Fibromyalgia Action UK
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oh well went back to hospital yesterday for results of my mri ,was so scared thought i was going to be told i have dementia,being told for so long now have fibo doctors not taking you serious when fibo is mentioned well its not dementia i have M S a diagnose at last but at the age of 64 told the doc is that possible thought it was a younger onset answer no could have had it for years, so just goes to show have not been taken serious for yrs

8 Replies

Hi Cazz

I'm sorry to hear that you have a diagnosis of MS you must be in shock, but at the same time it must be a relief that someone has taken you seriously. I hope that you get the support you need now. A similar thing happened to an old friend of mine, she was diagnosed with fibro but turned out to be MS. We all knew it was MS though, because of her symptoms, even people with MS told her it was MS.

Best wishes

Storm x


Hello Cazz49,

I know people who have been through similar situations and I know this doesn't bring much comfort but I think joining MS communities may help.You are obviously welcome here, however you may find that you can find out more up to date info on MS from charities and their forums.

Also you may or may not already have read one of our volunteers has a wife with MS so he may help you and inform you of the best websites & charities. I have added one link to MS Society above

I can only imagine the emotional pain and frustration you've felt over the last few years as you have known you are experiencing this symptoms and nobody seemed to be listening. Do you feel you'd like to complain about the distress this has caused? If so here's a link to the complaint procedure if in UK;

If you feel poorly and may be stressed by this prospect maybe you'd like to find out if there's an Advocacy service near you;

Wishing you all the best

Emma :)

FibroAction Administrator

1 like

hi thank you for your concern will at last be able to put a lable on things x carole


thank you x carole


Hello cazz49

I have read your post with so much pain and sorrow for your recent MS diagnosis, as I truly understand what and how you must be feeling at this time. My wife has Primary Progressive MS and I remember like it was yesterday how she felt and the tears and sadness that we both went through. She is sending you her love and warmth and empathises with your diagnosis, and wishes you all the best.

I do not know what you have been told so far, but there are 3 classifications of MS, and they are Remitting MS, Secondary Progressive MS and Primary Progressive MS. The Progressive MS are usually treated with the same types of medications but the Remitting is usually treated with high doses of injected steroids when you have 'episodes' of your symptoms. So it is important to get them to inform you of what type of MS they think you have?

MS is treated as a disability so you will be able to apply for PIP if you have not already? I have pasted the link below:

When you reach 65, you will be able to apply for Attendance Allowance, I have also pasted the link for this below:

In my wife's case, she has Primary Progressive, she has a Specialist MS Nurse who she can contact at any time if she needs advice or assistance with her condition. So this is something that you could ask about? Many NHS Hospitals run MS awareness courses, so it may be worth inquiring if your local hospital does so?

I have added some useful contacts for you:

MS National Centre, 372 Edgware Road, London, NW2 6ND. TEL: 020 8438 0700


National MS Helpline: Freephone 0808 800 8000

I have pasted the NHS Choices link, as if you look onto the right hand section of screen and follow the menu you will be able to find groups, services and friends near you:

My wife has said that if you ever need a friend, or need to talk, or need some advice, then PM me and she will get back to you. We both want to wish you all the best and let you know that you are not alone.

All my hopes and dreams for you

Ken & Julie x x


hi thank you for your kindness and info,at the moment think im in denial,i was so sure i was going to be diagnosed with dementia everything else went over my head i would have punched the air if my arms would have let me lol im not at the moment thinking about anything but im sure it will hit me in its own time not to hard i hope,have another appointment on the 15th may so will make all enquiries etc then once again thank you give my love and regards to your wife and hope she doesnt suffer to much x carole


Thank you carole, I hope that it goes really well for you on 15th May. I can understand your apprehension at the thought of dementia, as to me, dementia is the worst illness that any person can have! I personally wouldn't want to live with serious Alzheimer's.

All my hopes and dreams for you

Ken x


Hi I'm Binkynoo , I have graves currently on carbimazole medication which I don't like ! although in normal range , been accused of having panick attacks & anxiety of course with all my symptoms , but come to the realisation today & crying I may have MS ! My symtoms are imsnia although known to fall of for an hour & suddenly wake up ! Back pain burning sensation in hands & feet , depressed due to symptoms & the rest even now feel really funny. How do I get taken seriously @ tested anyone know do scared Iv got to go seey endo want off medication would like to try get a natural way of life eating good foods supplements see of will help.


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