Specialist visit.

[JCRy]

Off to see the neurologist today for our first visit post diagnosis last May.

Anything I should ask? Apart from medication adjustments?

Juliet

[Kevin_1]

Hi Juliet

Nothing I can think of as you say it is going through the symptoms and seeing about medication adjustments or new meds. for new symptoms.

You might ask about any trials going on, if you have a mind to.

Best of luck to you both.

Kevin

[NannaB]

Just ask whatever you want to know but be aware he/she probably won’t be able to give you anything positive. They may mention brain transplant, my husband’s did but he had already completed the forms. He had previously been prescribed medication when diagnosed but was taken off them during the first visit after diagnosis as there was no visible benefit. After very few visits to the neurologist he suggested he didn’t see my husband any more as he couldn’t do anything to help but made sure we had access to other therapists; speech, occupational, district nurse, etc.

XxxX

[Tippyleaf]

Agree with previous replies In addition have you had OT, Physio & SALT assessments if not ask the Neurologist if he can either refer or ask GP too

Hope the appointment goes well

Love Tippy

[JCRy]

All a little confusing!

I followed all your advice...Thank you. I have requested physio and speech therapy.

No drug trials, which didn't surprise me.

However, one big surprise...

The neurologist was surprised that Ian's legs have become so weak, yet his upper body is still strong and not rigid. He is sending him for more tests, with the suspicion that Ian might have Post Polio Syndrome as well/Instead of PSP/PD.

Ian had polio as a boy. Will keep you all updated. It seems the outworkings are pretty much the same...

No change in treatment was made.

And so we press on.

Thanks for your speedy replies.

Love

Juliet x

[AnneandChris in reply to JCRy]

Dear Juliet

So sorry to hear this latest possible diagnosis. We are all here for you. So, all I can say is keep on keeping on.

Hugs

Anne

[Hidden in reply to JCRy]

It may well be post polio. The only way to know if it is a neurological disease is a biopsy of the brain after death.

[Cuttercat]

Make adjustments now to keep him safe. Get a gait belt and have a wheelchair. A fall could add pain which you don’t want.

We are here to help you on your journey. Many changes will come but you can manage.

Cuttercat

[Nanny857]

Sorry to read about how your visit to neurologist went. Thinking of you and Ian. Lots of love Nanny857xx

[aliciamq]

The neurologist can write scripts for wheelchairs and such, too...

[Katiebow]

Very confusing for you both to be given an added or alternative diagnosis by the neurologist. Ben should have had 6 monthly checks on his progress but had to wait 18months. Ended up paying privately to see a neurologist of our choice who had a special interest in PSP and it's cousins as wanted sound advise on medication for ridgidness and pain and it was worth it as he changed it completely.

[AliBee1]

Hi. How did it go? Hope it was useful. AliBee x

[JCRy in reply to AliBee1]

Hi AliBee1,

Ian is being sent for more tests....possibly Post Polio Syndrome as well as/ instead of PSP.

Our next appt with the specialist is in May after the new test results.

Thanks for asking.x

[AliBee1 in reply to JCRy]

Glad further investigations are being carried out and that you have another appointment soon. Good luck to Ian xx