Poss mistake in the begining ?

New diagnosis and before diagnosis
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Hi folks i am new here and must say what a great site it seems to be from what i have read so far , i have searched everywhere to ask this question and landed here so here goes

Approx 2002 i was a ships officer on our local RNLI Lifeboat when late 1 night on a callout i noticed something wasnt right , when i switched the interior lights of the boat from white to red the writting i was writting whilst communicating on the Radio dissappeared totally and i came over all funny , not seasick but just wierd, after that night i went to see the opticians who gave me glasses but it still happened time and time again anyhows not long after i felt that something was wrong and i could no longer hold the position safely so after 12yrs i retired and 1year later was asked to join the HM Coastguard Cliff Rescue team , after much hesitation and because they were begging i agreed and did a further 5yrs for them.

During all the above i noticed i started to pull muscles that i had never pulled or hurt before and figured due to the head injuries sustained from all the car crashes and motorbike accidents that my body was now saying hey times crept up your getting old now.

I was 35 when i first started noticing the difference and during my time with the RNLI at the later end i decided to get things looked into as i had noticed the tremors , i had always shaken but these had become somewhat troublesome now , after some examinations my Neurologist said at 1st it was ET (Essential Tremor) then a few years and visits later he changed this to what it is classed as right up til today Parkinsonism with Dystonic Tremors and he started saying i had a form of Dystonia.

Now here last January after a brief 4-5 weeks of pain in my left eye i went to my Drs who was not my normal Dr and she said i had Conjunctivitis of which i disagreed with her due to the fact my eyes were dry , but she sent me on my way with eye drops for this 4-5 days later i awoke totally blind in my left eye with huge amount of pain , i felt the pain through the pain medications i already take so i knew it must be bad , so off i went to the A&E to get checked anyhows after alot of toing and froing i finally got a diagnosis or Optic Neuritis from the Optham , so my Neuro orders an MRI Scan & Lumbar Puncture , the results of these came back as a white Lesion on the brain and O Bands in the CSF , he has now stated if it happens again its MS if it doesnt then its a 1 off episode of nerve inflamation.

Today i am typing this with an eye patch on so excuse any spelling mistakes as im still getting used to it all , but my question is has anyone else had this kind of history , as both myself and my wife feel that my neurologist may have made a mistake in the very begining as when i stated to him could this of been MS from the start hes saying no this is a secondary condition to the Parkinsonism and Dystonic Tremors.

Sorry its so long but i wanted to give the full picture to see if anyone else had the same start to it all , at present i can now see a very small amount of light in my left eye and blurs but its still painful and in the last 2 days ive had very sudden and sharp pains accross my forehead and in my eyes and then it stops and leaves me with a head ache , i have an Optham appointment on the 17th who said if i was going to gain any sight all improvements that i could expect would be settled by 3 months and im now in month 5.

All the best and thanks in advance regards

Sean

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Sorry forgot to say my symptons before the onset of ON and the MRI were painful spasms in my neck , back , chest , triceps and thighs and cramps in my feet , i was on and have been for sometime now Diazepam , Zapain , Baclofen , Amitripline , Domperidone , Ibrubrofen , Proprananol and now this last month Mertazipine as it has all got a bit much to handle and deal with , all this was before January 2013 so they have kept me on the same medications just lifted the doesage on some regards

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Hi Sean (Ha, just got it - Sean the Sheep!),

I’m sorry to hear all this. How fantastic, though, that you managed to keep going in such demanding jobs, for so long.

I’m no expert, by any means, but I think, to anyone who is, MS and Parkinson’s would not be easily mixed up, despite some outward similarities. It’s true neither condition has a definite test, but I don’t think they are commonly confused.

If you’d had MS literally years, as you’re suggesting might be the case, it would be very surprising to have only one lesion visible on MRI, after all this time. Yes, lesions can heal up and become less visible, and early in the disease course, may be too small to be seen in the first place. However, in general, the longer you’ve had it, the more damage would be apparent, so just the single lesion, after maybe 11 years-ish, is a little bit unlikely.

Of course, at this point, you still don’t have MS, because a single attack and single lesion don’t satisfy the “multiple” bit of multiple sclerosis. That’s why he’s saying it couldn’t be MS, unless it happened again, but would just be put down to an isolated episode.

Not everyone who’s had such an episode ever goes on to get MS. Often, the cause remains mysterious, but it could have been triggered by a virus or something.

There is some scientific evidence that MS and Parkinson’s may be genetically linked, and have related causes (I have both in my family, as, I think, do a couple of others here). So in theory, it might be that someone with one has a slightly higher risk of developing the other (unfortunately, having one serious, incurable condition does not protect us from getting another, and sometimes is even associated with a higher risk).

