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Message From Neuroligist

Remember I said a while back that the GPs I had been seeing had all said to me I see you have been diganosed with MS?

But Neuro had not confirmed this.My doctors have been fighting for me to have the LP as soon as possible and had wrote to the Neuro and even called his secatary a few times and got no response.

Well my phone just rang and it was one of my doctors,the Neuro had just called her.His reply to her begging for me to have the LP was "I am afraid there is a six months waiting list and he could not get me an earlier appointment,the LP doctors would not budge on this"..

Then she went on to say "I am afraid that Charlie like all my other MS patients are in the same predicament and I cannot push any of my MS patients up for an earlier LP.".....

" I am sorry I did try"....

His admitance to my doctor is saying I have MS,no wonder my doctors treat me for MS and there words were that I had been diagnosed with MS....

Well never mind,I have accepted the fact that I have MS and know not to over do things and learning lots from this forum.It was no shock to me that I had it.I now know my doctors were trying to help and my Neuro did try also....

I am so greatfull to them all for trying as they know how much I am suffering.Oh well sit back and relax and just wait.

 

Thankyou everyone for being here and listening.

 

Charlie,x

Hello Charlie,

                       I'm so sorry that you had to find out in this way - if indeed you have found out. I have always found that life is so much better when we are allowed to know what we are dealing with - even bad news. But like you say, all you can do is sit back and relax. I am also in a similar quandry, as next week I have an interview at the DWP, but I can't get hold of my neurological psycholoigist, who was supposed to be accompanying me to this interview. If she doesn't call any time soon, I will have to cancel this interview. Good luck, and try to relax.

                               Best Wishes,

                                            Moira confused

Thankyou Moira.

It is frightening not knowing for defiante whats going on and why things take so long to sort out.I am  dissapointed that the Neuro could of said this from the start.My doctors said I had been diagnosed and I said I had not.My MRI results showed masses of lesions on the brain.

I am relived in a way as the waiting is terrible,I am just happy it wasnt a tumor or something worse.The physo said I had MS the OT called yesterday and said your doctor called and said you needed help as your MS is limiting your mobility.She also advised me I may wish to start looking for suitable disabled accomidation.Am I realy that ill,am I realy now classed disabled enough to warrant a move of home?

Most of this I can cope with but now to be classed as disabled is pritty hard to digest.I am a little shell shocked.Yes admitantly I class myself a little disabled but they are saying I am more disabled than I realised.

Then my GP phoning today,I just need a 100% answer,but I think I got confirmation today.

Charlie,x

Thankyou Charlie from Charlie.x

The only help I have gotten is off my GP,all other help like physio,Support worker I had to make many phone calls and was even threatened by social services that if I was not coping very well they would remove my daughter from my care.Frightening I must say.

My GPs got me an OT.Because my GPs are very concern with my limited function and ill health.

I will be making an appointment soon to check on the Baclofen dose and see if I need anything else or help in more ways.

The OT is now getting me a bed riser,bath lift,an adjustable stool and seeing if I can get another stair rail for the right side of my stairs.She is also telephoning my physio to see if she can help more.

So yes shell shocked but maybe things will start to look up for me and my girl.

x

Hi, well I`m glad you have your dx, I am not glad however, that it is MS.

For me I would welcome a dx of PPMS...............14 yrs of being shoved this way and that is long enough.

I found my LP to be very painful. If you can get dx`d without an LP then that has saved you some possible discomfort/pain.

I know not everyone endured pain when having an LP, but I sure did!

Now you know what you have, hopefully you can move on from the bewildering times of `what`s wrong with me`.

Look after yourself.

much luv Pollxx

Thankyou Poll.

Well I think personaly I have had my answer confirmed today.I think LP will confirm how egressive it is and or other problems that maybe occuring.

Yes I am not glad it MS I am just glad I have been told today,all this waiting is terrible for us all and we are not alone with this.There should be a better system and a faster one for diffrent types of illness.Its all head stress and dragging us down.I expect my LP appointment will be some time in July or after.I am just happy that my GP and others are realy going all out to help me and makes a BIG diffrence to me.

I am certainly NOT looking forward to the LP at all,I think knowing my luck it will hurt me badly.Then again I maybe suprised and it will be fine...

I do not want to move home,I love living here...

Thankyou all you are always so helpfull.

Charlie,x

Quite some time ago, when I got the initial HSP dx, I posted the fact on here and said maybe I should leave this site. I got about 30 please stay replies. Glad I did. It sure is one huge cyber family…but more than that, as I have many buddies and have met some of them too.

luv Pollx

Oh Poll never leave we all need support from time to time.It realy makes no diffrence what illness we have,a listening ear is always welcome to others and a little understanding.We all have gone through similar stress and strains trying to find out what is wrong with us and we all can relate to eachother,all we ask is a final diagnosis no matter what it is.

Thankyou Poll.

Charlie,x

 

Quite!

luv Pollx

angel

HUGS....