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Diagnosed with ppms

Hi, after nearly 4 years of tests, scans and various prodding and poking, I have 3 weeks ago got a diagnosis of ppms. I’ve not been able to work since November, and in February I had my driving license revoked. Being a lorry driver, this has hit me like a sledge hammer, my gp has told me that I won’t ever be able to drive again as I now get constant double vision.

Surfer congratulations you get to join this exclusive club that non of us wants to be in.

I am sorry about your licence having grown up around HGV transport I know with a little what it is like both my brother and brother in law retired from HGV with health issues affecting their licences.

You are welcome here we are a happy bunch of souls and if you have any queries usually someone will be able to help.

Personally I have had PPMS for over twenty years and must say it’s the best fun I have ever had.

Excuse my appalling sense of humour but I joke about everything.

Don.

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Thanks for the warm welcome hoppity, you have to laugh at it I think, sounds as though we have a similar sense of humour. I’d much rather be in the mile high club or any other club too, but someone has to have something wrong, however small, its just unfortunate that we get lumbered with this.

I always say something similar, It was someone’s turn to have MS and I was the lucky one.

If you don’t laugh you end up crying.

Don.

Wecome on board Surfer,

This is a lovely forum to be on…and I have to agree …Don has a wonderful sense of humour I’ve gone from crying to laughing after seeing his messages. and his blogs are amazing!..but everyone on here is lovely its helped me tremendously I’m still waiting for a definite answer for my problems… but recently (November) got Frazer my assistance dog, he is my best friend and we go on lots of exciting adventures together.

Michelle x

Hiya Surfer. Welcome to the club, as Don said it’s not one everyone wants to join but there are worse ones. It is very hard when you’re first diagnosed, I’ve had 2 years of it now, but it does get easier. The people here have been a huge help to me, they have personal experience of it and their advice has been very useful. As each of us have different symptoms and cope in different ways there will usually be someone to help with whatever is stressing you out.

I was a nurse prior to dx and like you I lost my job which was very difficult. I felt like I’d lost a huge part of my identity and I couldn’t see that I had any kind of purpose but in time I’ve found new hobbies and interests that give me satisfaction.

Just remember that there are drugs and devices that can help you manage daily. Have you been allocated an MS Nurse and Occupational Therapist? They can be very helpful with symptom management and understand how challenging the simplest things can be. You mention your vision isn’t great, have you had prisms in glasses suggested? They force your eyes to work together. There’s no saying they’ll help you but they do for me, but what suits one may not help everyone.

Take care.

Cath

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Hi Michelle, thanks, your message made me smile, I have a dog too (tia), she’s the only one that’s been with me through it all, the highs and lows. She know it all as I always talk to her. I just miss the long walks we used to have, we used to walk about 7 miles a day. Now unfortunately I can’t manage 7 yards. But hey ho, I’d rather have this than someone less able to cope.

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Hi Cath, no I’ve not been allocated anything yet, as it was only by letter that the nuero told my go and funnily enough I went in the docs for a blood test and came out with ms, the doc thought the hospital had told me already, so he was just telling me things I’d need to do, so I asked him if it had been confirmed, he apologised and said he thought that I’d been told and gave me a copy of the letter. Doug

I do have one question if anyone can answer it though, I get constant double vision, my go has told me that its the ms that’s affected my left eye, which is why I’ll not drive again. Is the double vision common? Doug

Oh Doug what an awful way to find out!!! You must have had a huge shock! Did you suspect that you had ms or know that’s what you were being tested for? Your Neuro needs lessons in communication. Your gp can get your referral to the OT done, or you can even self refer by contacting adult social services. Mine is great, so many solutions to problems and equipment is given on the nhs. They can also help with getting grants if your house needs modifying for you.

I know it’s still really early days for you but if there’s anything you are struggling with there are always people on here who can help or point you in the right direction.

Cath

I get double vision because, according to my optician, my eyes themselves are perfect but the nerves sending the images to the brain are affected. My eyes are not focusing on the same thing and processing it right together (if that makes any sense) so by putting prisms in my glasses he’s making my eyes focus in the same place. He thought I had ms before I was diagnosed. They still blur and I get double vision when I’m tired but they do help.

