just diagnosed

I was diagnosed in 2010 but some one forgot to tell me I slipped through the net??? I have just had a month from hell and finally I have been told I have MS and indeed I should have been told in 2010. All my symptoms which I thought were a sign of hypochondria have now got a name. So what should I expect now. I am waiting to meet with a Dr. who will put me on medication so will this stop me falling about like a drunk? will I stop being so clumsy? will I stop falling asleep at every opportunity? will I be able to concentrate on what people are saying to me? I have loads going on in my head I am 52, work alone supporting the elderly not sure if this will work for me. A friendly bit of advice from some one who knows what I am feeling will be nice. Cheers Maz

hi marion

that’s awful for you being told that you have slipped through the net.

when and if you choose to take a disease modifying drug be aware that it isn’t a cure.

your symptoms may ease because you have one less thing to worry about.

falling about l like a drunk is something i can relate to, (unless i AM drunk - ha!)

you can ask advice for your symptoms - maybe physio will help with the clumsiness.

there are only 2 drugs for fatigue unfortunately.

amantadine which you will be able to try and modafinil which the NHS are reluctant to prescribe.

anyway you need to learn how to relax, maybe try mindfulness meditation which works a treat.

any more questions be sure to ask on here.

take care

carole x

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Hi Maz wow what a thing to find out after 6 years I suppose it’s good to be told that it’s not your imagination and their is a name for all the symptoms you have .

Things may settle down now you know your not going mad and lots of help can now be offered and ways of coping physio , counselling ,DMD can help with fatigue just trail and error . Lots of people on here have many great ideas and advice so ask anything.

Good luck with getting any help you need from the medical profession and look after your self and rest all you can .

Take care Katy

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Hello Marion

Sorry to hear you’ve had a long delay in being told. I too had a 5 year delay in diagnosis, but that was back in the bad old days before even the beta-interferons were widely available. A reluctant welcome to the MS club anyway.

I would expect that the first drug your neurologist will want to sort out is a disease modifying drug. These are designed to stop further relapses and reduce severity of relapses. They will not sort out your balance problems, fatigue, concentration or clumsiness. Sorry.

To help with symptoms, there are a number of things you can do / try. First of all, ask for a referral to a physiotherapist. They should be able to give you some exercises to help strengthen you ‘core’ muscles, ie your abdomen, back, bottom, etc, plus your legs. You could also get a referral to an occupational therapist, they should be able to help you with fatigue management.

Other than that, there are drugs that can help with symptoms. But I assume they’d want to start a DMD first.

Sue

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I am feeling better already . Thanks for your replies it is good to know I am not alone. I am sure I will use this site often.

Thanks again Maz

I’d be so angry at not being told, I’d be filing a formal complaint and approaching a lawyer. Sorry you had the month from hell, never good to hear and find out. but yes at least its not all in your head, small good thing in the scheme of things.

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Hi Maz. I’m puzzled how you “slipped through the net”. Did you not follow up your tests and mri results, or whatever was done, and ask what the outcome was? I really am not being critical of you here, honestly, but you have to take responsibility for your own health! The fact that you have had ms diagnosed in 2010, (and you never knew) and 6 years have passed without you having any treatment or support is scary and beyond me. What if any relapses have occurred, (that may have been prevented) and caused further deterioration? I hope you’re on their tail now! Best of luck. :slight_smile:

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Hi Maz,

Welcome to the club. Firstly, have you been told what type of MS you have. lf your symptoms have been with you since you were first diagnosed - then l suspect you are Primary Progressive. With RRMS - your symptoms come and go.

Alas,for us with PPMS - there is no disease modifying treatment. But there is a lot you can do to alleviate your suffering. l keep away from the prescription drugs and try to stick to a natural vitamin and mineral regime. lf you look up online you will see that people with MS - are nearly always deficient in most B Vits and D3.

l take a high dose of all B vits and D3 - and do not have fatigue problems now - and certainly no brain fog. ln fact l hardly sleep at all - certainly not during the day - and possibly on 3-4 hrs at night. l do try not to sit down all day - only to eat my evening meal - and then watch a bit of tele before l go to bed.

lt is 33yrs since l was diagnosed - and l have only had the one mri/LP - and seen a neuro only 4 times since. So really left to get on with it. Never seen a MS nurse either.

Do google vitamin d3 deficiency MS and also Could it be B12 - an epidemic of misdiagnosis. Thiamine and MS – Niacinamide and MS. The more you can find out for yourself the better as it has been my experience that not many GP’s and Neuros understand MS. l certainly would question anything they tell you.

l get my vitamin d3 levels checked regularly - CityAssays B/ham do a very easy postal pinprick blood test. lt costs £28 - contact no 0121 507 4278.

A neuro-physio can help you with exercises to help your balance and core strength. Also, a one-to-one Pilates instruction will make such a difference.

lf you drive - then you will be required to inform the DVLA - and your car insurance company. l have to drive an automatic - which l prefer anyway. And l have never had a problem with the insurers.

