HOW TO GET MS DIAGNOSIS QUICKER

nkess1

Hi
I'm hoping someone can help point me in the right direction.
Had trouble with pain numbness and loss of function on right side plus other similar symptoms of ms orthopaedics sent for Mri of brain and cervical spine as they suspect ms.
At same.time I had blurred vision and pain in right eye. Went to optician who referred me to Optamologist. Following tests including field vision test he queried other symptoms like numbness pain etc. He diagnosed optic neuritis. And he.seriously suspects ms.
Went back to gp who started to tie all my.history of pain numbness difficulty walking together. I walk with limp and sometimes i drag my right leg when i walk. Plus theses come and go. Which he says is similar to relapsing remitting ms.
Had Mri of brain and cervical.spine done last month. But have been. On referral list.in tallaght and Beaumont since January. Been advised 3 year wait to.see neuro.
My query is can anyone recommend a neurologist who can review my Mri findings privately sooner then 3 years away. Plus what kind of money are we talking to have them viewed privately.
I'm out of work due to this as I can't stand or.walk.for.long periods so am.on medical card hence long wait in public list.
If I go.private for review of findings can i be referred back.to.public for treatment or do I have to stay private.
Trying to see what my options are.
Thanks in advance. And sorry for all the full stops my vision is bad today and I only see the dots when I read back the post.
I.just need to know if.it is.or isn't ms. I need help with the pain and loss.of function and gp can't do.any more.for me. He is giving me all he can. Without a definite result he is at a loss. He also reckons I cant wait 3 years to see neurologist.
Thanks
Kess

Wesser

Can your GP not retrieve the result of the MRI from the hospital that did it?

njs030

You can pay for a first appointment to see a specialist and then revert back to public afterwards. The price depends on the individual specialist themselves but there is still a waiting list.
Your gp will still have to refer you and should have an idea of prices.

embee

My local hospital did mri scans and a lumbar puncture in February of 2014, after I had gone to the GP and told her I thought I might have MS. They told me that my mri was all clear and that I didn't have MS, I just needed to lose some weight! I asked them for a disc with the mri images which they gave me, grudgingly. I went back to my GP and she got me a private referral to a neurologist in the Beacon. I went to see the neurologist armed with my mri disc. He looked through the various images and he turned his computer monitor around so I could see it and said: "can you see anything on these images that looks like it shouldn't be there?" I told him I didn't know how to read mri scans but as clear as day, I could see five or six white spots. I told him that I assumed that the white spots shouldn't be there, to which he replied "no, they shouldn't, those are MS lesions. I don't know why they told you that you don't have MS because you do." So that was my formal diagnosis, in April 2014. He rang my local hospital for the lumbar puncture results- which was positive for oligoclonal bands, another marker of MS. He referred me back into the public system and now I attend Beaumont for MS related appointments. The private neurologist cost 250 Euro but was worth it, as I knew I had MS even though I was being fobbed off left, right and centre. My MS has been very aggro from the beginning, if you get put on meds be mindful that they don't all work and it's a bit of trial and error to find what suits you. I'm on an infusion therapy called lemtrada, which I had last July for five consecutive days, and I'm going in for round two of lemtrada next week which is three days in a row.

Good luck with everything!

Arbie

embee wrote: »

My local hospital did mri scans and a lumbar puncture in February of 2014, after I had gone to the GP and told her I thought I might have MS. They told me that my mri was all clear and that I didn't have MS, I just needed to lose some weight! I asked them for a disc with the mri images which they gave me, grudgingly. I went back to my GP and she got me a private referral to a neurologist in the Beacon. I went to see the neurologist armed with my mri disc. He looked through the various images and he turned his computer monitor around so I could see it and said: "can you see anything on these images that looks like it shouldn't be there?" I told him I didn't know how to read mri scans but as clear as day, I could see five or six white spots. I told him that I assumed that the white spots shouldn't be there, to which he replied "no, they shouldn't, those are MS lesions. I don't know why they told you that you don't have MS because you do." So that was my formal diagnosis, in April 2014. He rang my local hospital for the lumbar puncture results- which was positive for oligoclonal bands, another marker of MS. He referred me back into the public system and now I attend Beaumont for MS related appointments. The private neurologist cost 250 Euro but was worth it, as I knew I had MS even though I was being fobbed off left, right and centre. My MS has been very aggro from the beginning, if you get put on meds be mindful that they don't all work and it's a bit of trial and error to find what suits you. I'm on an infusion therapy called lemtrada, which I had last July for five consecutive days, and I'm going in for round two of lemtrada next week which is three days in a row.

Good luck with everything!

embee, well done for taking matters into your own hands, but what a frustrating and disappointing experience it must have been with the 1st hospital. You have a very positive attitude, and fair play to you.

People should never be afraid to ask for a 2nd (or 3rd!) opinion. It's your body and your health, and you will have to live with the consequences of any delays or mistakes. Many of us want to avoid conflict or being seen as a "difficult patient". You shouldn't feel like you will be punished for asking questions and it's possible to ask for a 2nd opinion without offending anyone. Most healthcare staff will understand if you say that you are concerned/worried and if you ask clearly and firmly for a way to get a 2nd opinion they will (in my experience) usually try to arrange that. Unfortunately it almost always means paying for a private opinion, but that may not be as expensive as you would expect.

Many of the negative health experiences I hear about seem to have common themes:
- delays, which lead to uncertainty and stress
- poor communication, sometimes patients are not even told what their diagnosis is
- lack of portability, the healthcare record is "owned" and controlled by the hospital or GP practice instead of by the patients

I would really urge anyone who experiences any problems with their care to write to the CEO/manager of whatever service they are using and to copy in the Minister for Health and their local TD. This is the only way to get the attention of those who can make a difference on a systemwide level.

nkess1

Thanks for that information.
I just can't make head north tail of anything I have read previous to posting here. Then I saw it could be read privately but wasn't sure if I went that route would it all have to be private.
My gp says I can't wait the 3 years of a wait. In the last few weeks alone. I've almost broke my foot after walking into the biggest piece of furniture in the house. I know we all do it. But I walked into the chair because I didn't see it. I've fallen over numerous times and lose my baLance so easily. Especially at night. I've awful pains in my eye from the optic neuritis which are causing all sorts problems. I just need to know what it is and if it is ms then I can deal with it. Its the unknown is the hardest.
I just got a call this eve to say gp has report from hospital and I've to go to see him Fri so here's hoping things can start moving now.
I'll get him to refer me private for review and I'll mention the beacon.
Thanks again. Puts my mind at ease a bit more. X

tinofapples

nkess1 wrote: »

Thanks for that information.
I just can't make head north tail of anything I have read previous to posting here. Then I saw it could be read privately but wasn't sure if I went that route would it all have to be private.
My gp says I can't wait the 3 years of a wait. In the last few weeks alone. I've almost broke my foot after walking into the biggest piece of furniture in the house. I know we all do it. But I walked into the chair because I didn't see it. I've fallen over numerous times and lose my baLance so easily. Especially at night. I've awful pains in my eye from the optic neuritis which are causing all sorts problems. I just need to know what it is and if it is ms then I can deal with it. Its the unknown is the hardest.
I just got a call this eve to say gp has report from hospital and I've to go to see him Fri so here's hoping things can start moving now.
I'll get him to refer me private for review and I'll mention the beacon.
Thanks again. Puts my mind at ease a bit more. X

Hey nkess1 ,

How did things work out for you since ?