Mine isn’t as bad as yours, I’m still able to drive,but it might be worth seeing a good optician. The glasses are expensive but if they’ll help you too I’d definitely recommend them. Hope this helps.

Cath

My gp won’t do anything til he hears from the nuero, luckily though I’ve got my appt with him next week, and after giving him a few choice words, I’ll be asking what the next steps are. I had suspected ms when the last MRI showed something and my go callede in for an urgent chat

Hi Surfer

Welcome to our “gang” in the club that no one would choose to be in, but hey ho.

Best of luck with your appointment with the neuro who needs to find a nicer way of informing anyone of their diagnosis.

Pam x

Hi, Surfer, I’m still don’t have a definite diagnosis…I don’t tick all the boxes, but I really feel that my double vision is connected to everything else…I’ve had double vision for many years since getting Labrinthiatus at 25, I’ve always lived with it but sometimes would go through a patch when it was particularly bad with vertigo and drunk hangover feelings, it was always put down to stress…now more recently 5 years ago… wobbly legs but could still walk and run, and now since 2 years ago following a minor opp. lost most of my mobility, very scary at the time…couldn’t weight bear at all…but some has come back as in that i am now able to walk around my own home, I have developed a good technique, i fall quite a lot but i’m good at landing! Outside I use a power wheelchair…I hated it at first …but Iv’e grown to love it…the wheels are my legs now and it gives me loads of freedom, please note…not everyone ends up needing to use a wheelchair…But going back to your question I do think the weakness in the eyes and in my other muscles is connected. I’m not an expert there are people on here that will know loads more than me.

It was lovely to hear about your dog…they truly are a mans best friend.

Michelle x

[quote=“Min”]

I get double vision because, according to my optician, my eyes themselves are perfect but the nerves sending the images to the brain are affected. My eyes are not focusing on the same thing and processing it right together (if that makes any sense) so by putting prisms in my glasses he’s making my eyes focus in the same place. He thought I had ms before I was diagnosed. They still blur and I get double vision when I’m tired but they do help.

Mine isn’t as bad as yours, I’m still able to drive,but it might be worth seeing a good optician. The glasses are expensive but if they’ll help you too I’d definitely recommend them. Hope this helps.

Cath

[/quote] It was my optician that wrote to my doc about the double vision, it was him that flagged it up as he said my vision was 20/20 and I didn’t need glasses anymore. That’s when the ball started rolling quicker. Doug

I agree Pam, its a ‘gang’ that no one wants to be in, but only the select few, and only the best people, you are all great and very supportive. So thank you all for allowing me to join. If only it was for a different reason. Doug

Hi Doug glad you found us. I have had double vision twice both times lasting approx six weeks, I have used an eye patch which gives me single vision but to be honest once my vision has become totally double (not overlapping) it’s easier not to.

If your vision problem is long term as min says ask to try prisms. I’m sorry about your licence when did you lose it? Have they indicated if it is permanent or temporary in case eye problem is resolved?

Jan x

My doc has told me that I’ll never get my licence back, I lost it officially on valentines day. The double vision seems to be getting more constant, I’m OK if I keep one eye shut though.

Hi Surfer, welcome to the gang! You couldn’t have found a better place to be dealing with this bloody disease. It’s no fun but believe it or not after a while you do learn to cope better.

Best advice… take it one day at a time. Just deal with your symptoms today and let tomorrow look after itself.

Btw, if you have critical illness insurance, you can claim it now. (I, on the other hand, cancelled mine one year before I got ill).

Also, see an optician about getting prisms in your glasses. Can really help with double-vision.

See you on here again,

Pat xx

l have 3 dogs - all rescue - 2 Rotties and a Romanian sheepdog. l take them out for miles everyday - over the fields and woods on my Tramper scooter - it is almost all-terrain - not many places or muddy ditches l can’t get through.

TGA - do a super sport - lts a 3 wheeled beast that is the Harley of disabled scooters. Just the thing for you and your dog.

Also, look at the facebook group called Biotin for Progressive MS. New trial recently found that a high dose of Biotin B7 has offered help for people with PPMS. One of the best results they got was for people suffering eye problems.