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IS ANYONE EXPERIENCING THE SAME AS ME ?
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TOPIC: IS ANYONE EXPERIENCING THE SAME AS ME ?

Re:IS ANYONE EXPERIENCING THE SAME AS ME ? 8 years, 11 months ago #749

  • helen
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Hi Kev

Ever optimistic, we can only pray that some scientists think our predicament is worthy of some research - I can't find any at present!!

Thanks again for your thoughts, its nice to know someone is listening out there. I find it really hard when no one responds and get very low.

Best wishes Helen

Re:IS ANYONE EXPERIENCING THE SAME AS ME ? 8 years, 11 months ago #750

  • ann
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hi helen,
i hope that you will accept our apologise please .....in not answering you sooner

kim has not been able to read at all ....because of her eyes (itis's) thingy and believe me reading is her life.... and is quite upset about the fact that it has taken so long this time to ease up a bit

we know that when you feel that no one is listening...... that you can feel so alone
as we have all felt at sometime ..if you haven't felt like that then you are very lucky

I know that the doctor is busy at the moment as has said that she will be on the board as soon as she can... and i have had a flu bug that long i cannot remember being with out it... i do hope that this helps a bit for now...but please know that you are aways in our thoughts and prayers
ann

Re:IS ANYONE EXPERIENCING THE SAME AS ME ? 8 years, 10 months ago #753

  • helen
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Dear Ann
Thanks for your message. I am finding things very hard to cope with - everyday my body is going into uncontrolable spasms, pulling, wrenching and spearing my body. I feel totally out of control and I don't think I can take much more. My GP cannot believe that all my symptoms are caused by the arachnoiditis, she doesn't think it can travel from the base of your spine up to your neck and face and affect arms, chest wall etc. I know she's wrong because she can't feel what I feel and its so frustrating and demoralising. She has referred me to a Neurologist in January, but I don't have any confidence in the medical profession any more.....!

Thanks for your support - sufferers need this lifeline. Helen

Re:IS ANYONE EXPERIENCING THE SAME AS ME ? 8 years, 10 months ago #754

  • kev
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I get so annoyed with the GP(s) at my surgery too as not only do all of them know absolutely zero about AA, they make no effort to even find out the smallest detail about it so every time i visit it's simply a case of "Ok so what do you want? More tablets or back to the Ortho?". And the Orthopaedic surgeon in question claims to know nothing either!

I have an MRI due next month after badgering the Ortho to investigate to see if the AA has spread or if i have a new pain source further up my back where i am getting a lot of new pain and spasm. also get the Chest pain Helen.

It's incredible so many people suffer so severely and there is next to no research going on.

Re:IS ANYONE EXPERIENCING THE SAME AS ME ? 8 years, 10 months ago #758

  • kev
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Update to my situation. I had my MRI and they said there was no progression but that they found nerve compression outside the spinal canal. I asked if anything could be done and they said the nerve was enmeshed with masses of scar tissue and any attempt to free it would only damage it further.

This is all in the lumbar area but i am now getting lots of pain in the thoracic/cervical area due to the stretching of tissues/muscles in the lumbar area and the poor posture i have to endure. I now feel totally deflated, gutted as there appears to be no hope whatsoever for me on the horizon, only more pain and suffering and more disability. I have a daughter of 9 and a son of 4 who i adore but can barely play with. However, i know were it not for them i would not be here now. I still often wonder what the point of keeping on living a hellish existence is.

Sorry to be so glum.
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