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Scared to Death

Hello All,

Brand new to all this and thought i needed to help myself by gaining a better understanding of my potential battle ahead and hopefully seek some much needed support/advice from you all who are/have been fighting your own battles.

Had lots of symptoms over the years (10 ish in total) in and out of the doctors, lots of tests, bloods etc etc but never been tested for potential MS.

Only recently when i googled why my eyesight in right eye is worryingly deteriorating (even after eye test saying all is good) also why my sudden stiff neck is not clearing even after physio did it flag up potential MS symptoms.

These mixed with all my other symptoms spells MS. Cant get appointment with Neurology for 6 months due to waiting lists which concerns me cause my vision is getting worse by the day, im so scared of going blind.

What shall i do, do i sit tight for 6 months and hope for the best or do i push my GP harder for emergency appointment with neurology?

I feel like my world is starting to fall in on me, so scared for my family more than me.

I look forward to hearing from you.

Ian

Ian,

If you are very concerned then speak to your GP, as a medical practitioner and your advocate they should be able to help or explain why they think you don’t need help.

If this is not satisfactory - Google a private neurologist and get a swifter appointment that way if you can.

It is easier said than done but try not to worry about unknowns and put your efforts into finding the actual position you are in. Only after that can you take it forward.

I wish you good luck at what must be a scary time.

Mick

Thanks Mick, I will need to head back to my GP as I am frightened to wait until my Neuro appointment in 6 months time. I can cope with my daily pain, dizziness and extreme exhaustion but the thought of losing my sight worries the hell out of me. Do you know if I am diagnosed and treatment started, will my eyesight improve or continue to deteriorate? Ian

Hi Ian

I think your final question has too many ifs and maybes about it.

No one here can say whether your eyesight will improve regardless of what happens with regard to neurological testing.

Mick is quite right in his advice to you. See your GP and find out if they can hurry up a neurology appointment.

Sue

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Thanks Sue, I will do just that and hopefully speed things along. My problem in the past has been to suffer in silence and not share how im feeling with others, including my loved ones but on this occasion I feel I need the support and advice of others who understand and have their own journeys to stories to share. Thanks again. Ian

Hi Ian, so only now, after you have partially self diagnosed yourself via Google, has your GP referred you for a non urgent Neuro Appt. No-one can blame you checking Google, because your GP has let you down. Google again using different words and it may suggest Flu or a host of others.

Insist on seeing your GP urgently. Keep calling the secretary every 2 days, until your appt is brought forward.

Worry brings the self torture of what if’s you do or what if you don’t. I understand your fear, most of us have gone through it. Best wishes, Chrissie

Hi Ian

I completely identify with the stress related to long waiting lists - I am currently on a 6 month waiting list for a nurse appointment. However I managed to get seen quickly by my neurologist at UCL. I found the number of my Neurologist’s secretary by calling the hospital’s main switchboard, and gave her a call explaining that I could not wait that amount of time to be seen. She was able to go into the Doctor’s schedule and see appointments were available in the next week. She called the booking team on my behalf and asked them to book me in sooner, so my original waiting time of 4 months was thankfully reduced to a week. She is a godsend. If you don’t know who you have been referred to I’d suggest asking your GP.

Best of luck x

Ian,

Sue is correct, only a medical professional should offer advice about diagnosis, treatment and prognosis. What I would say is do not be afraid to make a fuss. When I thought I was losing my sight , I made a nuisance of myself because I thought “if I don’t and further damage could have been avoided by getting support earlier, I will have to live with the consequences and so will my family” this gave me enough backbone to be a pain in the NHS backside until I got an appointment with a consultant.

Good luck

Mick

Mick, I really appreciate your advice and I know it’s the action I need to take. Thanks again. Ian

That is exactly why we always suggest talking to the neurologists secretary. Excellent example. I’m really pleased for you.

