Posted 02 November 2010 - 04:04 AM
Had a follow up appointment yesterday at the lung clinic, to discuss the results of a CT scan performed at the end of July. I knew through a recent visit to my general practitioner that the scan had revealed scarring, a liver cyst and adrenal hyperplasia, but no visible signs of lung fibrosis. but the consultant is still saying I have diffuse lung disease (due to lung function test results) and said that CT scans do not always show the subtle early changes, so I guess I have to go along with that diagnosis. On the plus side I don't have to see him again for another year and on the minus side he is referring me to an endocrinologist regarding the adrenal hyperplasia. He thinks it may be due to a rare type of adrenal tumour, so will have to wait and see on that score. Not sure if this is scleroderma related or in addition to all the other problems, but the breathlessness, dizzy spells and palpitations etc. could be attributed to this rather than the scleroderma. I'm not too phased at the moment, because it may not be a tumour, could be something else and quite frankly my brain is in denial and is saying you can't possibly have something else to add to the growing list of complaints, hmmmmm, now where have I heard that before!!!! I guess the worst thing of all about being told you may have something new is the long wait for an appointment to come through, I doubt if I will get an appointment this side of holiday.
I see the gastro doctor at the end of the month, the continuous antibiotics are helping with one aspect of my gastro problems, but on the whole I am still in discomfort and have many bowel issues, but I have put on a stone in weight over the last year with the help of supplements and now weigh eight and a half stone, hooray, I feel positively tubby compared to last year!
I'm due to see the rheumatologist early December to discuss the pros and cons of a bone marrow transplant. I know my gastro doctor feels this is the way forward and is trying to make this happen, but my rhuematologist once said of my chronic fatigue, `Everybody gets a little tired sometime', so I am not looking forward to this next visit and can't help feeling he is not sympathetic to my cause, but I am taking backup with me in the shape of my daughter!!! So as regards to a bone marrow transplant, that is anyone's guess and probably lies in the hands of the rheumatologist as I think this is his call.
On the whole, I know I am lucky, I am still managing to work part-time, get out and about and enjoy life as much as I can, so mustn't grumble, well not much!!! I know there are many of you that are house bound and quite disabled by this disease so I count my blessing every day and send best wishes to all of you and hope you can find some enjoyment in life and some relief from the discomfort and pain of this disease and know my thoughts are with you all.
Posted 02 November 2010 - 05:44 AM
I'm very sorry to read that you're having so many worrying health problems at present and that your rheumatologist is not more sympathetic. However perhaps when you are able to see the endocrinologist you may have a clearer picture of what is happening. I agree; waiting for appointments, particularly the first meeting with a new consultant is the only minor gripe I have with the NHS.
I do hope your appointment in December with the rheumatologist is positive; at least then you will hopefully feel that some progress is being made.
I shall be thinking of you and hoping for a really good outlook.
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Posted 02 November 2010 - 06:10 AM
I hope that when you ARE able to get into the endocrinologist, that said person is able to ascertain
the cause of your symptoms, as well as answer to the adrenal issue.
I'm glad that some of your gastro problem is benefitting from the antibiotics. By chance, have you been eating
yogurt while you have been on the anitbiotics? (It helps balance the flora in your body).
I'm glad to read you've gained a "bit" of weight, but I hope thata once you've seen the gastro, a way will be
found to help you gain more, even though I see you're already!
It really makes it rough when the doctors aren't on the same page, especially with regard to the bone marrow transplant.
My wish is the best possible decision for YOU. I'm just very glad your daughter will be joining you at your appointment...
It;'s always good to have two sets of ears to hear what is being said...and that moral support is REALLY great during
these times, too
If a person is able to work, or at least be around others, it really helps.
Despite all that is going on in your "health world" you have a wonderful attitude, which helps GREATLY with our overall health.
Please take care and keep us posted on how things are going?
Posted 02 November 2010 - 09:33 AM
I agree, at the very least you get to see another specialist (endocrinologist)...can never hurt to get another view point when things are not right, especially if your rheumatologist seems to be sitting on the fence somewhat which it sounds like he is. I hope it helps to sort things out for you and gets you on the right track for answers and healing. Try to keep us updated on hows things are going along for you.
