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yet another possible dx for me

Afternoon friends!

Well yesterday I received a letter.............my copy of one sent to my GP.

Now this IS gobsmacking!

15 months ago, I had an EMG test and the letter I got yesterday, gave the results of that test!

YES! 15 chuffin months ago!. When will i stop being shocked by what they do with me?

The neuro said the test showed no positive nerve damage, but he concluded that a `possible` dx is myleopathy!

So, of course, I looked it up on tinternet;

damage/compression/inflammation of the spinal cord.

So that`s another one to add to my growing list of possible diagnoses, eh?

I dunno...............................

luv Pollx

Hi Poll, 15 months !!! That is incredible no one should have to wait so long for the results. Do you feel like not bothering anymore with the medical profession, I wouldn’t blame you. Sorry to hear you might lose your respite fingers crossed it doesn’t come to this. Take care. Karen xxxx

Hi Poll,

             I am sorry to read that the medics have YET AGAIN increased the amount of fog that you have to wade through. I suppose that to keep your sanity you can only see these things as if you are an onlooker, as otherwise their confusion will drive you nuts.

              Best of luck with all of this Poll,

                                                Moira

Hi Poll,

Poor you, 15 months is one heck of a time to get yet another result of a test. I sometimes wonder about the NHS, I'm beginning to think they should rename it the NCC nobody cares centre!!

It must be so frustrsting for you.

Take care.

Janet

xx

Jeez Poll I can hardly believe it. 15 months!!! Well probably last thing you feel like doing but surely grounds for complaint!

On internet, are your other symptoms consistant with that dx? I still don't believe that's what it can be!!! How do you feel about it? Well as you say, you dunno. 

But 15 months Poll when you could have been having further investigation done!

Gobsmacked.

Thinking of you,

Love Pat xxx

Just googled it. Symptoms very similar to MS and esp to your symptoms Poll... mobility etc. On other hand letter did say 'possible' but my God you should have been having more investigations over the last 15 months!!!!

Pat x

 

15 months Poll, that is absolute rubbish!

Yet another possible diagnosis to muddy the waters. You must be so fed up.

Teresa xx

Poll, I've just had a follow up with neurogenetics and that was 14 months. I'm having a muscle biopsy in three months but don't get seen for another year. This is normal in neurogenetics as they can often only diagnose by waiting and watching to how your symptoms progress.

I'm in a very similar situation to you apart from I had optic neuritis which led to optic atrophy. I too have been going through it for 14 years.

Two years ago I had testing done for HSP. I can't understand why you haven't had any blood tests or genetic testing. Last year I had tests for neuromyelitis optica.

I found a great article about myelopathy but normal MRI. It gives all of the possible things it could be and should be looked at. A good friend on here managed to get the full article for me. If I can find it I'll message it to you.

Jacqui x

 

Sorry they are messing you about again Polly and keeping you waiting for such a long time. Sometimes makes you wonder whether they know what they're doing.

Take care

Love Wendyxx

Hi Poll

Incredible what next?

Love & HUGS, Mary

Cheers all for your replies. Yes it is rediculous. Would even be funny if I could be bothered to laff!

luv Pollx

Hi Karen, yes I do feel like not bothering. But they won`t beat me down! I keep bouncing back.

Regarding the respite place, I have lost it…unless I am dying and then they`ll let me go…not doing that…not for a long while yet!!!

I have applied for council funding for respite.

luv Pollx

Hi Jaqui, thanks love. Yes we do have some stuff in common. I have asked for genetic tresting, but dunno if I can be bothered really.

luv Polllx

Hi Poll, what next, hope you're holding up ok, take good care, Jean x