucked up in bed with a good book!!!

There are other conditions which cause double vision e.g. Myasthenia Gravis which is a progressive muscle weakening disorder, but it is unlikely you are getting that too if double vision is your only symptom. You would probably also have at least one lazy eyelid. There are lots of other conditions too, and you would be wise to mention it to your Doctor next time you see them.

Please note that like others on the Forum I am not a doctor and in fact I only know about MG because my brother has recently been through the process of testing for Myasthenia Gravis.

I hope that like me this turns out to be nothing to worry about.
Good wishes from Downunder.

Judy T

#5 Sandy B

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Posted 12 July 2010 - 03:23 AM

Hi Amanda, Joelf and Judy,

Many thanks for your very detailed replies. I thought the Doctor at the lung clinic was rather jumping the gun, so relieved you think so too, will now await the outcome of CT scan when I get the appointment through (I was told the waiting time is usually about six weeks).

I have now booked an appointment for tomorrow at the opticians, so will see what they have to say about the double vision, could very well be due to migraine, as I do get them occasionally, but usually I get flashing lights, so thanks for your advice on this Judy it was very helpful.

I may also make an appointment to see my general practitioner and run things past him and see what he thinks about the Doctor's opinion at the lung clinic (and TLCO results) and also mention the episode of the double vision depending on what happens at opticians tomorrow.

It certainly helps to have you guys (ok girls) to run things past.

Take care

Sandy B