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steve67
10th February 2012, 15:43
In January I had blood taken to check my CK level and gave some blood for it to be tested for the defective chromosome 9 found in some familial forms of MND.This month I went for a MRI of the brain in which they injected me with a dye to give a better contrast.I had been given an appointment to go back to the QE Hospital in July but today I had a text asking me to go back for an appointment with the Neurologist on the 20 th of February.Not looking good as I know they have been looking at these tests to give an earlier diagnosis.:(

john
10th February 2012, 16:11
Steve ,
It is looking good if they have found something they can treat instead of something they can't.

Fingers crossed.

John

steve67
10th February 2012, 16:42
Cheers John
This has been going on for 2 years now and with my family history the fact that they have called me back early is obviously concerning.Have I got anything to gain from an early diagnosis,I doubt it as although at the moment I have something un diagnosed which allows me to get on with things.If it was a definate diagnosis of MND then the uncertainty is taken away and your mind set changes completely.

john
10th February 2012, 16:58
Steve,
thought you had a diagnosis but for some reason they were looking for other things. i thought emgs were the deciding factor and you don't mention them so just maybe there is something on the scan they have done.

John

pete
10th February 2012, 17:30
Hi steve

who are you seeing at the QE ?

pete

steve67
10th February 2012, 18:12
Seeing DR Pall.
I have had 2 EMG's the last of which showed some Neuropathy but of the Sensory nerves and not the Motor nerves.A lot of my problem is pain ie leg muscles aching, cramp like discomfort and electrical type shocks,stiffness.Muscle twitching for 2 years but have recently been away snowboarding which I was able to do but took it steady.I am on 300 mg of Pregabalin for the sensory pain.At my last appointment with a registrar neuro I was told to keep as active as possible.

steve67
20th February 2012, 16:01
Well after all the stress my Neurologist just wanted to talk to me about what had bee discussed with his registrar in January.One test result was back and that was a blood test checking my CK level which was 201 and according to him,the high end of normal.He would expect something in the region of 600/800 if something major was going on.He then went onto the blood that I had given for the faulty chromosome 9 o rf72 and informed be that the test was not yet ready for diagnosis purposes and was still in the research faze and would probably be 12 months or more.I don't think he is much of a fan for genetic testing where there is no treatment or cure for the illness as where genetic testing has been used for some conditions,this has lead to the person committing suicide.
He is now referring me to a rheomotologist for muscle and joint pain and I will see him again in July

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