@Sylvanna

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Sylvanna

How long did your diagnosis take?

Here's the thing, although I am actually really pleased to finally have a diagnosis of 'mild' RRMS I am really angry about how long it has taken. It is 8 years since I first went to the GP after suffering what I now know to be my first really obvious relapse. The delay in diagnosis was not for want of trying - or of relapses for that matter. Not that this is a competition, but how long did it take for other people to get the correct diagnosis? I am curious because I feel like I have waited a ludicrously long time. I even remember telling my GP about 5 years ago that I would have to give up my career because the pain and sleep disturbance was unbearable - fat lot of good it did me. Now I have no career and bear all the signs of mental trauma from the repeated denial of my reality by those from whom I sought help. I am not a negative person but this really screwed with my mind, not to mention my body! I'd love to hear from others who know what I am on about. I know my story must be fairly typical. Thanks in advance.

Stumbler

@Stumbler

@sylvanna , there are many tales of implied Hypochondria on this forum. For me personally, I had my first episode in 1985 and was diagnosed in 1997. I can't say I had much going on in the interim though. Your personal experience is all history now, it can't be changed. While I agree it has been a frustrating experience, I would draw a line under it and concentrate on living in the present. Onwards and upwards. :wink:

Vixen

@Vixen

Hello @sylvanna, sorry you are feeling so bad. I was very fortunate in getting a quick diagnosis which was about 4 months from 'sudden onset' to diagnosis earlier this year. BUT it is a fact that I may have overlooked previous symptoms or that they were so minor I didn't feel them. The problem is, that's the nature of our mysterious MS. By contrast, my sister has unfortunately got a diagnosis this year too. Only when this came about this year, did she, GP and neuro start stringing together previous flares to become part of the diagnosis. I see completely why you find this frustrating. That said, there is lots of overlap between various conditions and doctors are very reluctant to make a call on one, probably for good reason. Doesn't help us patients though, and it's really upsetting when we know ourselves that there is something really, really wrong. As @stumbler says though, you need to focus on where you are right now as we know that stress and anxiety does have a marked impact on MS. The good news is that I see from your profile you are on Tec - like me - and that we are all in a good space at the moment in that research and discovery is really ramping up which will hopefully be benefitting us all in some way, shape or form in future years......x

Salvador

@Salvador

I realise now that my first signs of MS started when I was about 14, and my definitive diagnosis came a few weeks before my 50th birthday, though we had strong suspicions for a year before that. So, about 36 years of suspecting I had some sort of underlying illness, which I don't think is an unusual experience with MS. My advice to you @sylvanna is that the anger you feel is entirely understandable, but it won't help you to come to terms with your situation. MS drains your resources so you need to concentrate the energy you have on running your life without unnecessary drama. It's actually quite liberating when you realise that all forms of bitterness are futile 😅. I spent 36 years feeling like shxt for no identifiable reason, so I won't be wasting any more energy fretting about what might have been. I'm spending time at the moment planning my solo unsupported attack on the Big 3 next year - North Pole, South Pole and Everest. This last paragraph might be a lie though. Chin up!😁

Vixen

@Vixen

Haha @salvador, maybe you should set your sights a little closer to home - Snowdonia - and you can drive there! X

londonlad

@londonlad

@sylvanna for me, i was basically diagnosed in a matter of weeks. march this year, i woke up one day and when putting my foot down, i was slightly off balance. a week later, ear infection ruled out, i was in hospital. a clear CAT scan, but a very lit up MRI scan, led a junior doctor telling me, they saw demylanation in the image.. a few more doctors later, a Spinal tap and 3 days of steroids and i was told it was CIS at this point. later it was changed to MS. given there were 9 lesions, and a black hole lesion.. with hindsight (yeah that annoying fk), i probably had several symptoms over the years, i just ignored. i think i have had occasions of having vertigo, put down to ear issues,.. cognitive issues (especially memory) and perhaps some sensory stuff. likewise one of my ex GFs noticed my eye jumping around oddly a few back, which i thought was tiredness, which my doctor, suspects was a nystagmus. but none of these "ifs" matter now.. i was pretty scared at what happened. it was all quite traumatic, and a big shock.. but on the other hand, i feel lucky, a quick diagnosis and was quickly on an effective treatment best of all, its prompted me to make several lifestyle changes, a lot of which i had wanted to make before.. and MS has been the catalyst to help me achieve them take care,

merfield

@merfield

Hi @sylvanna, my unsteady gait was dismissed by my GP as being my 'neck, its age related'.a year on, another GP sent me to a neurologist. He referred me to an orthopaedic surgeon. I had surgery. A year later and worse, I went back. The neuro did all the usual tests and finally I had ppMS. 4 years after visiting my first GP. @stumbler is right, as are others...draw a line under it and live in the present. It is as it is. Ms is notoriously difficult to diagnose...don't dwell on it. Enjoy the life you have.....xx

LucyH

@LucyH

Dear @sylvanna I am so sorry that this has happened to you. It took about seven years for my diagnosis. I was treated in an appalling manner. Yes, you will have to let it go, but what has happened to you might need to be acknowledged first (whether formally or not i.e. it could even be your friends and family telling you that they realise that you have been treated unfairly). I spent a long time taking my own case to the PHSO, the GMO, CQC, ICO etc. In many ways, a complete waste of time; indeed, I had to correct the PHSO's report for them, which initially did not uphold my complaint. Eventually, I received an unreserved apology from the hospital (I told it to keep its £200). The bottom line is that I did not benefit from taking the case I took; however, you can be sure that the people following after me will be treated a little more carefully (one specialist does not work with the public anymore, another de-registered after I made the complaint). Perhaps you need to spend even one day writing out how things went so wrong...then decide if you want to send it to the hospital. Why not make someone else's journey a little simpler if that gives you any satisfaction? Then, as the others here say, get on with looking after yourself. Either way, take good care, best Lucy xx