Sue

Hi Ian

First thing I want to say is, well done for opening up & reaching out. Everything you are feeling is normal. You don’t need to feel bad about it or apologise for it. Us humans don’t cope well with uncertainty, so it’s easy to catastrophize when you don’t know what’s happening. But you’re not a helpless victim, and there are things you can do.

As others have said, make a fuss. Another thing you could try is to see if your local hospital has an emergency eye service. That’s actually how I got diagnosed. The vision in my right eye started to get clouded, and I thought I just had an infection. So I went into the emergency eye department on my way to work, expecting them to give me some eye drops and send me on my way. I certainly wasn’t expecting them to admit me then & there! They only did that as it meant I’d get an MRI scan quicker than waiting as an out patient. 4 days later, I had the scan, got a diagnosis, and started some steroids to treat my eye (the vision improved a little, but didn’t clear completely. But I can still see with it, it’s just a bit cloudy, and I can still drive).

Also, remember that there are often many things that can help with different symptoms. When I developed certain symptoms, I just thought there wasn’t anything that could help. But I later discovered there was either medication or other aids that could help, things that would have made a huge difference had I spoken to someone sooner.

And in terms of the future, whether this is MS or something else, there may well be tough time ahead. BUT, it is not the end of your life. You still have a future, whatever happens. There’ll be hard times, but you can come through them. I bet you’re stronger than you realise. I may wish I didn’t have MS, and can kick & scream against it. But for all the dark times I’ve been through, I know there are good things that have come from it. I think I’m much more mature now, more empathetic, more resilient, and have a much better appreciation of what’s important. It’s led to me having some great experiences too, like being awarded a scholarship to learn to fly by the charity Flying Scholarships for Disabled People.

I better shut up now, as this has turned into a much longer post than I was expecting! But I’l just say, post on this forum as much as you need to, either to ask for advice (no question is too stupid) or just have a rant. We all understand.

Dan

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Thanks Dan and thank you all for taking the time to respond to me, it’s greatly appreciated. Until 2 weeks ago I had never even considered MS as a potential for my 10 years of symptoms, I just thought I’m getting old, stop my winging and get on with life!. I even started to avoid going to the doctors as I thought they looked at me as a hypocondrac and a pest. over my 10 years I have been backwards and forwards to docs, bloods and bloods taken etc etc…I’m really mad that they never take time to look back and read my notes, put 2 and 2 together and I’m sure they would have considered MS as a potential cause of my problems. I try to avoid the Google doctor in me but I needed to know what could be causing my cloudy vision and persistent stiff neck. …and the first thing that pops up is MS!..this was 2 weeks ago. This along with all my other symptoms leads to MS and you know what I’m a little relieved we may have found what’s really going on with my body and mind. I know there is no magic pill that will make me feel 21 again but any treatment, remedies or advice I see as light at the end of what’s been a very shitty tunnel. I will be making a fuss this week like so many of you have recommended to hopefully push through an earlier appointment. Thanks again and I will post again once I have news. Enjoy the rest of the weekend. Ian

Hi Dan and thanks again for responding to my post, it’s much appreciated and so helpful. Hope you don’t mind me asking but has your vision got any worse over the years since your diagnosis?

Hi Ian, I don’t mind at all :). It’s nearly 15 years since my vision was first affected, but no, it hasn’t got any worse since. My left eye hasn’t been affected at all, only my right eye. I’ve occasionally had double vision, but I saw an ophthalmologist who gave me some eye exercises to do. And that quickly sorted it out. Does your hospital have an emergency eye department?

Dan

Not sure Dan but will check it out. Did you have to inform DVLA about your vision problems?

Hi Ian, just saw your concern about dvla. No-one can say what the outcome can be until appropriate tests are done. The majority of MS patients still drive, for some patients, physical obstacles are overcome via adapted cars.

Funks terrific positive attitude is how we have to be after a PrImary Progressive Multiple Sclerosis diagnosis or any type (there’s a few types of MS).

