Advice badly needed

Hi, I am new to the site I have being lurking for a while and am really impressed by how friendly and helpful you all are. I have been unwell for 10 years and have being attending a rheumatologist for fibro. I have always felt there was something else going on as well but was always brushed off when I brought this up. I finally insisted on a nuero referral and met with him in January, he is ver friendly and Approachable and agreed that there is something neurological. I had an MRI without contrast and some white spots showed up but not ms related. I have trigeminal nueralgia, a positive babinski reflex , what sounds like the ms hug from the descriptions I have read here, bladder issues, really bad fatigue, cognitively some days a disaster, pins and needles, electric shock pains, a numb hand and arm constantly, tightness in my hips and knees that feels like they are banded really tight. Spasms in my upper back that can bring me too my knees with the pain, hot spots on my arms and legs that feel like warm liquid being poured on. My nuero thinks I have a upper motor leison, but so far no clear evidence of ms, I m due back to see him in a couple of weeks to get more test results and see we’re we go from here. This is we’re I need advice, I have being tested for RA, lupus,Sorensen, lymes all negative. I am going downhill fast this past year and if I get any worse I will not be able to cope. I have 5 young children and I am afraid I will not be able to look after them if this professes much more. While I do not want to have ms I do want a definite diagnosis in order to start treatment. I do not want to be left waiting for a visible leisons while getting worse. Will they start treatment without stronger evidence( I should have said nuero thinks it could very well be ms) or will I just be left waiting. If anyone has any suggestions of what else it could be, or we’re to go next I would be very grateful. Thanks, ANn

Some Neuro’s take the ‘wait and see’ approach. My feeling on this is that it’s their way of being totally sure before they give you any treatment. So maybe that’s what’s going on with you? I would now see your GP and ask about support etc, he/she might be able to refer you to some help. I would also phone the MS helpline, they are really good too, and they can put you in touch with helpful things in your area, they are also very good at listening. Hopefully someone else on here will reply to you soon, this message will move you up the forum a bit. Good luck xxx

I would add to Beverly’s response that neuros actually have pretty strict evidential criteria about when - and if - they can diagnose MS, so no, they can’t just ignore that there isn’t enough evidence, and treat you as if there was. The whole point of the criteria is to prevent misdiagnosis, and possible incorrect treatment, as MS is very hard to diagnose, and they need to be absolutely sure it isn’t something else.



The only thing I wish to add is, at the moment you need some practical support urgently with everyday issues. Like Beverly mentions, go and see your gp and get referred to physio/ occupational therapist etc.

I don’t know your financial circumstances but it may be worth contacting your local citizens advice, see if there are any carers benefits your entitled to. If not benefits, they can put you in touch with other support groups for your needs.

Good luck x

Thanks for all your comments more or less what I thought. How bizarre is it that if it turns out I have ms I had to wait for my condition to deteriorate in order to get the drug to prevent it deteriorating, you couldn’t make it up. Thanks,