Oh Lylie, I'm so sorry to hear this.
It's unbelievable that she has gone so long without a diagnosis.
Please give Helen my love and I will pray that the new neurologist can diagnose and treat her.
Sending lots of hugs for her too, she must be very frightened.

Love, Doreen xx

It's no wonder you are angry Lylie, it sounds as if he was using guesswork to treat her.
She DEFINITELY should be referred to someone new now, and urgently I would think.
Is there no way she can get a second opinion from a different neuro department?
Praying for you all Lylie, especially poor Helen.

Love, Doreen xx

Lylie, my thoughts are with you and your daughter. It must be so distressing. You can get referrals to anywhere in the country now, could you not try to find a top neuro who specialises in difficult cases? I don't know where in the country you are, but I could see if anyone knows a good neuro near you, if you wanted me to? I really hope your appt on March 1st is productive.

Sending you love and hugs

Deb x

Dear Lylie,

I`m so very sorry to hear this news of Helen, and will say prayers for her and you, in the hopes you both get through this.

I`m with the other members who advise getting a second opinion somewhere else, even if it means travelling.Helen deserves a proper diagnosis, and a positive treatment plan, so let`s hope there is a good neurologist out there who can help her.

Take care,

Kathleen x

Lyliel, I am so sorry to hear of Helen's illness. The hospital in Queen Square is excellent, I have had tests there myself. It sounds like a second opinion must be in order, she cant go on like this. Many prayers and love to you all x

Helen wouldn't go if she did, Amanda, she's a fighter, which is why she has put up with all the in-patient treatment and stuff she endured last year in the hope that something will work.

She's a very gifted and highly qualified veterinary nurse, runs the practice and does EVERYTHING to keep it running perfectly, but yesterday the owner of a patient refused her access to the dog, saying she wanted someone "who wasn't either drunk or a spastic" to treat her pet. Helen always has a trainee vn with her as she is well aware of her limitations, and was devastated. She fled (it was nearly home time anyway),came home to me and wept for over an hour (she NEVER ever gives in to tears)

The reason she has accepted this referral is because her husband doesn't think they should push in , jump the queue, many others need help. etc etc....all very laudable BUt for the past year she has agreed to jump through hoops for this expert in CIDP and believed he knew what he was doing; now she HOPES a new face will see her and DO something. Every test she had has proved negative (MS< CJD<ME<MND< the lot) and no-one seems to know what is wrong or how to fix it.
Our Gp is fantastic and knows how bad I feel about her going back to the same place, but I suppose the choice is Helen and Darren's (I could KICK him and pray that he will eventually LISTEn to what his dopey MIL tells him.)

I feel so helpless, she is a married woman but she's still my firstborn, and my only daughter......................so I spent the afternoon making her favourite biscuits for her birthday (shopping's a bit difficult for me at the moment!!).........and now I am knackered too! Thank youi for all your lovely replies, Love Lxx

Oh Lylie, even as a bloke reading your posts has really upset me. I can only agree with the others about getting your GP to refer your daughter to someone else. I did 2 years ago I asked to see a different consultant about my colitis, my GP said no problem and did. When I saw him he set my mind at rest. I also admit that when my lady was ill we paid for her to go private for the initial consultation, I understand how people think about this but my lady came first I'm afraid and it was worth it to us as it reassured her when she most needed it. Thinking of you and yours,

John

So sorry to hear your news Lylie, I think Franky is right a second opinion is needed. What's this about queue jumping? It's got nothing to do with it, Helen needs the best and NOW.

Lylie I think there's nothing worse than when our children become ill, and knowing that one is powerless and unable to alleviate their pain and suffering. All we can do as mothers to our grown-up children is to be there for them, and to advise when we can. Helen is lucky to have such a caring and supportive Mum who despite her own physical health problems, is baking biscuits and worry naturally about her daughter. Agree the SIL needs a good kick-up the ..... and then hopefully he'll start listening to you.

Gentle hugs, and try and get some rest,

love,

Barbara
XXXXXX

Dear Lylie,

I've had some serious conversations with Him and have told him that it's about time he put you and Helen first in the queue!

You are very much in my thoughts and prayers.

Love from Ann