Your concern and attempts at second guessing outcomes are natural. Come to the forum & let it out. Always someone to give their experience and advice x.

Analogy: akin to watching a brand new film, untitled, unhyped. You’ve never read about the story or know what it is about, you’ve heard of an actor but don’t know if that actor is in the film. You take a seat, some gripping music starts, everyone settles and waits. Then you think, I know this film is going to be awful, the worst I’ve seen, I think I know how this will end, actually I’m certain it’s a bad ending, yep, deffo the worst ending and everyone will be shocked, how will I cope if the crowds flee to escape from the film…I could leave now, hmmm better wait, what if the crowd pushes me over & I break my arm, hmmm my arm and my leg!

This is where you are Ian, most of us have been there. We call it Limboland, waiting for doctors, tests and results.

Back to the Anology: You stop your mind going into overdrive, you can breathe, your tension reduces. You’re aware no-one has seen the film, so you know it’s impossible to guess the ending. But something has sparked a fear in you. It can only be the music at the start, it’s tensed you up for the worst.

But what if the music was leading to an advert for Munster Monster Crisps. The actual film starts a bit later. All that tension and tummy churning for Crisps! Oh, here’s the film coming on, let’s wait & see.

Ah bad luck Ian, This imaginary film is, a RomCom :-)) xx

People only have to notify DVLA & car insurance company after a professional, medical, confirmed diagnosis, of MS (and you may or may not be). DVLA medical team liaise with Neuros to discuss risks or potential risk a driver may be with this condition. The last thing they want is to remove independence unless applicants are certainly a high risk (based on Medical Evidence only, not medical opinion).

You’re a long way from that Ian, you’ve only just arranged the cinema tickets. Take care, a whole new start soon, let’s make it a Happy New Year.

Chrissie x

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Chrissie, brilliant and Thank you. Have a great night all and I will keep you posted. Happy New year Ian

Hi Ian

Chrissie’s said pretty much everything I was going to say about the DVLA. If/when you get a confirmed diagnosis, let them know. They’ll send a medical questionnaire asking about your health, and also details of your doctor(s). Then about 6 months later (and that’s not an exaggeration!) you’ll probably just get a 3 year licence. I think that’s just standard procedure with MS, So you’ll just have to repeat the process every three years. Yawn. It’s possible they may want you to have an assessment, just to make sure everything’s OK. I did one, but voluntarily, not because they needed one. The people who did it were really helpful. As one of them said to me, they weren’t looking for reasons to stop me driving; they were looking to see if there was anything I needed to make it possible for me to drive.

Dan

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Hi Dan, just read your experience and praise your great idea to prepare by having a driving assessment to send to DVLA with the form.

Afraid my outcome was different but nothing would or could change the decision to revoke my licence. On receipt of the big shock letter, I rang DVLA. My brand new, open top, spotless shiny black Peugeot 307 car was parked outside.

DVLA wrote to explain medical evidence shows damage of inability to react quickly. I was fuming, I’d driven 50 miles that day & saw the letter when I got home. Then my daughter calmed me down, made a cuppa & told me to find alternatives because no matter how livid & stressed I get, I can’t change the law!

Of course everyone was right, my condition of PPMS has deteriorated & I would have refused to drive sooner or later. Not just for my safety but innocent people.

I have a small scooter & 2 Powerchairs. One rides up to 4 mph 22 miles distance, is easy to manoevre and to take on a bus. The other Powerchair collapses to go in the boot of most cars up to 12 miles. So I am still able to get out & about independently. My hubby doesn’t mind driving me anywhere, but I hate to ask him, he does so much for me as it is.

HAPPY NEW YEAR

Chrissie

Hi all, it’s been a while but just wanted to post a brief update. Finally had MRI and Lumbar puncture 1 week ago now sit and await results. Does anyone know what the average waiting time is for receiving results, are you called in quicker if anything sinister is found? Ian