what the chuff next?

Everyday living
1

Hi gang, well get yourself a cuppa and a biccy or two, as this could take a while!

Yep, went for my neuro appointment this morning. I saw a new consultant…she looked about 15! First time I`d seen her…a fact she kept referring to, when certain things I asked flummoxed her!

Now I know some of you will empathise with the poor lady, getting a barrell full from me (in the politest possible way, of course).

I had gone expecting to get my probable PPMS dx confirmed. How foolish was I to imagine it could be that simple?

Oh, where do I start?

Okay, she made a reference to my dx of HSP, saying that it looked like that was more likely than MS !!! What?

Hubby and I looked at each other in shock! Then I told her what the previous neuro had said about the HSP dx being dismissed in Feb 2011. I also mentioned the 3 blobs on my 2008 MRI, which he believed were missed at the time.

Guess what? She couldnt find the tangible evidence of either of these things. She showed me the MRI, to look for the blobs.they werent there!

Hubby and i reiterated that we had been shown them. we felt as if somone was playing a cruel trick on us. Cruel is a word i`ve used before to explain my overall treatment. Still fits, doesn``t it?

Back to HSP.or spastic paraparesis. She said I do have it…tell me summat I dont know! Now for anyone who doesnt already know…spastic paraparesis is present in MS and many other neuro conditions…it just mean you have spasticity/spasms/poor or no mobility.

I asked her what type of MRI machine they have in Halifax.was it a T1 or T2? I could ask this cos of the post bobowen posted tother day about lesions not always being seen on these old giffers! I also asked if contrast was used. She said yes to my questions.

I added that I knew it can be very difficult, if not impossible, sometimes to see any lesions when a person has PPMS. She squirmed and said the MRI machine they use here does a good job. HUH!

Think I surprised her with my questions and remarks. Hubby was!

What else? Oh yeh…she asked if I would like to go for genetic testing to see if they can find the rogue genes which cause HSP…?

I replied with that I would find it stressful and upsetting, due to the 50% chance my children could develop it. What is the point of knowing something which could harm your kids, when there isn`t a damn thing anyone can do about it?

I

She asked if i would like a second opinion? Second? I`ve had umpteen!

I mentioned Dr Lily, in Leeds, who is a top bloke in MS. We left it that we`d see what, if anything, she can come up with and then think about genetic testing/Dr Lily at a later date.

So there you have it, guys. Ive got an even bigger ? on me ead now!

luv Pollxx

2

Oh Poll I’m so sorry. I felt sure you would get the PPMS dx today. I can’t believe that not only did she not give you a dx but she went back to the HSP dx. I thought that was done and dusted!

I think Poll that deep down you know it’s PPMS and not HSP. I think you know that one day a neurologist is going to tell you that it’s PPMS. Clearly. Once and for all. Without doubt. FINALLY!

I think anyone on here who has followed your story this far will be as seething with rage as I am on your behalf.

Hang onto to what you know Poll. The truth will out.

Thinking of you,

Lots of love,

Pat xx

3

Awe Poll, how dreadful, going for answers and coming home without the diagnosis you were given last time. You must feel like your going round and round in circles.

Sending you loads of (((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))).

I personally have had consultation with Dr. Lilly a very long time ago and he is definitely the man to see to answer all your questions. I know youve been round the houses but surely something concrete isnt much to ask when youve been full circle in the past and settled your mind you suffered PPMS. At least you felt part of a group of fellow sufferers. No matter what Poll, you are with us, us with you and are here to give you lots of love, support & care where we can.

You must be feeling so very frustrated and upset. I often feel like that when Ive seen someone in neuro too, as if its my fault.

Sending all my luv, no doubt others will tell you how theyve been messed around like you too, I know of quite a few still dangling luv, not that it helps you.

I hope you get answers very very soon and that you are able to keep them. As for genetics, we went down that route too (son) and guess what, nothing could be found, so question marks there too.

bren

xxxxxxxxxxxxxx

4

[quote=PatB]

Oh Poll I’m so sorry. I felt sure you would get the PPMS dx today. I can’t believe that not only did she not give you a dx but she went back to the HSP dx. I thought that was done and dusted!

I think Poll that deep down you know it’s PPMS and not HSP. I think you know that one day a neurologist is going to tell you that it’s PPMS. Clearly. Once and for all. Without doubt. FINALLY!

I think anyone on here who has followed your story this far will be as seething with rage as I am on your behalf.

Hang onto to what you know Poll. The truth will out.

Thinking of you,

Lots of love,

Pat xx

[/quote

Cheers Pat. You`re a pal!

luv Pollx

5

Hi Poll,

I’ve just re-joined here, having never got round to renewing from the old MS Society site.

I’m really sorry to hear about your problems with diagnosis. It can be helllish jumping through all the hoops can’t it?

I just wanted to re-iterate what Bren said.

When i was first Dx in 2002 I was passed from Dr Goulding (who i’d seen privately due to a crummy GP who told me the best i she could offer me was a referral to a York hospital neurologist with a potential wait of upto 9 months for an appointment (all this without telling me what she thought may be wrong so I, at 4 months pregnant at the time, thought I had a brain tumour and I would die before i saw anyone!)) to Dr Helen Ford at St James’ in Leeds.

