DOCTOR GONE FROM CARING TO NON CARING!

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DOCTOR GONE FROM CARING TO NON CARING!

Postby tracie1968 » Fri Mar 01, 2013 4:11 pm

Hi all :-) im new and not yet been diagnosed
My names Tracie and im 44

Recently I went back to my gp, I was diagnosed with crohns disease July 2012 I was put on prednisolone steriods and was on them for 4 months I also started azathioprine about 2 months before finishing the steriods.

Firstly I was first diagnosed with colitis a few years earlier and had been plagued with muscle pains and joint pains for years, I had read the colitis cud cause joint pains, so repeated trips to gp saying I still didn't feel well I was lightheaded and I felt like id been beaten up, for many years I felt like this only to be fobbed off by my gp with her saying the consultant at the hospital had said id only got colitis mild and it wudnt cause those syptoms, I was upset and annoyed and after 3 years on pentasta I still was ill, I kept losing weight and looked gaunt and pale, I was also not sleeping well regularly being woken with back pain or and acid reflux.

I decided I was not happy with my doctor and saw another at same surgery and we started from fresh and she referred me to diff hospital and after having the colonoscopy and endoscopy again I was diagnosed with Crohns disease and I had it quite bad not mild and I was put on the steriods etc.
I was told at the time that yes crohns wud cause joint pain and fatigue, I started gaining weight and my stomach probs toilet probs improved alot, but my other syptoms have not!
And after repeated chats with my crohns nurses they keep insisting that crohns does not cause muscle pain or dizziness lightheadedness, vertigo pins and needles etc etc.

So back to gp and I thought she was very good at the time, I wrote down all my syptoms that I was having at the time (this can be read on welcome page) and she referred me to Neuro
I was told by my gp that she and my Neuro thought id got ms and she sat holding my hand while I cried telling me if I needed her just to go and see her and to tell reception that she said she wud fit me in!
I left there with her telling me she had great faith in the Neuro and that she new him well, he had diagnosed and treated her mum for MND and that he was very good!
I saw Neuro on 10th Jan he examined me and said he thought id got 1 possibly 2 other things going on aswell as my crohns,
And said he was ordering me MRIs of brain an spinal!
I had these done 13th of Feb and during waiting time my doc still very good still said ms, I went back to docs on Monday as I still hadn't had results back from scans
And I asked her again if she thought ms and her reply "it must be what else can it be "
Then she said cud be a virus! Guillain barres syndrome she said causes ms type syptoms
Anyway she said she'd get on to hospital to get results
They came by letter and letter said
MRI results clear no patchy matter to suggest anything wrong blah blah
And all blood results ok, no signs of lupus or vit b 12 deficientcy or diabetes etc, I had alot of bloods done and only positive finding was slightly raised ESR levels.
So I was stunned! To say the least, I was sure they wud find route of my declining physical health and have answers!

But not!
So back docs I went yesterday Thursday in hope of answers! Only for my doc to be cold and off hand to me, I had to suggest fibromyalgia as my mum has it and it mimics ms too, and you get more wide spread syptoms also.
Her responses was ""big sigh "" oh ok will refer you to rheumatologist and I left there feeling like she thinks im making it up!

There was no apology from her about the ms and no reassurance that she wud sort things out either
Im sick of feeling like old person in pain all time!

She told me to talk to my cousin who has ms and that I should tell my family she said that I should talk my worries through with family and friends and join ms society forum, ALL of which I did, now I feel terribly down and deflated and have to wait weeks again for another appointment at hospital!
And I can't understand why Neuro didn't refer me to rhuematologist either!

My syptoms are all on welcome page as my post wud be too long! Please read and give me your opinions plz, thanks all in advance Tracie x
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby masonsbarms » Fri Mar 01, 2013 7:15 pm

hi Traci, so sorry you are feeling so bad,

first of all cant say yes or no to the question is it fm as we cant tell that ,

but please dont get to the point where you dont feel that your gp dosent care some docs dont understand fm and they get offish with us but at least she has refered you and not just fobed you of ,

please be releaved that it isnt ms as although fm is bad enough ms can be worse, dont get me rong fm causes enough on its own,

when you go to see the rhumy take someone with you who has seen how it affects you and write down all you symptoms and how your life has changed due to them, dont hold anything back even if you think its not worth bothering with,

your gp may have been having a bad day and didnt meen to be like that,

i hope you get a appointment soon and all gose well dont let it put you of going back to the drs in the mean time.

take care xx
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby tracie1968 » Fri Mar 01, 2013 9:41 pm

Thanks for your reply :-)
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby shazq » Sat Mar 02, 2013 9:05 pm

Hi Tracie

:fingerscrossed: You dont have to wait to long to been seen by the Rheumy and get some answers.

Like MB has said dont give up on your gp yet she has sent you for tests and been behind you, :fingerscrossed: the Rheumy will give you some answers and she will continue to be supportive.

If you do get the dx of fibro and your gp is not very supportive could you swap to the same gp as your mum? :goodluck1:
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby tracie1968 » Sat Mar 02, 2013 11:08 pm

HI :-)
Thanks, unfortunately my mum lives 25 miles away, hopefully your right and I won't have to wait long, and maybe my doc was having an off day so I'll see. Thanks, it's just frustrating and I feel I'll more often than not! Thanks
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby denys » Tue Mar 05, 2013 3:42 pm

:fingerscrossed: your appointment comes through quickly, maybe your doc was having an off day :dunno: but if you find she stays cold and unhelpful then I would consider changing docs or seeing if there is a fibro friendly one in the surgery if you get that diagnosis from the rhuemy
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby tracie1968 » Wed Mar 06, 2013 11:19 pm

Thanks, I saw my doc again on Monday and she said she will chase up rhuemy appointment for me do hopefully won't have to wait too long. Thanks
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby masonsbarms » Thu Mar 07, 2013 5:17 pm

hi, tracie, its good to hear your gp is chasing things for you ,

did you find her diffrent with you this time i do hope so,

is ther only your mum who could go with you a friend would be good as it you are like me as soon as you walk out i cant remember half of what was said

i take hubby to all my apointmens as i even forget somethings i should be saying,

i know its not easy for some people to get someone to go with them and i feel for them if thats the case take a pad and pen and make notes of the important things that are said.

i hope you are seen soon and get some answers quickly.

take care xx
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby tracie1968 » Sun Mar 24, 2013 11:43 pm

Thanks :-) ,im still waiting for rhuematologist appointment date!
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Re: DOCTOR GONE FROM CARING TO NON CARING!

Postby LouLou » Mon Mar 25, 2013 1:42 pm

Hi Tracie

I'm sorry you're not having much luck at the moment, it's the last thing you need at the moment. I don't know why your GP has been off with you, maybe she was having a bad day? Or something else could have been bothering her? I know it's no excuse for the way she made you feel though.

The NHS certainly doesn't rush things but I have everything crossed that you get to see a rheumy soon. Most of us on here were diagnosed by a rheumy so hopefully the one you see will have more answers and hopefully an official diagnosis for you. I remember how frustrated I felt before my diagnosis. I often felt like maybe I was imagining things, or that the pain wasn't as bad as I was making it out to be, or that I was just over reacting. To get an official name is a slight relief but then you find that there is no cure and it's all about dealing with things and learning how to cope with the illness.

Welcome to our forum anyway, you will get plenty of support on here!

Take Care
x
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