Is treatment essential?

New diagnosis and before diagnosis
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I posted before and thought I’d do an update.

I asked my GP to refer me to neuro after a brain MRI found lesions. I wasn’t able to get an appointment before October with a neuro. Then I found out the neuro I was due to see had left and no one else in the practice deals with MS.

I asked my GP to refer me for a C spine MRI which again found lesions “suspicious” for MS. My situation is that the hospital my doctor deals with don’t have any neuros locally that deal with MS. The chain has messed me around so much cancelling and changing appointments that I’ve lost all faith in them. They booked me in to see a neuro. I turned up, he looked at my chart and said “Nope. I don’t deal with MS patients, only stoke and dementia”.

In America the way it works is that your GP is contracted to hospital chains. It’s like she works for Tescos and can’t refer you to Sainsburys.

There’s a really good MS clinic at a major hospital about 50 miles away but she can’t refer me there. I called them today and they said if I was to book today the soonest I could get in is November. I have to find a new GP to refer me but I can’t get an appointment with “Sainsbury’s” GP until the end of September. I can’t bypass and go to A&E as insurance here doesn’t consider MS a medical emergency so won’t cover the visit and I’d have to pay thousands and thousands.

At this rate, realistically the soonest I can get into a neuro is the new year. In the event that it is a MS diagnosis is treatment essential? I realise this is an ambiguous questions but I’m at a loss as to what to do. My husband even suggested I go home to England and try and get treated there. I’d never use the NHS but would pay for private consult but I’m not sure that the American doctors would accept a UK diagnosis.

Honestly I’m feel like I’m going out of my mind. I’ve spent the whole day on the phone trying to get in with a GP and ended up in floods of tears. :frowning:

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!!! I had no idea things were so bad in the US. Poor you. From what you say, it sounds as though the ‘Sainsburys’ route, delay-ridden as it is, remains your shortest route from A-B in terms of having your symptoms properly evaluated. The longest road is the one you don’t start on.

Delays are par for the course most places when it comes to getting to the bottom of troubling neurological symptoms (as you know all too well!) - that’s just a function of those kind of troubles regardless of the slickness or otherwise of the healthcare system. For instance, I had MS written all over me and the evaluation process went as smoothly as I could have hoped, but it still took 6 months for a definite dx and about the same again to get started on a DMD. I hope you can take some comfort from the fact that some delay is usually inevitable and that you do already have clinical and scan evidence to carry forward to a consultation with a new neuro, so you wouldn’t be starting from square one.

I am sorry that you have all this trouble at your door and so far from home.

Alison

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Thanks so much Alison. That does make me feel a lot better. I’ll just crack on with trying to get into Sainsburys :). And yes. Healthcare is a disaster here

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