well here we are guys! result!

Everyday living
1

Good evening one and all.

WelI`ve been to my 14th neuro appointment this aft.

So, right, let me get my words together. This could be a lengthy post.

Sis went with me for morale support. I was feeling more anxious than at any other appointment. Expected to be annoyed, upset, mad, etc.

BUT I am relieved to be able to tell you that I felt none of those emotions. In fact typing this, I actually feel quite calm.

Id asked other folk who had seen that particular neuro and wasnt too happy with what Id learned. BUT I would now tell anyone who is going to see him, not to worry.He was attentive, interested, kind and very patient.

We discussed my recent LP and agreed it was normal.

Then he began reading through my notes from 1998…he did gabble a tad, but only in a way to get up to date. I told him of my concerns with a 2008 MRI and the 3 blobs I was shown in 2010. We looked at the scans and we discussed them at length, and the fact that even if they were there (but they werent again), no others were seen on a later scan.

Then we talked about Spastic Paraparesis. He said I do have that, but the cause is unknown. He gave it an extra word…idiopathic. He said all that meant was We dont bloody know!…his words! He said it is a diagnosis which is fully acceptible should I need to quote it for any legal documents, insurance and the like.

After a bit more conversation, I asked him outright…Are you saying I DEFINTIELY have NOT got MS? He said yes. he also said as the top MS doc in Leeds, didnt feel MS was a possibility, then it isn`t.

Next we talked about HSP and genetic testing. This became an in depth conversation. He said as I have no family with the same kind of problem, it would be difficult to get the testing done. Then I told him that I wasnt brought up by my birth father and have had no contact with him from the age of 3. Ah! he said and began to write notes. This makes it very different. if you do want to be tested, then you would get it, no problem. Mmm,now I was feeling more muddled again.

Do I want testing…dont I want it???

Sis chipped in here and between the 3 of us, we came up with this;

I will not go for testing. I will make sure my 2 daughters understand whats what. I will leave it up to them to decide for themselves and their children., should they have any concerns about mobility problems in the future. If that did happen, they could see a neuro and say, my mum had similar problems and HSP could be the cause`.

Currently, there are around 30 known genes which cause HSP (hereditry spastic paraparesis). Testing does not look for them all…too expensive! But there are other unknown genes. Doc said he reckoned in another 10 years there would be 60!

This means if I tested negative, it could be wrong.so what`s the point in having a result, that isnt 100% right?

So, there you have it. I will no longer wonder if I have MS, but will just have to accept, that I may never find the cause of this problem.

I will stay around with you all, as I dont wanna leave you! Youre all a big part of my life now. Oh, chuffin `ell, pass me a tissue!

lots and lots of love, Polly xxxx

2

Hi Pol- glad that you finally got a more clear explanation of everything and glad that your consultant spent the time with you and went through everything. After so many years of wondering you must be a little relieved in one sense to now know what it is and to know that it’s not ms. I’m so glad that you’re not leaving the site - what would we all do without our polly! :slight_smile:

3

Hi

Wow, what emotions you must be feeling.

I am feeling your relief? is that it? Because you were listened to, treated with respect. I am very very happy this happened for you, esp after the dismissive neuro.

Glad you are not going anywhere, whatever it is that is ailing you, Poll, it sure as heck is an MS mimic.

Do keep us informed of your journey.

S
xx

4

Hi Poll, well it sounds like that went ok, tbh I think you have as good an answer now as you are ever going to get. You have made your decision about testing for hsp and that sounds like a good decision for you and your family. For what it’s worth I think that if I was in your shoes I would have made the same decision. Cheryl:-)

5

Hi Poll So pleased the neuro took time with you and you have come to the decision you have come to. You have been on an emotional roller coaster for so long and I hope now you feel you have been treated with the understanding you so deserve. Take good care and have a lovely sleep tonight. with love Linda x

6

Hi Poll,

I’ve been checking in regularly for your news!

I’m glad the appointment wasn’t as bad as you feared. Still not a 100% answer, but I suppose, in a sense, a step forward, as he was prepared to say what you definitely DON’T have.

I know you were in two minds about having the genetic test anyway, so perhaps it has worked out for the best, but I’m amazed there is such a fuss about the cost of it. I do think the NHS should be mindful of money, of course, but if a patient couldn’t get a diagnosis in 14 years, and there’s a test around that might help, I wouldn’t have thought it should be TOO hard to justify. Perhaps part of the rationale is there’s no therapeutic benefit in knowing, because there’s no treatment they would propose, that’s different from now. If it might have changed what should be done about it, perhaps they’d have been more proactive.

A shame estrangement from your natural father means you do not know whether he, or any of his immediate family became ill. But again, perhaps it’s all for the best. If the answer was “YES”, you’d be drawn to the unavoidable conclusion it was HSP - which is the news you don’t want.

Do you think today’s outcome is one you can live with, and not feel the NHS is still failing you? It sounds as if the way would be clear to have the genetic test, if you ever changed your mind, and felt you wanted or needed to. It’s good to know that if family circumstances ever changed, or your collective feelings changed, the testing option isn’t closed forever.

I very much doubt there’s a dedicated forum for Idiopathic SP, so looks like you’re stuck with us! In practice, it seems similar enough that there is common ground with many here. And I suppose, medically speaking, it is pretty similar, just different underlying cause.

