UCH DELAY

[JulianB]

Hello, I was diagnosed with MSA last year but a 2nd neurologist disagreed and thought it was most likely some form of autonmic failure. I was referred to UCH Queens in December but i can't get an appointment until October. Is this delay normal? It is very frustrating and we are in complete limbo. Meanwhile my mobilty is declining and my balance is shot

[5456partner]

Hi JulianB, so sorry you're having this long wait and that your mobility and balance are declining. My husband was diagnosed with MSA 18months ago and his symptoms are very similar to yours, plus a load of others. I don't quite understand why the 2nd neurologist disagreed, in my understanding MSA does affect most of the autonomic functions of the body and so it is a failure of these? Hopefully you'll be able to get more tests soon to clarify this. I'd get in touch with The MSA Trust if you have any questions, they're extremely knowledgeable and supportive. All the best.

[JulianB in reply to 5456partner]

Thanks - and yes will contact msa trust. Diagnosis for msa seems a bit random!

[Heartbrokengirl in reply to JulianB]

I’m sorry to tell you that so many doctors aren’t familiar with MSA. Autonomic failure is exactly what MSA is all about. Start checking your blood pressure randomly when sitting and then again when you stand up. I believe you’ll find that the drop in your BP is orthostatic hypertension and causing balance issues and can lead to falls. My husband is in the late stages of MSA-P and went through two brain surgeries due to fall related brain bleed surgeries. We’ve had to learn much of our information on our own. Look up the MSA Mission site and you’ll get a lot of good information. Good luck and take it one day at a time.

[JulianB in reply to Heartbrokengirl]

Thanks and I will

[Purplegoth]

Hi JulianB,

My husband is a little different as he has been diagnosed with Pure Autonomic Failure. Diagnosis was a few years back now, but prior to that he was referred to UCLH and was told the wait time for an appointment was 12/18months! Thankfully it was nowhere near that time, and we have to say UCLH have been fantastic.

Regards,

Purple Goth.

[JulianB in reply to Purplegoth]

Thanks- at least i am not unusual in having to wait so long!

[Monkeyfeet1]

so sorry.

I was first diagnosed with cerebellar ataxia but Queen’s Square diagnose with MSA which was then confirmed locally. Their wait times are long but can b e reduced if you’re willing and able to take a cancellation. Who is your consultant?

[JulianB in reply to Monkeyfeet1]

I was referred to Dr Ingle

[Monkeyfeet1]

i thought i could offer you a direct contact. But im unable to. The reservation team are useless so i suggest contacting your consultants team and speaking with them. All the best.

[JulianB in reply to Monkeyfeet1]

Thanks. I agree about the reservations team - they managed to book me into the wrong clinic first time round