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trishtrub

Rheumatologist visit!

9 posts in this topic

Hi all xx

 

I'm re-writing this so if it appears twice I must appologise, I did a spell check on the last one and it disappeared! Says a lot for my spelling! x lol x

 

Anyway I went to see my rheumatologist on Tuesday and once again came out feeling like I must be imagining all my symptoms!

 

My usual consultant had cancelled his clinic , so I saw one of his sidekicks! He was most concerned with my Raynauds because I am still having symptoms even though I'm on adalat retard twice a day, he has increased my dose so we'll see!

 

I told him about my aches and pains, including my arms feeling as though I have no strength in them, I explained that I can grip things but feel as though everything weighs a ton when I try to lift anything. He pulled me around and prodded me but said he couldn't really see what the problem was, he thinks my aches and pains are just wear and tear!!!!

 

The next thing he said was "this CREST thing is really nothing to worry about", class comment, my husband said perhaps he would like to try it!

 

The next thing was fatigue, he said my bloods don't show any reason for the fatigue, he suggested I went to my general practitioner and told her about it!!

 

I told him I had been having trouble with my ankles really aching at times and a ball like swelling at the front of both my ankle bones, he examined them and said he couldn't feel any swelling, by this point I was a little annoyed!!! I pointed out the swelling again and he said that yes he could feel the swelling and is sending me for a ultrasound to see if its related to my CREST.

 

 

At this point other than general aches and pains and terrible fatigue I'm not doing to badly, but am concerned that CREST is not taken seriously and that the support won't be there if there's any deteriation in the future, if anyone knows of a Sclero specialist in the West Midlands will they please give me the details.

 

Anyway I think that was about it for my consultation, next one booked for June!

 

Wishing everyone Happy holidays, keep warm x

 

Trish x

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Hello Trish

 

What did the doctor say?! CREST is what?! Oh my, oh my! Lovin' your husband's comment though!

 

CREST or limited scleroderma is a serious business as you know and I am a little perplexed to hear a dcotor say otherwise. Your idea to see a scleroderma expert is a jolly good one you can have a look at the list of scleroderma experts available on the Scleroderma Society website. Just bear in mind that the list includes various specialties so just pick out the rheumatologists.

 

Now let's deal with the comment about fatigue. Fatigue is a symptom of scleroderma of which CREST is the limited form therefore if you have limited scleroderma you will have fatigue. I talked to my rheumatologist about it at my last visit and was advised that as yet there is no real treatment for it, hopefully there may be soon.

 

Now let's deal with the comment about blood work. For some people certain markers can be seen in their blood work to indicate scleroderma or a predisposition to it, however, for some people certain markes are not present in their blood work. This is why a diagnosis of scleroderma should not be made on blood work alone but in conjunction with clinical symptoms. When I was diagnosed my blood work said there was nothing wrong with me but my symptoms said otherwise. Even now my rheumatoid factor is normal despite the fact that scleroderma is a rheumatic disease.

 

I hope your next visit is with a scleroderma expert and is a reassuring one.

 

Take care.


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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Hi Trish, sounds like you saw one of the registrars, who clearly has no idea about scleroderma. I suppose his remark about CREST being no big deal could have been his clumsy attempt at reassurance (I'm trying to be kind and understand the mentality of a doctor who would say that!) - but think probably just shows his lack of knowledge. I think his suggestion that you see your general practitioner about the fatigue takes the biscuit though! Think it is basic knowledge - something that the most junior doctors should know- that a very common symptom of connective tissue diseases is fatigue. My rheumatologist is not a scleroderma expert (although does have a special interest in connective tissue disease) but is competent! When I mentioned that I had been feeling very tired he was sympathetic and said that it is a problem for people with scleroderma but unfortunately no effective treatment available. Is your consultant usually OK? - if not think you should try to get referred to a new one!

 

Lizzie

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Hi Trish,

 

Indeed! In a nutshell, lizzie summed it up quite well!

Unfortunately, it is no consolation (to the patient), when symptoms are merely gleaned over, seemingly discounted.

In part, it also has to do with the delivery of such a statement, as was made to you...by the junior!

 

Both lizzie and Amanda spoke well to the fatigue aspect of Scleroderma.

While enduring pain and the symptoms we are plagued with, fatigue is a given.

It takes so much out of our bodies as the symptoms raise havoc.

 

As a result, if the symptoms can be treated, then it means that we will be able to get the much needed rest.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I hope it is OK to post here- if not, I suppose the moderators will save me the embarrassment.

 

I just wanted to mention the your remark about fatigue rang a bell with me. I had this weird sort of weakness without feeling very tired. It was helped when my rheumatologist did a blood test for vitamin D and found it low. I went on a course of supplementation and it did help with that weakness (feeling like my elbows were made of rubber.) I still have fatigue but not so bad at the moment too.

 

I thought I had the magic cure for awhile but have yet to meet anyone whose response was as dramatic as mine. But I felt it was worth a mention. Usual caveat about my not being a medical professional applies. :)

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Talking of registrars making off the cuff remarks, I saw one once (or she might have been a house officer) who, when I commented that my Raynauds had been worse than usual (and bearing in mind my notes say I have a history of infected ulcerations, Iloprost etc suggesting I have had a lot to deal with and have been through lots of treatment options), she asked if I had thought about trying to wear gloves to keep warm when it is cold. I was speechless!!!! I wear gloves in the middle of summer!


Susie

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Deary me, Susie you should have commented that you only see real doctors so could she return her costume to the hire company and send in the real one. The comment to wear gloves/keep warm is as insightful as a "may contain nuts" warning on a jar of peanut butter.

 

Take care.


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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Hi Amanda

 

I just read your message! Very funny! I am sure she was trying to be helpful, and she came across very sincerely but I just felt patronised. Just like at the age of 25 when an endocrinologist said to me, "I suppose you are thinking hard about children now - otherwise it will be getting too late." Where did he get that one from? I was not 35 and didn't look it either, looked younger than 25 if anything (still get ID'd). Pointless comment!


Susie

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Hi Trish,

 

Your comments on fatigue remind me of my first visit to the Rheumatology Department, I actually very briefly saw the head honcho ( I will not glorify him by using his medical title) who on the subject of fatigue said 'everyone gets a little tired sometimes' my blood still boils over when I recall that crushing off the cuff comment, fortunately I am now seen by one of the consultants who works under this 'Great man' and he is very understanding (suffers from Raynauds himself) and gives me as much time as I need to go over symptoms and ask questions.

 

Take care

 

Sandy B

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