So although it’s very unlucky, I think your neuro is probably right that your original diagnosis still stands, but you’ve had something else as well.

I think you just have to keep fingers crossed that the something else never does turn into MS, and that eventually you can accept it as just one of those things, which may never be fully explained.

It is certainly possible for MS to be misdiagnosed in the early days, and we’ve had a few cases of it on these forums, but I can’t remember anyone first being told it was Parkinson’s. It’s pretty common for people to be told they’re depressed, or that they have chronic fatigue syndrome, or fibromyalgia. Parkinson’s not so common, I don’t think.

Don’t give up hope that the vision may still improve. MS episodes, or one-off inflammatory attacks that resemble MS, are notoriously variable, and it’s possible still to get some improvements after quite a long time. I don’t want to give you false hope, but I want you to know improvement is still possible. It’s not necessarily true that it won’t happen past three months.

Also, you may not notice improvements day-to-day, because they are so very slow at first - but only by looking back and comparing with when it first happened.

Hope this helps,

Tina

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Hi Sean, and welcome :slight_smile:

Tina’s give you some excellent advice, but thought I might add that my dad has PD and I have MS and, tlthough some of our symptoms are similar, the two conditions would be almost impossible to confuse to anyone who knows even a wee bit about neurology. One remote possibility is, however, that it is neither PD nor MS; that perhaps there is something else underlying all of your symptoms? I think this is something that might be considered at least?

Don’t give up hope on your eyesight improving. I have a friend whose optic neuritis improved up to 18 months after it started so you never know!

Karen x

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Hello Tina & Karen many many thanks for your replies and for your time i really appreciate it thankyou , out of all the Drs ive seen and even my Neurologist you both have been a great help and actually are the 1st to explain it in a way that i understand , i now think you are both very correct as me and my wife were discussing it again today and the points youve both made and we came to a conclusion that i only went severely down hill since last January , yes it hurt and was horrible before but now is worse than that and if this is how you both and all the others here feel everyday you have my utmost respect.

Yep Tina i was given this nickname on the Lifeboat and it stuck , if anyone ever comes to look me up in my home town and say do you know Sean ************ they get no joy but if you say sheep everyone knows he he he he , my friend was at a airport in Dubai where he works and was sat next to a guy and the guy happened to live where i live and my mate said do you know Sean ************** and the guy said no sorry , well my mate said you must do hes 2nd Meechanic on the Lifeboat for years and the guy jumped up and said ahhhh you mean sheep :slight_smile: so it kinda stuck im even called it in the street now hardly ever do i hear Sean , but i think id get some pretty wierd looks if i changed it by depoll hahahahaha.

Anyhows back on topic you have both made me connect the dots and Karen after being told 3 months and 5 months on still very little i was very worried as i can deal with anything but i must admit i am really worried about my eyes as i have been getting pains in my right for some weeks now , i hope you both and all have a good day and may we all one day get the news we all long for… yes we can stop this xx all the best

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Hi folks well im in the middle somewhere i think , i had an Opthma app today with my eye consultant and he stated that the pain i am getting in the right eye is because of the MS , so i stated that my Neuro had stated if it happens again its MS if it doesnt then its a one off and his reply was that because of the Mri & Lumbar Puncture results in his opinion its MS and i just gotta get used to it as from what he could see was MS related symptoms and the pain is normal with MS and to expect it to come in waves and as soon as the sight differs in the right eye to get straight to hospital and they will give me an injection.

So my Neuro says 1 thing and my eye Consultant says another so now im in the have i or havent i stage of questions he had a look into the right eye and stated apart from pain related everything seems okay with that eye , leaving me thinking what could he of seen as the visual field tests on the right eye came back as normal and in his opinion use common sense when it comes to driving to the hugely reduced function of the left eye but im fit to drive , 2 years ago now i started a small business which is growing well i hope of Photography and Videography filming and making Dvds of all forms of motorsport in our County , now im wondering how much time , effort or money should i invest into something i may be finding hard in the hopefully distant future , kinda hit me abit today and dont know where i am

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In my opinion, you have to go with the neuro opinion: only they can diagnose MS and ophthalmologists are not sufficiently trained or experienced to understand all the possibilities. It may of course turn out that the ophthalmologist is right, but for now, I think you have to live your life as if this isn’t going to happen again, but be aware that there is a decent chance that it might. In which case, if you have a growing business, then perhaps you should think about taking on an apprentice or partner at some point in the near future, when funds permit? It could give you back up should anything happen, but if nothing does, then you have the capability to do more with more hands, and continue to grow the business.

Kx

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Hi Karen

Many thanks yep sounds like good advice from you and was what i was thinking on the drive back home but feeling a little in nowhere land now , but yep onwards and upwards

Sx