I hope you rest a bit easier tonight. At least he was honest, and patient, and no sign you have been blacklisted as you’d feared - or not by him, at least.

Luv,

T.

xx

7

Well finally Poll you had someone who actually took notice and told you exactly what the situation is. No more ‘do I don’t I’ and no more having to visit every neuro north of Watford Junction.

I think your decision on genetic testing is spot on.

Hugely relieved that you are not leaving us or I would have had to zoom up the motorway on my scooter and give you a good talking to!

Cheers Poll (mentally lifting a glass to you my friend).

Pat x

8

Hi Poll, glad you had a positive appointment with the neuro. I know you still haven’t got any definite answers but at least you know what you haven’t got. To have the genetic testing or not must have been a hard decision but from what you have said I think it was the right one. You sound as though a weight has been lifted from you and I am so pleased. Don’t you dare go and leave us, who would make us laugh and smile so much if you went? Take care Poll and thank you for letting us all know how you got on . Sending love and hugs Karen xxx

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Hi Poll, Really pleased that at long last you have had a positive appt’ and now know that you haven’t got MS. You mustn’t leave us as I just love your way of speaking and oh boy I know I can speak for most of us we’d sure miss you if you stopped posting. As the others have said at least you have the option if you wanted the testing option.

Sending (((((HUGS)))))

Janet

x that’s what you are ‘our’ little angel

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At least you have a deffinate answer after so much to-ing and fro-ing, so I hope that’s some help to you. I think I would have reached the same conclusion about the testing too.

Glad you’re staying around Poll. Take care.

11

I am so glad that this neuro gave you a decent explanation and the time to properly discuss things! About bloody time!!!

I guess it’s easy to accept that we don’t know everything about the brain and neurology when it doesn’t affect us personally, but I can imagine that it is nowhere near so easy when it does :frowning:

For what it’s worth (probably not a lot!), I completely agree with your decision. One of these days we might be in a position to work out exactly what’s caused your Spastic Paraparesis, but until then there seems little point in putting yourself and your family through any more stress.

I hope this wasn’t too much of a blow - at least you know you’ll always have us on here, no matter what the neuros say :slight_smile:

Karen x

12

Poll you might not have MS but by gum (a bit of Yorkshire for the weekend) you light the way for many of us. Your posts are a joy to read and the way you approach your challenges with good humour often make me look at my own situation with new eyes.

Lots of people may be dreading the arrival of a wheelchair in their lives but you quietly share the good things that can still happen (like giving grandchildren a ride) I’m sorry that you don’t have a definitive answer but I’m delighted that you will stick around here – what would we do without you?

Jane

13

I can’t add anything to the lovely replies you have already had Poll but we don’t want you to leave as you would leave a massive hole here

Why? Aww - cos we love ya Poll.(more tissues please)

Teresa.xxx

14

I am so glad that this neuro gave you the time and respect that you are surely due Poll. It sounds like he listened to you and explained things to you. It looks like you have finally reached the end of your 14 year wait. I’m not sure if I’m right but it seems like you are relieved by all this. I’m glad for you. I think you have made the right decision about the genetic testing and you can leave it in the hands of your girls to get tested if they feel the need! I am so glad you are staying around. That’s what we all wanted! Hurrah! Love Teresa xx

15

Oh Poll,

Told you we’d all be there to support you. Sounds as though the neuro was nice and you could ask questions and get

some answers.

So pleased for you that you don’t have MS but we would all be very upset if you left this site. You can be an honorary MSer! You give so much support and inspiration to people.

Hope you had a stiff drink last night (or strong cup of tea) and that you can now look forward instead of back.

love

Jen x

16

Hi Poll

I am so glad he listened to you and didn’t rush the appointment. I

understand where you are coming from with the genetic testing, and

I am so glad you are staying, who else would brighten our lives.

Pam x

17

Oh Poll, thank goodness youve got a diagnosis of spastic paresis now, and even if you do have HSP, then youve done your best, told your girls and they know it has been voiced and may perhaps be your actual diagnosis, but Im with you, if its not 100% then perhaps disappointment may follow even if you have it. Its good your family know if anything shows later and they need diagnosis, which I hope god forbid they never do.

In one way youll be sighing with relief, but sounds like your cards have been put on the table and this neuro fully understood your dilema and has finally put you out of your misery and given you a label, which helps a lot.

Yes do stay around, you have mobility issues and similar symtoms daily, plus what would we do without your humour and daily antics making us all laugh and cry together!

LOL bren

xxxxxxx

18

Hello Poll,

I am feeling pretty confused about your neuro’s words, no matter how nice he might be. I just hope that this appointment can give you some sort of closure to the ‘MS ROOM’ any way, but I just hope that you can relax now while the news seeps in. But most of all, please stay with the forum, as we have all caught POLL-ITIS and there is no cure!

Lots and lots of love,

from Moira

19

So happy for you Poll, stay with us all, and Moira is right we all have POLL-ITIS… lol.

Best wishes and lots of love

Jan xxx

20

Hi Moira, ta ever so for your reply. But why do you say you are confused by the neuros wrods? Tell me and Ill see if I can explain it more clearly for you love. PM me if you prefer.

luv Pollx