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Not been on - just cannot cope

Will try not to bore you all this site has been my life line for over 3 years then decided I would not come on again as I felt I was a waste of time until I got lovely email from ms society asking if I was ok cried for about an hour. Only now I feel I can reply we sold our family home and had to move to another area to afford a bungalow (great) I have my bedroom and the bathroom dining room my sitting room all on ground floorm thought life would be good. How wrong husband of 42 years loving it he has sitting room skytv) I am in dining room watch tv then bed he no longer has the problem of getting me to bed etc which I am glad of.

When I read threads in here befor about people going to doctor saying migraine or all in your head I actually cried at some of the posts thinking how lucky I was cos had same doctor for 20 plus years knew me as outgoing, mad as a brush to this quiet no confidence sad individual in constant pain she was great, but moving house meant moving gp OMG after registering for 3 months was very unwell she said I do not have your notes come back next week I knew right away I was scared. I took my husband with me we told her about the symptoms and Neuro wanted another MRI but no appointment came in would like to be referred, She said YOU DO NOT HAVE MS I have read your notes you do have arthyritis in your spine which can cos symptoms blaa bla bla but I will refer you if you insist but think it is all in your mind. When we left I told my husband this appointment when it comes through will be a complete waste of time he said you do not know that. Appointment came saw neuro he had the cheek to say could a student sit in then without much examination or discussion said I think you need to see a phychiatric or phycologist I cannot remember but felt brave that day after 3 years and said I knew you would say that I knew what my referral letter would have said but as usaual I agreed but he then annoyed me by saying I can send you for a MRI I just fill in a form but I knew there will be not changes GOD I WISH I HAD HIS CRYSTAL BALL sorry for long post and got fed up moaning at you guys all the time but change of house, doctor thought for the best now completely on my own after 42 years married 3 kids doing there own thing no grandchildren do not know where to go from here .

Jan x

Is Rizzo ok not seen any posts on here from her she helped me so much

Hello Jan

You’ll have to excuse me because its getting late and I struggle to take in a lot of information at once.

Have you had a diagnosis of ms by your previous gp Jan? The neuro is arranging for you to have an MRI yes? not sure why he feels the need to give an opinion about the outcome of the scan before you’ve even had it. Just for future reference, if you don’t want a student doctor in the room then say NO.

You can change your gp if your not happy and ask for a second opinion with another neuro.

Are you saying your completely on your own now? not with your husband.

I’m really sorry that your feeling so unhappy.

((((((hugs))))))

xxx

Thanks Blossom for taking time to reply, he did ofer new MRI but siad I know there will be no changes (crystal ball) when Neuro before said imperative we get another MRI in 12 months that was nearly 2 years ago I really wish I had his crystal ball he is going solely by the new GP he dose not know me from Adam my last GP I had been withlast gp for nearly 30 years she know the other Jan, lively, outgoing annoying actually most fold would say jan sit on your ars… for 2 minutes. - just feel my old life gone - very sad,

Jan

xxxxxxxxxxxxxxxxxxxxx

Well the positive thing to do Jan is get another scan done and see what it shows and take it from there.

You’ve made some big changes to your life recently, it will take some adjusting.

Are there any local groups you can join that your interested in, even a bit of volunteering when you feel well enough.

There must be things you and your husband like to do together.

Take care

xxx

Hi jan.

I recall you and I were buddies on the site before it changed.

Yep, I do remember your name and we chatted via pm often.

Good to see you back again, but not good to read how you are feeling now.

How far away have you moved to? Is it out of the question to still use your old and friendly GP? I guess I already know the answer to that…sadly!

My hubby and I do nothing together. he is my main carer, but I have 3 others. I comes every morning to get me up, showered etc.

2 other carers take me out once a week and 1 of them sleeps over.

I pay for these via Direct payments. Do you think you could be eligible for DPs?

It has made a huge difference to my life, as hubby has no interest in any form of social life.

luv Pollyxx

I get direct payments its a godsend. I have 2 ladies been with me nearly 5 years now. I just had a reveiw and they have given me an extra 2.5 hours a week.

Sorry to hear you have been given the run around hun.

I went to see another neuro privately as my leg was a mess in the summer swollen ankle and could hardly walk. My GP felt it was time i saw one again. I decided to pay so i could see him quicker.

This neuro had decided WITHOUT SEEING ANY OF MY NOTES, that I could be suffering with functional neurological disorder not MS.

I told him fine I dont care can you cure FND? He told me it wasnt a pysc diagnosis but a real disease affecting the nervous symstem but without any positive tests so they call it FND. I could be sent to a rehab for 2 weeks rehabilitation etc. Now I know all about FND so I just played along. I have lots of POSITIVE results and been told I have MS by 2 other doctors although 1 thinks its benign.

So I let him chat on. I said to him, well i am happy if you think it will help i will try anything to get well again. He told me he couldnt confirm it until he got all my notes.

I received a copy of his letter to my GP where he felt I could have FND and not MS and he would review my case…

I then about 2 weeks later got another letter off him, and he said more or less "I have reviewed your notes and I cannot change anything to your original diagnosis. If you need to see me for a chat please dont hesitate to call my secretary blah blah…

LOL. What an idiot. He had never met me, and had not even seen my notes yet he decided because on my exam my leg was actually behaving itself, that i did not have MS. Although he even said to me there was no nerve signals getting to my ankle/feet…

So I had to have FND.

Some neuros are just … well better not say lol.

I personally would have been happy with FND diagnosis if thats what I had because then i could be cured, but after dealing with this illness now for 7 years I think i know what it is.

Go for the MRI and ask for a physc evaluation what have you to loose? Its good for the soul to unleash anyway.

Since i saw this guy i have been paying to see a counsellor myself, and she has made me feel more positive about myself, and has helped me to cope better with things as I get quite angry and frustrated not being able to do what i did 8 years ago. Its helped me a lot to be honest, and has given me someone to just talk to.

Also contact your local adult social services team and see if you can get direct payments. Its great having this support as you can have a budget to get a carer in to help you or even just chat to you.

Dont give up hun, get active. Tell them you want the MRI how the hell can they say there wont be anything on there. Its not only for lesions anyway but can pick up other things.