I have been ill for nearly two years now. Not any closer to getting a Dx. I have had 2 x MRI’s brain and c spine and now a lower back one, no lesions found but a bulging disc at L4/L5 Gp says this is not causing my bladder or numbness problems. Sure when I go back to see Nuero he will discharge me. Last time I saw him first he said it wasn’t MS, but then wanted to do another MRI to look for MS. My sister has MS with no lesions. Gp thinks it is MS and suggested I ask for a LP, Nuero said even if LP was positive he would not give me a Dx of MS unless I had more major symptoms! I have unexplained eye problems- under eye clinic at local hospital. Numbness, pins and needles, nerve pain, bladder problems, stiff and heavy legs. Balance and memory problems. Brisk reflexes. And fatique. Last time I saw Nuero 3rd visit, when I asked what was wrong, he said I did not need a label as they could treat symptoms! Starting to get stressed about Nuero visit in 6 weeks, and wondering if I should stop trying to get a Dx and just get on with my life! Or should I find an MS specialist? My Gp said she would refer me, but understand they do not have to take referral? Help
Hello there x Bless you - your plight sounds so very familiar! To me & many others I’m afraid!
I’ve been going through it for a few years now with test after test always coming back abnormal - but always inconclusive! Everything else pretty well ruled out so MS is a probable - frustrating I know!
So sick of hospital visits and tests - I often ask myself that question these days - do I need to keep persuing that elusive and definitive label?Eespecially since the drugs they have given me have been awesome and very much keep my symptoms at bay?
So - I have no answer for you I’m afraid! I’ve just got into the mindset of whatever will be will be and it’ll all pan out in the end xxxjenxxx
I’m not going to be much help other than to say that not having a name for what’s going on in your body is very frustrating, Try and stay calm when you see neuro, explain calmly that you appreciate having your symptoms treated, but that him using the word symptom makes you think that he thinks they’re symptoms of a condition x
Hi sounds like you have the same nuero as me! Mine siad he couldn’t understand why I was so keen too put a label on my symptoms. He doesn’t seem to understand that it’s a diagnosis and hopefully treatment I want not just a “label”. His comment really made me angry Good luck, hope you get some answers soon xx
I think personally a “label” is important. It lets you (and others) know what you are dealing with and how to manage it rather than just damage control. Its like papering over damp spots without ever knowing where that leak is coming from. Axx
That’s a brilliant analogy, arwen…love it!!
I am definitely hoping for a definite diagnosis. I feel I need it so I know I’m not going mad and imagining things, and also I’m hoPing I may get more understanding and support from my GP etc if I have a definite diagnosis. It will also help being able to tell my employers, and, if I do end up losing my job, then I’m sure things will be less complicated when applying for benefits etc if you can cite a definite diagnosis.
Also if you get a DX at least you can claim on any insurance policy’s you may have,. Sorry I know this seems a bit cold but if your unable to work , need it Gray
[quote=What’s wrong with me]My sister has MS with no lesions. [/quote] How did your sister get diagnosed? Didshe have a positive LP? Sorry, I had to ask…I’m not surprised you’re confused!
I hope you work things out soon
Hello that must be so hard not knowing what’s causing your symptoms. You need to explain to the neuro why it’s important though - they obv just don’t get it. I was struck by what you said about your sister having ms and no lesions?? I thought the defining feature is ms was more than one clinically significant lesions disseminated in time and space? So now I’m really confused! Will keep fingers crossed you - hope it goes better next time C
Dx 18 years ago on symptoms, Dx as PPMS first, quiet often PPMS people do have clear MRI’s. she had a few bad years at first and then Dx as RRMS, never have a LP.