Quitting the pursuit of diagnosis: What would you do?

New diagnosis and before diagnosis
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Hello everyone on the forum, I’m new here…

This forum has been very useful to me these past years, so a big thankyou to all that contribute to it.

Now, I hope you can perhaps share your insights on a tough decision I’m currently making. After two years of symptoms, gradual creeping in; fatigue, numbness, bowel and bladder problems etc. my neurologist is putting me through MRI’s and various tests…I’ll get to the point. Though we should never self diagnose my gut tells me its Primary progressive ms. Why? Because in these two years I have seemingly had no relapses or remissions and I seem to have a combination of symptoms common in PPMS.

I AM CONSIDERING DROPPING THE PURSUIT OF A DIAGNOSIS. My reasons being I drive for a living in London, I have two children 5 and 8. I have heard about the Nightmarish ordeal of dealing with the DVLA. If I get a diagnosis I don’t have skills to do much else.

For all I know it could be something else, BUT. IF I DID get diagnosed with PPMS, is it even worth it as there is nothing that can be done for the disease anyway!? From what I’ve read you just get sent on your way, And I would be forced to deal with the unsympathetic DVLA. There PDF Document says if its progressive you cant drive.

Whereas if I just closed the lid on this, then at least I could work a few more years until I knew I wasn’t capable anymore and then go for a diagnosis. Many of you probably think I’m mad. But I don’t have office qualifications or experience, and driving is all I know and I want to support my family as long as possible.

You could say, well it could be hundreds of other things. I know this. But somehow the way the symptoms are presenting themselves and in the combination I have them, ppms seems to be the closest match over anything else I’ve researched.

What’s the point in being diagnosed with something if the diagnosis works against you and they can’t do anything for it? And it strips you and your family of your lifelines. What do you think?

Thanks for taking the time to read.

James

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hi james

there is no valid, legal reason for DVLA to revoke your license. however lots of people with PPMS have found it still happens.

aargh!! as if you don’t have enough to cope with from ms, the DWP and the rest!

to be honest, i really don’t know what you should do.

have a good swear!!!

carole x

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Have a chat with your GP about this first.

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Sorry, I have no idea, but wanted to reply just to say that I really feel for you in this tough situation.

Alison

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Thank you for your suggestions guys. Any other points of view would be helpful. Are there any users here that did wait longer until they pursued diagnosis? James

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This is a really tough decision but don’t assume the DVLA will revoke your licence. I was diagnosed with PPMS last October and told the DVLA. They asked for information from my consultant at the time (I’ve since changed) who didn’t see fit to respond to them. After a few tries from DVLA (I was kept in the loop by them) they then went to my GP who responded straight away. They gave me a 3 year medical licence which will be reviewed and presumably renewed as long as I’m still fit to drive.

i understand your reasons for not seeking diagnosis but with diagnosis comes an ms nurse and, in my case, 6 monthly review with my consultant. As PJday suggested, have word with your GP.

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Hello James

The problem with the diagnosis of PPMS is that it does take years. It’s only after years have passed with no remission that PP could be diagnosed. Are your doctors confident (and/or are you) that it is definitely some variety of MS? Ie, have you evidence of demyelinating lesions and / or LP results indicative of MS?

I totally understand your wish to drop the fight for diagnosis. I think it’s soul destroying. And as you rightly say, there are no disease modifying drugs available.

But, the reason the DVLA revoke licenses is because they consider a person unfit to drive. I didn’t think there was a blanket ban on driving because of PPMS. But obviously I may be wrong.

If there is a blanket ban, you have an accident and it’s subsequently proven that you were aware that you may have PPMS, would that not be considered as irresponsible? Or worse.

All the best, I think you are facing a tough decision. And whichever option you choose, you can’t know if it’s the right or the wrong one. You’ll just have to trust your own judgement.

Sue

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Thank you for your thoughts Sue and moirah. I don’t want to put anyone in danger it’s just I feel capable of working still and hopefully will continue that way. I understand it takes a while, but want to hang in there with work as long as possible. Any other ponders still driving, or that haven’t had much problems with DVLA? James

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Sorry that was supposed to read, any other ppmsers still driving and not had probs with DVLA? James