Frustrated

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Frustrated

Postby Jess1234 » Thu Nov 18, 2010 3:00 pm

Firstly I apologise in advance for another rant! I've just been really struggling recently with all the health problems I have going on. It's getting progressively worse and half the time I can't even leave the house. I'm sick of staring at the same four walls or not even being able to get up the stairs if I need the bathroom. I love being independant and now half the time I can't do anything for myself and so have to keep asking my housemates for help, which I really hate! I'm stressed about the uncertainty of it all and I hate being in this much pain all the time *cries* :cry:

Sorry, rant over! xx
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Re: Frustrated

Postby snail » Fri Nov 19, 2010 6:00 pm

Oh Jess :(

You can't go on this this, you need someone to look after you. I know you don't want to go back to India and I think you're right. Could you ask your local Social Services to get you some domestic help? They don't need to know you could go back to India, just tell them your parents are working abroad and are not able to care for you.

If you're too ill to do your course it will just have to wait. You have lots of time ahead of you, try not to worry.
These mountains that you are carrying, you were only supposed to climb.

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Re: Frustrated

Postby Jess1234 » Tue Nov 23, 2010 10:02 am

Thanks for your reply Snail. I don't think I can ask for any help until I've had a diagnosis. It's the same with uni, if I had a diagnosis I could get extra help with lectures, even get transport to uni but at the moment that's not possible.

I went to the Doctors again yesterday and the dr I saw said she could see I was really struggling but it may be a while before I get diagnosed as they don't have a very clear idea of what is going on! ](*,)
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Re: Frustrated

Postby Bel Bel » Tue Nov 23, 2010 1:17 pm

OMG Jess you poor thing that's so awful
Is there nothing they can do to speed up a diagnosis?
Is going private an option?
Are they still running tests at the moment? What's the next step?
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Re: Frustrated

Postby Jess1234 » Tue Nov 23, 2010 2:28 pm

I've got an appointment with a Rheumatology specialist on Monday but the doctor I saw yesterday said she couldn't understand why I'd been referred there when my Rheumatoid factor blood results had come back clear and I'm not having any swelling in my joints. She said it's likely I'll need to see a Neurology specialist at some point but they have 2 month waiting lists. I've been told to keep the Rheumatology appointment and just go from there.

Going Private isn't an option as there is just no way that I could afford it.
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Re: Frustrated

Postby Bel Bel » Tue Nov 23, 2010 5:15 pm

Well don't dismiss the rheumatoid because I have it and they took a year to discover it as firstly they wouldn't do a blood test as they didn't consider me a candidate and then when they did I didn't have the rheumatoid factor, in fact 20% of sufferers don't. I have no obvious swelling but one symptom I did get early on was tingling in my limbs at night and they wrongly assesed me as having carpal tunnel. I also get hot skin sometimes and apparently that is the fluids. Personally I can't see the swelling but sometimes other people notice it but not always.
The other thing is mine will usually be worse at night. I am only telling you all this in case you recongnise any of the symptoms yourself.
Neurology would definately be the next place to start looking.
See if the rheumatologist can get you an appoitnment quicker. He may be able to fight your case for you. Even a simple letter can get you further up the queue sometimes. Tell him how bad you have been. Might be worth starting to keep a diary of your symptoms too as often you forget things when you see the specialist. I found this really helped them focus on asking me the right questions.
I hope something gets sorted soon
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Re: Frustrated

Postby brfc » Fri Dec 03, 2010 7:41 am

Aww really sorry too hear about all of this jess really hope they do find out whats going on and get things sorted for you. always here if u need me take care

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Re: Frustrated

Postby Jess1234 » Sun Dec 05, 2010 9:44 pm

Saw the Rheumatologist on Monday who did a few tests on my muscle strength and watched me walk (which was painful!) and then said that he needed to do another blood test which looks at whether my muscles are inflammed... if they are then I have to go back to have a muscle biopsy, and if they aren't then I'm being referred to a neurologist... unfortunately I have to wait for the Rheumatologist to write back to me and then my GP can book an appointment with a neurologist if necessary and the waiting list is two and a half months ](*,)

I'm sick of this... I managed to let it all get on top of me today and ended up crying solidly for an hour... stupid huh!
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Re: Frustrated

Postby Bel Bel » Mon Dec 06, 2010 2:12 pm

Not at all stupid. You are living with this on a daily basis. Crying is a good release of those pent up emotions.
At least they are taking you seriously. Chase the letter after a fwe days. Make a nusiance of yourself so they wnat to get rid of you, if you see what I mean :P
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Re: Frustrated

Postby Jess1234 » Mon Jan 10, 2011 9:43 pm

Just thought I'd give you all an update, I saw a neurologist today and was diagnosed with ME (MRI results pending). I've missed so much of my course this year I am going to be dropping out and having a review to start again in November potentially. I'm being referred to physiotherapy to help get me walking again and hopefully to see an OT too. I'm relieved to know what I've got but now have the struggle of applying for Disabled Living Allowance so that I can afford to pay rent once my bursary stops. It's just all a bit stressful especially as I HATE forms!
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Re: Frustrated

Postby snail » Wed Jan 12, 2011 11:52 am

Well it's great to have a diagnosis, and ME is a relief, because at least it's not permanent. So good news really :)

And you won't have to go back to India. And once the forms are done, that's that.
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Re: Frustrated

Postby RagDoll » Wed Jan 12, 2011 5:15 pm

Have been keeping an eye on this thread and just noticed that you've been diagnosed with ME. I think I suggested it might be that in your other post in the physical section of the site.

I bet you're relieved to have a diagnosis? Just wanted to say (sorry that I am repeating myself) that my friend had ME and has made a complete recovery now so please keep your spirits up as much as possible! This is something that you can and will get over :)
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Re: Frustrated

Postby Jess1234 » Thu Jan 13, 2011 3:18 pm

I'm relieved that it's not anything more serious and that I know what it is (sorry that I split into two threads by the way!) The thing is that it's forced me to have an interruption from my course which means that as of tomorrow my bursary stops and I no longer have an source of income! I'm wondering if anyone has information on benefits as it's currently not possible for me to work.
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Re: Frustrated

Postby snail » Fri Jan 14, 2011 12:23 am

I don't know much about it but one of the members on here, Retrochav, knows a lot about this. I don't think he'd mind if you PM-ed him.
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