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Do I have anything to gain from diagnosis?

Hi,

I was diagnosed with CIS about 2 years ago and have been having relapses in the past year. I went to see a neurologist yesterday hoping for some kind of treatment to help. He wants to send me for another MRI to confirm MS, but after reading through all the treatments…they sound awful! Im currently a Taxi driver and will probably have to stop doing so after a diagnosis. My question is: Is it worth being diagnosed? It just seems I have nothing to gain and everything to lose for a treatment that sound worse than my current symptoms.

Im just stressing out a bit as I have 4 kids and a big mortgage 8-(

Hi

85% of people diagnosed with MS have relapsing remitting MS. If you are diagnosed with RRMS, then you can get a disease modifying drug which is designed to reduce the number of relapses and reduce the severity of this relapses. If you want a DMD with as few side effects as possible, then you could go for one of the older DMDs like Copaxone, you inject subcutaneously (just under the skin) 3 times a week. It has few side effects but only has on average a relapse reduction rate of 30-35%. Or Plegridy, an injection once per fortnight, side effects being mild flu type feeling, but only for a day or two. An equal relapse reduction rate.

If you go for one of the more efficacious DMDs then you run into the risk of more side effects.

If you think you’ve had relapses that have given you symptoms which have improved over time, a diagnosis of MS is likely to be RRMS.

If that’s the case, then assuming you are diagnosed, at least if you opted for one of those two drugs, you’d be getting some protection from relapses but with little chance of bad side effects. It could keep you living your life well for longer. I would suggest that if you are drug averse because of potential side effects, then one of those drugs is the middle ground. There is absolutely no reason why you’d have any problem continuing your job whilst taking either of these drugs.

Obviously, there are other drugs that many people manage to take and continue their active working life whilst taking which have better relapse rates but run the risk of more side effects, such as Tecfidera. Actually, there’s probably no reason why you couldn’t continue your job whilst taking any of these first line drugs, it’s just a case of managing how you take them.

However, if you think that the MS type symptoms you’ve had have stayed with you and not remitted (or got better), then assuming you get a diagnosis of MS, it could be progressive from the start. Don’t forget that only about 15% of people get that diagnosis though. In such a case, you could decide that living in ignorance of any potential diagnosis is preferable at the present time. There’s no reason why you can’t change your mind no later after all.

But, assuming you do in fact have RRMS (given that you’ve said you have had relapses), actually you might have more to lose by not being diagnosed. If you live your life with RRMS and no DMDs then you run the risk of damaging relapses.

Sue

Thanks for your reply. It does sound like RRMS as im fine for 80% of the time, unfortunately when im not well ususally conicides with weekends and thats where I earn my wage. Ive read that after a MS diagnosis I need to inform the DVLA and then my local council who Licence me as a taxi driver. Im just worried that Ill be refused my licence on the grounds of MS and the safety of passengers etc

I am so sorry that you have this heap of worry to deal with.

If you do have relapsing/remitting MS, though, then you might as well know so that you can start a disease-modifying treatment to help keep you as well as possible for as long as possible. I know they all sound horrid and they are pretty hard-core, but then they do have a tough job to do. Please believe me when I tell you that (in my own experience, at least) they are a picnic in comparison to poorly-managed RRMS, which can be a very nasty and brutal business indeed.

I know it is very tempting to try to wrest back what feels like some control of your life by declining to dance to the tune of the medical juggernaut. But if you’ve got MS, then you’ve got MS, and it probably isn’t going to leave you in peace for long. Sometimes the best way of taking control is just to look the beast in the eye - then at least you know what you’re dealing with and can start doing so. However impossible it all looks (and it does look impossible, I know) you will find a way to deal with whatever comes along. I know that sounds a truly fatuous and nonsensical thing to say, but it is also true because that’s just what happens.

I wish things were different and easier and I really feel for you.

Alison

Thanks Alison, im sure your right. My Dad has MS before he passed away a few months ago and watching him go through it for years was tough. He was also a Taxi driver (we are clones im sure) and his taxi licence was revoked, although he had progressive MS if thats the term. My job is my biggest worry, once thats ok i can worry about me. Thanks for your replies

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You might find if you get an MS diagnosis that you are perfectly OK to continue driving for a living. Have a look at this: https://www.gov.uk/driving-medical-conditions/telling-dvla-about-a-medical-condition-or-disability Once I was diagnosed, I notified the DVLA, at the time I was driving all over the country for work. There was no problem with the license, its a bit of a sod having to reapply every 3 years, but so long as you are able to drive an unadapted car, there is absolutely no reason why you’d have to notify anyone other than DVLA.

Sue

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That is so tough for you. If you do have RRMS, you’ll have a lot more options that your father had to stay well, but you know all that, and I don’t suppose it helps much right now.

Does your licensing Local Authority’s website include information on their medical requirements for taxi driver licences? Again, whether the news is good or bad or something more complicated, you might as well know.

Alison

I have to complete a Medical exam every three years anyway, after my first episode I had double vision for abut 4 weeks which went away and has never returned. I passed my exam after that with my own GP, i just dont know if theyll look at it differently with a diagnosis. This is what my Taxi driver terms and conditions say about Medical exams etc:

  1. The driver shall, every three years, produce to the Council a certificate signed by his registered medical practitioner, to the effect that he is fit to be the driver of a Hackney Carriage. He should come to this decision using Group 2 standards for vocational drivers as laid down in the current issue of “At a glance guide to the current medical standards of fitness to drive” issued by the Drivers Medical Unit, DVLAS, Swansea. In addition he shall if so required, whether or not such medical certificate has been produced, submit to an examination by a registered medical practitioner selected by the Council as to his fitness to be such a driver.

Id rather not tell them if I dont have to and work until at least my next exam in 2 years but it probably best to be honest with them. Im perfectly healthy otherwise, my symptoms are tiredness and slight numbness down my left side.