A diagnosis of MS - is certainly not the end of the world. lt’s just a different life. Like many of us - l have lost many close friends with cancer - helped them go through the trauma of chemotherapy - only to see them suffer so badly to the end. lt puts everything into perspective - and drives me on to just try to work at keeping myself as healthy as possible. Also, l have an elderly mum 92 - who needs me to look out for her.

You should be entitled to benefits to help you - l get DLA - disabled living allowance - which is now called PIP. Also before l received my state pension l got Severe Disablement Allowance. There is a good website called benefitsandwork - they will help you get what you are entitled to. With DLA - l get the high rate mobility - also free car tax.

Well no chance of getting out in the sun to-day as it is raining hard - so will take extra vitamin d3 to compensate.

You may have to fight for the right treatment etc.

Don’t make any hasty life-changing decisions.

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Hi, I can identify with your being messed about, as I was wrongly diagnosed and in limbo for a total of around 12 years. I was finally diagnosed with a condition similar to PPMS.

You’ve had some good replies re the various types of MS, so depending on your’s, you may be able to feel better.

Pollx

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Hi Maz

Welcome.

Sorry to hear that you have been mucked about.

Just wanted to echo what has been said above.

Hopefully you will feel happier when you have discussed treatments with your neuro. Hope they give you an apology.

Shazzie x

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Hi. You have had some good advice above. You need to know what type of Ms you have. Basically there are four groups. I belong to the PPMS group. I was wrongly diagnosed at the beginning with a different type RRMS. I believe you should know all about yr disease. How can you learn to deal with ut when you don’t know what it is? It is the not the end of the world. Just a different one. You can learn to accept it. Take good care of yourself. Rest when you can. So many lovely people on here always ready with an ear. , or advice. Regards Anne

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Hi Maz

Sorry to hear of all the faffing around and slippages through the net… but now you know, it’s time to sort out learning to live with it! I’m Relapsing-Remitting and don’t have too many problems at the moment (certainly none approaching those faced by some of the people on here) - I do have occasional wobbliness on my feet, and fatigue in a big and serious way meant I had to cut down my working time to part time, and drop a grade as I couldn’t manage to do what I once had a handle on and could do as second nature. Not exactly good for your self-esteem, but necessary! Chase the consultant for all you’re worth, and make sure you get started on a DMD (Disease Modifying Drug) as soon as you can. I nagged my consultant into submission until he started me on Rebif, a beta-interferon, which I’ve been on since 2014, and haven’t suffered any more relapses… but there’s no getting around the fact that my memory is all to pot (post-it notes are an essential for me!), and I don’t cope with changes of routine very well - feel like a right muffin at times…! I’ve found this site invaluable for being able to log on and have a whinge occasionally without burdening the people you have to live with. You’ll need to inform DVLA (another shock to the self esteem when I had to return my driving licence, but a new three-year one arrived without problems, with all my entitlements OK) so that’s bearable. Welcome to the club which no=one really wants to belong to, and good luck!

Fracastorius (Jane)

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thanks lots to take in .Much appreciate the help xx

I am yet to meet my neuro so have not been given any medicatio​so still a bit rough. Do I need to tell the DVLA? so much to do, my list seems never-ending???

Maz

Yes, ultimately you will have to tell DVLA. They will send you a questionnaire and your answers will be checked with your GP. Then they’ll issue you with a licence that lasts 3 years.

If you’ve not met your neurologist, how did you come to be given a diagnosis? I assume you’ve had the tests (MRI, lumbar puncture and visual evoked potential)?

To be honest, I don’t think you should be making any changes to lifestyle, looking for answers, or even telling DVLA etc until you’ve met your neuro and ascertained which variety of MS s/he thinks you have. A recommendation for DMDs and / or symptom relief would be discussed then.

Sue

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had a MRI scan visited neurology dept Dr Vanderpol she told me I had ms and indeed had this in 2010. I am waiting now for another neurologist appointment to discuss medication. It all seems so confusing

Presumably Dr Vanderpol is a neurologist who specialises in another field and she’s referred you to an MS specialist who can give you the low down on the various DMDs available to you. You could perhaps ask the MS specialist to refer you to an MS nurse (if that’s not already been suggested). Often the best information you get comes from the MS nurses. And they often have more time to spend with you, or maybe it’s just that you feel like they have more time available.

If you don’t get an appointment offered soon, I should phone the hospital, speak to Dr Vanderpols’ secretary, find out who you’ve been referred to and then phone their secretary.

Given that you’ve been left to get on with life for the last few years without having the support of a neurologist, or of course, any useful drugs, they should get on with sorting you out with an appointment.

If any of this fails, get on to your hospitals PALS unit. They are Patient Advice and Liaison Services. Essentially they exist to help you fight through the administration and, where necessary, complain about the service.

Good luck

Sue

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