Posted 03 November 2010 - 06:11 AM
Taking someone with you to the appointment is a very good idea. You could also consider seeing a scleroderma specialist if you aren't already.
Think what you want out of the rheumatology visit beforehand because the appointment should also be about what you want to achieve rather than what just happens when you get there.
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Posted 03 November 2010 - 11:51 PM
Sorry to hear that things are not going to well with you at the moment and hope that you eventually get the answers you need.
My own rheumatologist is one of those that sits on the fence so visits are generally a waste of time for me especially over the aches and pains and fatigue.
Posted 04 November 2010 - 08:48 AM
Thanks for the detailed report. You sound fairly upbeat, denial or not, so that's good! It's always hard to wait for appointments, and/or results when they throw the tumor word out there. I'll be thinking positives thoughts for you.
Posted 08 November 2010 - 09:27 AM
I just want to say hello, and send you a warm hug. I hope your rheumatologist is more emphathetic on your next visit. There's absolutely no comparison between being tired out and suffering unrelenting fatigue. I second Amanda's motion that you should make sure you are seeing a scleroderma expert, because they are the only ones who could properly advise for or against a stem cell transplant.
Anyway, here's that warm hug I was promising, in hopes you feel a tad better, soon.
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Posted 09 November 2010 - 05:14 AM
Sounds like an All Sorts bag of mixed news~ I can well imagine that the words 'possible tumour' weren't what you wanted to hear. Will you let us know when your appointment with the endocrinologist is?
It was interesting to hear that a doctor is advocating a bone marrow transplant for your fatigue. Has your white blood cell count been low? I've heard of that being done before, but not very often. How do you feel about it?
I'm with Shelley. There's a world of difference between being "a little tired sometimes" and the profound fatigue and exhaustion that it sounds like you are suffering. Wouldn't it be wonderful if we could, during an office visit, somehow link to our doctors and download just exactly how we are feeling? Hopefully, in light of the other specialist's reports and test results, your rheumatologist will do something to address the issue more positively. Not long to wait until that appointment, at least.
In the meantime, here's a and all my good wishes,
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Posted 10 November 2010 - 04:23 AM
Thank you all for your replies and advice, it is always good to have advice from people who truly know and have first hand experience of this disease. I generally count you all as being more experienced than some of the doctors I see. I say this because you all know how debilitating it can be at times and understand the ins and outs of it all.
On the whole I am feeling pretty ok with it all at the moment, I guess you learn to expect the unexpected with this disease and adopt ways of coping with it.I could be my own worst enemy right now and worry my self to death, but that would only add to my problems so I am keeping myself as busy as possible fatigue permitting, knitting mice (like you do!!!). Yes, you heard right, I have found a wonderful knitting pattern for Dickensian mice and I am Knitting for England. I know it sounds nuts, but they are such fiddly little creatures to knit that I have to concentrate 100%, so I can't possibly think about anything else,it is great therapy and fun.
Jeannie, since being on antibiotics my chronic fatigue has improved so much, but I have structured my day in such a way that every thing is done in bite size pieces and I stick to a regular routine of work, meals and rest and I think this is very important. The bone marrow transplant that my gastro doctor is pushing for, is to try and prevent my gastric and bowel problems getting any worse and is not so much intended to address the fatigue problems. I did see a chronic fatigue specialist two years ago and was told there was nothing he could do.
I do believe a positive attitude and a sense of humour is most important and a determination not to be beaten by this disease and I think this attitude has helped me to keep going even when there have been times where I have felt fit to drop. I work four to five hours a day and walk three to four miles to and from work and I think this has kept up my stamina. I do believe if I had given into this two years ago when the worst of the symptoms kicked off, I would be in a worse place now. And I have to say and this is a big AND.... this site has been of tremendous help, knowing there are people out there just like me that truly understand and are ready to give support, advice and a cyber hug has probably been the biggest help of all. So don't ever underestimate what a wonderful support network this site is and what wonderful people you all are, so hats off to all of you and thank you for caring,