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Update

ally1

Expert
Messages
5,402
Location
suffolk
Type of diabetes
Type 2
Treatment type
Tablets (oral)
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liver
Not an awful lot to say but all tests from MRI and tongue biopsy s have come back clear.
Am glad though now back to square one. Though the ataxia part still stands.
Been discharged from neurologist and oral people.
So don't know what to do.
 
ally1 said:
Not an awful lot to say but all tests from MRI and tongue biopsy s have come back clear.
Am glad though now back to square one. Though the ataxia part still stands.
Been discharged from neurologist and oral people.
So don't know what to do.
Click to expand...

Thanks for the update, Ally. I'm pleased there is nothing sinister going on for you. That's naturally always going to be in the backs of our minds at best.

So, whom are you still referred to? When are you next at your psych Doc?

Do you feel up to getting back in front of the better GP you saw reecntly? It'd be good to discuss it with someone, I think.

I know when I've had "all clear" tests, it's always a relief, but have found that over the next few days I've become more frustrated with it all.
 
I agree with DCUKMod.........at least they have discovered a few things it isn't and maybe time to discuss with the nice doc as to where do you go from here.......
 
Hi @ally1, 2 down but more to go it seems.
I assume the MRI was to check brain structures like organ of balance and co-ordination centres (cerebellum)?
Very glad for you the tongue biopsy was clear.
Anything about sleep studies, sleep apnoea?
I imagine the neurologist went through family history with you to see if anyone had ataxia or similar?
And did you GP or the neurologist check your BP laying down and then after standing for 5 minutes to see if there is some fall in BP after standing that long? (it might fall at first but usually steadies, that is why the need to wait for 5 minutes to make sure)?
Some docs might get impatient about the 5 minutes but to be sure my specialist does the 5 minutes.
Apologies for all the questions but just trying to make sure of what has been looked at and not.
I know it seems like a marathon (or a very slow 'game' of skittles) but we are all barracking for you.
 
I, m not due to see the psych until March. When I saw him in December, he urged me to report gp/surgery to the CQC. He has given me until I next see him, then if I haven't, then he will do it. He feels I am not being looked after and also the surgery have failed to do any of the things that he has requested in the past.
 
satindoll said:
I agree with DCUKMod.........at least they have discovered a few things it isn't and maybe time to discuss with the nice doc as to where do you go from here.......
Click to expand...
At the moment, I have given up
 
Strangly the neurologist never asked about family. He did do the blood pressure and all OK there.
The MRI was done to check my head for any trauma and to check my spine.
Sleep wasn't mentioned
 
ally1 said:
At the moment, I have given up
Click to expand...

Ally - Would you consider calling your psych's secretary and tell her the results of your tests and tell her how you are feeling?

I must say, this guys seems like a real keeper, but I can understand how you might find the reporting thing difficult. Don't whatever you do put the fact you can't face reporting your doc stop you ringing the psych. I'm sure he'll be half expecting that to have been the case, but likely wanted to give you the opportunity to do it for yourself.

I can remember when the Endo ordered up about 30 tests; all of which came back clear, and how my reaction was "That's just not fair!". Irrational - those tests were for some very scary things and I wasn't chuffed to be clear of them all? It wasn't that. I just felt, I was getting nowhere.

Ally, you need some support just now. Asking for some support is not a sign of weakness. It's a sign you are strong enough to recognise it.
 
I will call the psychos secretary tomorrow like you suggested.
Am glad there's nothing sinister show up, but theres something going on. Its got to the point now, where its affecting me mentally, not good bipolar wise also the past few days I think sod my diabetes.
 

I know Ally. Sometimes we have to be so dogged about getting to the bottom of things. We shouldn't have to, but we do.

I'm sure you'll feel better when you've told somebody in the loop. It's tough sometimes.
 
@ally1, I know each set of specialists and investigations sets us up for hope and then disappointment.
But it is a bit like detective work. There will be promising 'leads' that fizzle and other ones to be found.
Tell the 'good' GP about any family history of ataxia, what mediations past and present you have been prescribed in case something rings a bell regarding ataxia as a side -effect , and please mention any sleep troubles and ask whether you could have Obstructive Sleep Apnoea (OSA) looked at with a sleep study.
Whilst the set-up for the sleep study is a little finicky, (you have wires attached to your head, arms and legs, chest I seem to remember) but you get to sleep through the test - not something done with most other tests !!
And if OSA is found there are things that can be done for it!!!
Having OSA myself I would not be suggesting it if I did not think it important to raise with an understanding GP.
Whether a sleep breathing problem could explain the ataxia I do not know.
But one never knows when something unexpected will happen.
Best Wishes on this arduous journey of discovery and please seek support from your psychologist as you need it.
 
ally1 said:
At the moment, I have given up
Click to expand...


Please don't give up, the world is better with you chipping in and helping people like me, when I was first diagnosed you were clearly someone who chose to take the time to be supportive and wise in your words.

Thankyou
 
Ross.Walker said:
Please don't give up, the world is better with you chipping in and helping people like me, when I was first diagnosed you were clearly someone who chose to take the time to be supportive and wise in your words.

Thankyou
Click to expand...
I am around mire now, the forum must have been quiet while I was hiding away.
 
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