Sarcoidosis - not enough care and attention given to sufferers

Oh and my blood tests last week.....ACE & Calcium levels looking good...HOORAY!!!!

Now to see what Wednesday brings at the TB clinic.................

Well I had a really nice chat with someone in the radiology department at my local hospital this morning - clearly a rebel because she was breaking the department rules :-)

Had told the consultant I'm going to a workshop on Cumbrae from 22-26 July and had asked if I should cancel, if these tests were that important. He said he'd pass it on to radiology so they wouldn't book me for that week.

So this morning the radiology lady phoned to check that her suggested date, avoiding my holidays, would suit before she sent out a letter. Their policy is to send out the appointment then if it doesn't suit you phone and tell them, then rather than discuss what does suit they send out another letter; and so on until they finally get a date the patient can attend. But this lady thinks thats a **** stupid idea so decided to phone before she posted out a letter to me. So even though I don't have it in writing, CT has been booked for Mon 29th July at 10 am. Just need to change a GP appointment for 9.30 that day to test my BP after coming off the ACE inhibitor to the following day, if possible. Consultant also wants a blood test to make sure the contrast dye in the CT doesn't upset my kidney function and that has to be done within 48 hr so my GP can do that as well as the BP measurement.

Hoping the CT will be enough to get a diagnosis and think about what treatment, if any, is required. Consultant suggested if it isn't he might have to arrange a lymph node biopsy. I don't mind multiple rounds with the blood suckers/vampires, x ray and CT are ok but I don't fancy the idea of getting hacked into!

Look after yourselves all of you

Morag

Hi Morag,

Glad to hear you have found soemone that was helpful.

Hopefully you will soon be on the right track.

Take care

Anyone close to leeds living with sarcoid??

Hi Annalou,

I am in London.

Is there a particular reason you asked this?

Nowhere even remotely close to Leeds. I'm about 15 miles from Glasgow.

Hi Everyone, Sorry it's been so long since my last post but I have been reading from time to time. Have been unwell and felt too tired to write in.

I see we are all having our ups and downs but it's great to see that some of us sufferers are being given care and attention. Wish all GPs and Docs were so proactive with us.

.

My GP is completely unsympathetic and dismissive, there are too many of this kind around.

I hope you have all been able to get out in the fresh air recently though it's a bit dull at the moment.

I live in Kirkcaldy and because of my noisy nosey neighbour I don't get much of a chance to sit outside after work but its been really good to see the sun most days.

Keep your spirits up everyone especially when you having a difficult time, keep optimistic.

Reading the posts helped me these past few weeks, Take care, love to all, Helen

Hi Helen,

The site has been very quiet generally.

Sorry to hear you have been unwell.

I am one of the lucky ones with care it appears, but I am under the hospital and not my GP really at the moment.

The weather has been great and of course helps to lift spirits.

Awful to hear you have an unpleasant neighbour - not nice for you!

Hope you are feeling better now.

Take care x

Well I've been pretty quiet because not a lot going on really. Still the same sort of symptoms, no better no worse. Had a CT scan on Monday, with contrast dye and got told you'll be told the results "in due course". Then on Tuesday it was a trip to my GP because the consultant wanted a blood test done within 48 hours of the CT scan to make sure the dye hadn't interfered with my kidney function. Don't know about that but it and the person injected it in had definitely interfered with my 1 and only vein that its easy to get blood out of. Poor GP managed to get blood but it wasn't easy and as he warned me it would be I now have a badly bruised and sore arm.

GP alsn has the problem that the consultant suggested amlodipine for my high blood pressure, but its not properly controlling it, its causing side effects and because of that he doesn't want to increase the dose. So now he has to find something else he can use that hopefully won't produce any unwanted effects, will actually do what its meant to and won't interfere with kidney function. So lets see what he can come up with when I go back.

But no results for any of it so far and no sign of an appointment with the respiratory people. Like I said not a lot happening.

Hope you're all doing better now, Morag

Hi Morag,

Sorry to hear you are still going through the mill.

Hopefully with all these latest test you will get some answers soon.

Also hope you get the blood pressure issue sorted out.

It is awful that you are still waiting for appointments.

Take care x

Oh I'm doing ok really, just waiting drives me bonkers. So does not knowing anything for sure! No more appointments set now apart from GP next week to see how his research on blood pressure medications got on and next visit to renal consultant in mid-September so I'm just getting on with things as much as possible.

Hope everyone else is doing ok

Morag my sentiments exactly.

But I must say I am enjoying a few weeks off of appointments.

Take care

Hi All,

Hope Summer has been good to you all. Sorry for not being in contact for about almost a month now. I was away on Holiday for nearly 3 weeks and it done me power of good. No Stress, and spent lots of time with my family. Back to work now, I am feeling tired again, but that seems to be part of the course, still..

I know exactly how you all feel with no diagnoses and this waiting around can really drive you crazy!

Luckily I was actually 100% diagnosed with chronic Sarcoid in June and since then funnily enough I have been feeling better/ getting better. I have got new CT scan end of August, new breathing tests in September, will meet my Lung Specialist mid September and Rheumatologist end of October. So they still keep an eye on me and hopefully this evil will go into remission soon and stay like that for long time. Now that I have an inhaler, I don't have the need to use it very often! Lymph nodes can still be really sore but I am use to that by now..

Hope you are all feeling better, wishing you health and strenght

Love

MM

MM, glad you were able to get away,,,,,think that would be the best tonic for all of us!

Your future appointments seem like a carbon copy of mine....

Hi everyone my names Lisa I'm 24 and just been diagnosed with sarcoidosis. Not to sure on what this condition is just been kinda rushed through it with the respiratory clinic consultant. I was given a load of scans and X-rays when I first went to a&e with swelling in my face, neck and eyes. Doctors though I had Hodgkin's lymphoma but my mediastinoscopy biopsy has came back saying sarcoidosis. I was given dexamethasone for the swollen lymph nodes in my chest but when diagnosed with sarcoidosis the consultant has changed me to 80mg of predisolone for 2 weeks then 70mg for two weeks then is back to the clinic does anyone get these doses and did yous get moon face cos my face and neck are huge and it looks like I have a camel hump in my back also the sweats are a night mare I have to sleep with a fan in my face to keep me cool. Needing some help does this get any better.