appointment at The Walton

Everyday living
1

Hi y`all!

Tomorrow I go to The Walton Centre in Liverpool, for a follow up appointment, after being an in-patient for 6 days tests to find out why I cant walk…it`s only taken 22 years to get to this point!

The neuro is a very thorough chap…he`s done tests on a multitude of the rarer causes of immobility.

He did tell me after an MRI in the hospital, that I have significant demylination on my cervical and thoracic spine…hence he said it is rare spinal PPMS…my brain is clear. He also said I am only the 2nd patient he has ever seen with spinal MS.

He has sent me the results of all the tests he has done and they all came back negative…apart from the MRI and LP that is.

So I`ll get back to you soon with how it went.

Its a long way from where we live, but hey, its a run out!

Boudsxx

2

Hello Bouds,

I know Walton well. I was born in Fazakerley. Further down the road is the great Goodison Park. If you’re making a day of it, go into the city centre and have a bite to eat. There’s a great ethnic food shop on Bold Street. If you’re in a chair they provide a ramp. The hospital has a good name for its neurological speciality. Take in the local accent-I used to speak like that but had to refine it to be understood in the south.

Best wishes.

3

Hi Boudica,

Hope tomorrow brings some positive news.

One thing that confuses me is the term “Spinal MS” ?

I have lesions on the spine, and the brain has so far always come back as clear in all of my MRI scans that I’ve had over the last 6 years or so, yet my consultant has never termed my MS as “Spinal MS” or said that its a particularly rare form of MS ?

As far as I was aware, and have been told, lesions or demylination due to MS can be found around the nerves on either the brain or spine in fairly equal measures, one is no rarer than the other, but men tend to show more lesions in the spine at an older age.

Maybe I’m misunderstanding something ?

Just found this link regarding spinal lesions

https://www.everydayhealth.com/multiple-sclerosis/symptoms/when-ms-attacks-spinal-cord/

4

Bouds

Thinking of you and sending you a big hug. Please let us know how you get on.

michelle x

5

good wishes for tomorrow

6

I hope all goes well tomorrow

7

Thankyou everyone for your kind words.

So I got to The Walton in 1.25 hours…it has taken 2 hours before, so that was good. And we found a free parking spot! Usually it costs to park, so great!

My daughter met us in the OP waiting room…with a bag of pressies for Mum`s Day…She lives in St Helens and we live in Elland, so we dont get to see each other that often…

Have I told you she is my neuro`s PA?

Ok…down to the nitty gritty…

Dr Panicker…yes, I know, you couldn`t make it up…is a lovely guy…greeted us warmly. Me, daughter and sis were in the consulting room.

He asked how I was and I said ok…and thanked him for keeping me posted on the myriad of tests he carried out when I was in the hozzy in December for 6 days. Actually It was great in there…such a lovely hospital and the scouse staff were amazingly friendly…and funny without knowing it! Patients were lovely too…that`s for Steve!

Dont I go on?..get on with it Bouds…

So he said after all the tests he confirms the diagnosis of Spinal MS. I have no lesions on my brain…they are on the cervical and thoracic spinal cord.

Note to jactac…I get what youre saying about your lesions being spinal too....but this neuro at The Walton said it is rare and I am only the 2nd patient he has seen with it...??? I told him I knew of others with this and he said Yes, they are out there`…???

He said there hasnt been any new activity of demylination for a long time…I`ve been unable to walk for around 19 years or so.

He talked about the EMG test, which showed something on my ulnal nerve…Ive had weakened hands, particularly the left one, for the last 6 months and was very worried I may lose the use of them altogether. He says he doubts it very much and it is through leaning on my elbows as I sit.....not caused by MS! So note to self.....get off your elbows!` But being in a wheelchair for the day makes it a hard one not to do!

Then I asked about my deaf right ear…is it through MS?..he referred back to my MRI and showed me…no, it isnt! So maybe Ill ask GP to refer me back to Audiology. I did try a hearing aid about 10 years ago…didnt help, but maybe it will now…???

So, that concluded the appointment and I am discharged from there. We discussed referring me back to my local neuro…but to be honest, there isnt much point in that, or seeing an MS nurse…there`s still nothing different to give me or do…

So how do I feel after this marathon search for 22 years? Im glad I can finally tell anyone who asks, I have MS`…end of!

I know no-one would ever wish to be diagnosed with MS…but it`s tons and tons better than being told I have a genetic disease which carried a 50% chance of being passed down to my children and grandchildren…like when I was told I had HSP in 2011. That really made me hate myself.

Job done!

love Boudsxx

1 Like
8

Hiya Steve - we will see you next Monday night - up the Reds

9

Wow Bouds, you are lucky to have a specialist who seemed to have understood you and cared about what you said. My neurologist is just DMD focussed - as I’m not taking them - I don’t see or hear from her!!! You sound such a positive person - good luck with your future. Love and hugs. Michelle xx

10

Thankyou Micha.

I know a lot of people have benefitted hugely from DMDs, but when I learn about some of the evil side effects, it really scares me.

Boudsx

11

Hi Bouds.

Glad you got the info from this neuro you’ve been searching for.

I’m thinking maybe neuro’s use different terms to explain MS ?

I have an appointment with my neuro soon so I’ll ask the question regarding “Spinal MS”.

I did manage to find something online that mentioned "Spinal MS’, but to be honest it was the only site that I could find that used the term “Spinal MS”

https://emedicine.medscape.com/article/342409-overview

But hey, as we all know MS baffles everyone !!

12

Hi Polly

So glad the diagnosis has finally arrived for you, but I think a lot of us definitely thought it was MS years ago, but the little blighter kept hiding away from the tests. I know nothing changes for you but at least it’s a relief to have a definite name for it.

Take care

Pam x

13

Bouds, I take my hat off to you. I think if I had been messed about as much as you for such a long time re. diagnosis I’d be tamping mad (Welsh expression) and not be the easiest of patients.

You have remained equable (think that’s the right word) - you really are a heroine!

14

Hey crac!

Cheers for the vote of confidence me old mucker!

Boudsx