Waiting to find out the prognosis for restr... - Care Community

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Waiting to find out the prognosis for restrictive lung disease caused by severe scoliosis

SuzyKB
SuzyKB

Thanks to thorough investigation by an asthma consultant, I've finally been told I don't have asthma (unless really mild) but I do have restrictive lung disease. The latter comes as no surprise to me as i have had reduced lung capacity since I was diagnosed with scoliosis at the age of 13. What I do find alarming is that I've been told I 'm likely to develop respiratory failure and pulmonary hypertension. I've had a tough few years being heavily medicated for a nasty autoimmune disease pemphigus vulgaris. Luckily that's now in remission. It's been a struggle and I was hoping for better health but it seems unlikely now. I'm like a cat with 9 lives. I seem to have used up a few recently. I would appreciate any advice on how to keep a sensible perspective and how to speed up care? So far this diagnosis has taken about 18 months (I was mistakenly treated for asthma for 25/30 years!). I want to find out what I can do to have the best quality of life. I'm open to your suggestions.

5 Replies
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Hi SuzyKB. I noticed that you haven't had a response to your post. Unfortunately I have no experience with what you are going through so I'm not sure I can be of assistance, I just wanted to comment to say that I have read your post and offer a shoulder...

You haven't given much detail on what care you may need, perhaps it would be worth speaking to someone from your local council's adult social services to see if you can get a care assessment to find out what is available and what fits your situation?

SuzyKB
SuzyKB in reply to lharris

Thank you for taking the time and thought to reply.

I'm seeing an experienced consultant soon so I should get some help if needed. This should make a huge difference. I've had some challenging health issues since 2012, having led a pretty healthy life until then. I just thought I'd worked my way through that and come out the other side in one piece when this latest diagnosis gave me quite a shock. I feel tired of struggling with my health. I've received tremendous medical care for which I'm profoundly grateful but it involves lots of time and energy. In the last week I've been referred to the wrong clinic, had potentially important test results delayed by a month and had difficulties getting a repeat prescription in time. It's hard work! Having a rant on a website like this is a chance to let off steam so please don't take it to heart on my behalf.

I've got a local meditation group which is totally brilliant. It does help me a lot. I recommend sahaja meditation to anyone who's stressed about their health.

lharris
lharris in reply to SuzyKB

It sounds like a mental challenge as well as a physical one. I hope you are taking some time to look after your general wellbeing too.

I'm glad you are receiving some support and I hope the consultant can provide some assistance.

Good luck :)

Hi. Am Noemi. I have as well thoracic scoliosis since teen age and i feel i don't get enough air and difficult to breath sometimes. Do you think i should check with GP my lungs. Hope you get better.

Callendersgal
CallendersgalModerator in reply to noemi74

Hi noemi74,

I just noticed your reply to this earlier message on the Care Community, and also that you've only just joined us, so I'd like to welcome you to this forum.

Although your post was a reply to another question, I notice you asked if you should see a GP because you are finding it difficult to breathe sometimes, Whether that's caused by your thoracic scoliosis, or something else, I just wanted to say that that's really the very best thing to do whenever you have a health worry. So please do make an appointment and get this checked, just to make sure.

Please feel welcome to join in at this forum whenever you'd like, but you might find another group which deals more closely with your condition if you do a general Communities search in Healthunlocked.

Meantime it's great to see you here and do go and get some help and advice from a GP with regard to your breathlessness.

Very best wishes.

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