Sylvanna

@Sylvanna

Hi all, thanks for all your comments. Sorry I don't have the energy to reply individually to each of you right now - I've been really ill with viral bronchitis for 2 weeks after taking a course of steroids to treat a relapse. The lack of sleep from this has made my mood even lower. It is really helpful to hear your stories as it gives me greater perspective. You are right about living in the moment and appreciating what you have today. The past is another country and all that. @Lucyh - what a difficult experience; you have my deepest sympathy. In my darkest moments I have considered going after the GP who was so awful to me, as I still occasionally bump into him at the doctor's surgery and feel really panicky when I do, but decided this would be fruitless. Besides the NHS is financially burdened enough already. Funny you should mention writing it all down - I started a document called 'rant' a few weeks ago. I am nearly at 5000 words and I haven't even written up the last 3 years yet! Writing comes easy to me - my last book was 30,000 words! Ha ha. I hope that I can write something about MS that is actually worth publishing without it reading like a misery memoir. The hardest thing for me is that sadly history is repeating - I had to wait 8 years to have what used to be completely crippling endometriosis diagnosed correctly. I've had so many medical people say all my problems were because of stress, implying they were psychological, that I used to think I was going mad. This is where my deepest scars lie. I think they denied my problems because they assumed hypochondria - my lovely brother died of a rare brain tumour when I was 7 and he was 11. My family has all the luck! I rebuilt my life in my mid-twenties after getting the correct treatment for endometriosis but only had a few years before MS pain kicked in. It is so frustrating!!! I'd like to start again and I am trying hard to maintain my interests and skills through voluntary projects but fatigue, the fear of pain, cognitive issues and loss of confidence are preventing me from seeking employment. I feel done in and I'm not even 40 yet. I've finally started sleeping a bit better after 6 weeks of worsening insomnia and sleep is the magic ingredient for me. When I get enough it is so much easier to face life's challenges with good humour. I am also on the waiting list to talk to neurological psychological services. I hope this will be helpful - especially if they are able to acknowledge the effects of delayed diagnosis. Thanks again for all your input. I can see joining this forum has been a positive decision already. Take care x

Sylvanna

@Sylvanna

By the way @Salvador - I really like your style. I'm planning a trip to the moon in a week or two. Fancy coming along for the ride? 😂

cameron

@cameron

@sylvanna - time to make your 'bucket list?' I have found this a really helpful focus for living..... dreaming a bit, then searching out ways of making things happen. I love travel and now I can't backpack etc have been 'forced' (!) to try cruising. It's wonderful, and I would never have done it pre-MS. I'm ticking off the places I want to go to.... Next year's challenge is going to be fell walking, or rather the specially-adapted walks available through the Lake District National Park's programme 'Miles without Stiles'. I've booked ten days in the Lakes and with the help of my travelling companion and my walking poles am DETERMINED to do full days in the fells, rain or shine. I am so looking forward to that well-remembered feeling of exhilaration being in the outdoors, high up, rain on your face.....Can't wait. What do you want to do and are you absolutely sure it's impossible?? xx

Sylvanna

@Sylvanna

@Cameron good on you. In my professional life I used to photograph mountains and know much about their alllure and magic. The last one I climbed was Helvellyn about 4 years ago as it had always eluded me. I was done in after but I have wonderful memories. Enjoy your trip, the Lakeland fells are incredibly special.

Sylvanna

@Sylvanna

@nutshell88 your visual symptoms are interesting. I started have weird bright shapes appear in from of my closed eyes aged about 10. At the time I described them as a floating pineapple ring of front of each eye. I eventually went on to be diagnosed with migraines but by this point had no visual aura. I have had a weird halluncinatory thing over the last 15 years or more - lots of feint red and cyan blue dots appearing across my entire visual field. Mostly when I am tired or when it is very bright. Occasionally when I look at straight lines where there is strong contrast, like the edge of a window frame or the verticals of a radiator, they sort of zig-zag. For real. All highly mysterious but my neuro considered childhood migraines clinically significant. Stranger still I don't get migraines any more, touch wood. All part of life's rich tapestry. 😀

potter

@potter

At least 10 years maybe more I have had some kind of MS symptom as long as I can remember. My doctor even knew that I had a family history of MS and ALS. He thought I was I hypochondriac, never said the words out loud. He would say "things that that happen, nobody knows why for sure." I was having problems with MS hug at the time. He told me I probably was drinking to much caffeine. Even when he sent me to a neuro he thought I had pinched a nerve in my elbow. My arm wasn't working right and felt burning hot or ice cold. When he gave me the referral I said maybe they will check me for MS. He said even if you have it they can't do anything for you. When I saw the neuro he said I am checking you for MS, ALS and I'll go ahead and check you for nerve damage. I changed GP's after that. As you can read you are not alone, you need to get over this anger it's not good for MS. Do you want this bad doctor make you worse by being angry at him. Potter

Salvador

@Salvador

@sylvanna I'd love to go back to the moon, beautiful place though lacking some atmosphere. If you're driving I'm definitely in though, that docking station is a nightmare on a Tuesday. Shall I bring the llama?😂

Sylvanna

@Sylvanna

@salvador I'll book our flights then but I don't think you'll get the llama through customs, so best leave it at home. :D