I saw her for the first couple of years, then a couple of more junior doctors at my annual review (cue having to tell the same story of having to explain that I was pregnant at the time of Dx and yes i did know it was unusual to get diagnosed in pregnancy), after that several years of seeing Dr Lily. He is great, very knowledgeable, but approachable with it. I would heartily recommend getting a referral to see him.

I’m back seeing Dr Ford again at the moment who i would also say is worth seeing.

Anyway I think I’m rambling now!

I hope hope you ge t adefinitive diagnosis soon

Take care

Love Nicola x

6

[quote=alocin]

Hi Poll,

I’ve just re-joined here, having never got round to renewing from the old MS Society site.

I’m really sorry to hear about your problems with diagnosis. It can be helllish jumping through all the hoops can’t it?

I just wanted to re-iterate what Bren said.

When i was first Dx in 2002 I was passed from Dr Goulding (who i’d seen privately due to a crummy GP who told me the best i she could offer me was a referral to a York hospital neurologist with a potential wait of upto 9 months for an appointment (all this without telling me what she thought may be wrong so I, at 4 months pregnant at the time, thought I had a brain tumour and I would die before i saw anyone!)) to Dr Helen Ford at St James’ in Leeds.

I saw her for the first couple of years, then a couple of more junior doctors at my annual review (cue having to tell the same story of having to explain that I was pregnant at the time of Dx and yes i did know it was unusual to get diagnosed in pregnancy), after that several years of seeing Dr Lily. He is great, very knowledgeable, but approachable with it. I would heartily recommend getting a referral to see him.

I’m back seeing Dr Ford again at the moment who i would also say is worth seeing.

Anyway I think I’m rambling now!

I hope hope you ge t adefinitive diagnosis soon

Take care

Love Nicola x

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Hi Nicola, welcome back and thank you so much for your reply and kind words.

I did see Dr Lily years ago, at Pinderfields when he was but a registrar. It was in my early investigation days, when no-one knew what to do with me! They still don`t after many more years and tests.

If I do get a referral, think Ill take it up. Just been looking at how to get to LGI, via wheelchair and train. PA will go with me, as hubby wont drive to Leeds!

luv Pollx

7

Hi Poll, thanks just finished my malresers and coke! I was thinking about you today and am pleased to get an update. Sorry you didnt really get anywhere, but from what I know of you from here, you will still have come out smiling and cheerful cos that’s what you seem to do, well you keep me inspired anyway. As to the genetic testing I agree with you, I don’t think I would go for it either. Thinking about you. Cheryl:!

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Hi Cheryl, ta for your reply. I`m finding it a little hard just now, to come up smiling. I will later, maybe!

luv Pollx

9

Hi Poll

I am so sorry that you didn’t get any farther forward today, I was thinking of you earlier and wondering how you would be getting on.

I cant believe they are going down this HSP route again, I thought that had been “put to bed” some time ago.

Hang in there Poll, somebody will put all the pieces together, but at the moment I can appreciate you must feel like screaming.

Take care and try to keep smiling Poll (((hug)))))))

Pam

10

Oh for heaven’s sake!!! WHY can they not get their act together and actually DO something?

Really mad on your behalf Poll

(((((hugs)))))

Karen x

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Yeh, I know - it`s enough to make you spit, eh?

luv Pollx

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hi poll

i was wondering how you got on today too!

its just not good enough is it! the least she could have done is answer your question about the scanner.

im so sorry you are still no further on.

it doesnt matter how many times we see a neuro we still always go in with a little bit of hope dont we?

oh if only we were more sensible!

i dont know what else to say or suggest, you’ve done it all i think.

so im just going to send you lots of love xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

mandy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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Thanks Karen. Ive pmd you.

luv Pollx

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Thanks ever so much, Mandy. It helps when I know Ive got support here and it helps get it off my chest, so hubby doesnt get sick of hearing it.

luv Pollx

15

Dear dear Poll,

l,as you must know, do not have much, if any, faith in the so-called experts. l was first dx when pregnant with my daughter - 26yrs later before l saw another neuro and l have seen him twice since. So 3 times in 30yrs is 3times too many for me. Never been offered another mri after the original. Am l bothered!! No l’m not. -Just as long as you STAY on this forum - whatever they eventually come up with.

SAVE US FROM THE EXPERTS

l think Poll - the best medicine now would be a cream cake or chocolate bar of your choice. On prescription.

Frances.

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Thanks so much bren, your support means a lot to me.

luv Pollx

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Oh, Hell’s Bells, Polly. Hugs from here.

Alison

x

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Sorry you’re still beind messed about Polly.

Take care

Love Wendy

xx

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Hi Poll,

How blooming frustrating! I’ve PM’d you

Lots of love xx

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Hi Frances, thankyou so much for your caring reply. Im with you on the no faith in experts` gang.

Yes, I am self dosing on the chocolate and ice cream medicine…tastes really good. Not a bit bitter like some other meds I take

Ive seen 13 neuros in as many years and none of them are much good....not in my case any road. i dont mean to decry anyone who is lucky enough to have a good `un!

luv Pollx