@cwe33

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cwe33

Newly Diagnosed.. I think

Feel like I’m in limbo land at the moment which is frustrating. I have an appointment with my neurologist on 20th Sept to discuss my lumbar puncture results, although he’s sent my GP a letter with results and copied me in. MRI showed 4 lesion on my brain Lumbar Puncture confirms “multiple oligoclonal bands” in my CSF but none in serum. My main symptoms were fatigue and weakness in my left leg and arm which has restricted me from running. I also experience a burning sensation and pain on the soles of my feet. I appreciate I should be patient but I’m struggling as it’s nearly a month wait. I think I meet McDonald criteria?

merfield

@merfield

@cwe33, you’re in Limboland which is worse than an actual diagnosis. You know what you’re up against then. CNS symptoms are v difficult to diagnose as so many conditions are similar, so it seems it’s a question of elimination . I waited several years for mine. 😐 Bear with them Take care xx

ItsMewithMS

@ItsMewithMS

Consider a second opinion as well if the neuro isn't a "MS specialist"...it is a pretty big diagnosis and you will want someone you have confidence in...

Stumbler

@Stumbler

@cwe33 , it is frustrating and, as far as recovering from a mystery condition, it's counter-productive as the stress of the situation makes everything worse! September 20th is only three weeks away, so sit back and take a breath. Getting a diagnosis isn't a sprint, unfortunately. So you need to relax as you plod through this marathon. It's a good call by @itsmewithMS above. Neuros tend to have a specific area of interest/speciality, so ensure the speciality of yours is MS. If not, ask who the local expert is and ask to be referred there instead. Good luck

hooperka

@hooperka

Oh I feel you, as I was in a limbo for over 5 months due to relocation, changing hospitals etc. But it is worth a wait and definitely not worth you stressing too much about it. I'm sure that you will be quickly referred to a MS specialist if your neurologist isn't already one and get everything explained to you and told what to do next. Stress is making it all worse, so try to keep calm. I hope these 3 weeks will go quickly for you!

JoanneK

@JoanneK

Def agree that having the right medical team to support you is vital. My first neurologist was as much use as a chocolate tea pot which I now believe was due to his specialism being Parkinsons. Plus I honestly think some neurologists have had a personality bypass as part of their training because some lacked personal skills ... so find a medical team that you trust. My current neurologist is F-A-B-U-L-O-U-S (to quote "Strictly"!) and the team of MS nurses are totally amazing ... which makes such a huge difference that I cant even put into words. Its a slightly longer journey but well worth the time and fares. Sadly none of them have a magic wand but if you can get DMTs, physio etc it makes such a difference. I will be honest finding you have MS is never going to be easy but having good medical back up will make it manageable. I agree that uncertainty is difficult - the sooner you have the facts the sooner you can make decisions & plans. Stress is definitely bad - for me its like the power switching off and everything is so much worse if I allow myself to get stressed. So try to be patient and if you have done everything you can for now I suggest you try to enjoy the last few weeks of summer as much as you can.

ColettePage

@ColettePage

@cwe33, shame you haven’t appealed during covid cos my assessment was over the phone. They may still be operating like this too, might be worth giving it another go if you feel up to it. I think ms nurses can advise or someone at your local CAB (if you can get an appointment with someone there!) I’m PPMS & diagnosed during lockdown following an urgent mri & getting the result over the phone wasn’t great but that’s how it was. I’ve pretty much had to fumble my way around everything & almost fight for advice cos my neuro centre ‘closed shop’! I did however on my pip form describe my ms as everyday is my worst, that I don’t have good & bad days & that its progressive - clue is in the title! Colette

cwe33

@cwe33

@colettepage Yeah, I maybe should have appealed, think I could still do it as long as it’s within 13 months. I think I binned the letter. I was struggling to come to terms with my diagnosis and then to be told by the assessor that I didn’t look tired and my symptoms didn’t meet the criteria. Maybe I didn’t explain my issues well enough, find it difficult.

cwe33

@cwe33

Thanks to all the comments in this thread from 12 months ago. I went AWOL from the forum after being diagnosed, taking time to come to terms with it all.

ColettePage

@ColettePage

@cwe33 Being quiet on here is your prerogative and here no one will judge you for that, we’re all different just what we have in common is we all have it know someone with some form of ms. I knew I had a neurological problem way before seeing a consultant but had thought it was MND. Getting told it was ms was a relief but I’m much older than you & although trying to come to terms with my diagnosis has been a rollercoaster, maybe maturity has helped me?? just ring dwp and explain you were struggling with your diagnosis, threw away your letter & feel you should now appeal. If anything they aren’t to know your condition has progressed ‘as I said -clue in the title’!! It’s worth giving it a try, there’s always help on here. PM me if you want to know more.. Colette