Im due to see neurologist a week today to finally(hopefully) get a diagnosis. I’ve been waiting 8 weeks since LP and other blood tests and the closer it gets I’m actually terrified I get palmed off again. The last letter he sent stated that blood work all ok csf negative for bands however up to 10% of ms sufferers have negative results and we will discuss at appointment. I’m getting myself worked up either way obviously having ms is what nobody wants however I just want closure with all this waiting and worrying. Be given proper medication to ease symptoms and try and move on with my life. I’ve been in limbo land for two and half years which is nothing to others experiences however I’m struggling to cope with always being not well with no answers. I feel like a total failure to my husband and daughters although they’ve been brilliant it’s me that can’t handle not knowing I’m definitely not a patient person this I have learned.
Hi! I’m a year and a half into a similar situation as yours. I too I’m dreading that the last bloods will all be negative, and awaiting a nerve conduction study. I try to not let it take over my life, but it’s difficult. I can’t do anything the way I used too only 18 months ago. Like you, I just want to put a name on this and do something about it.
I so hope you get an answer, over 2 years is too long to live with symptoms and no diagnosis. But having no oligoclonal bands in CSF may mean you still don’t get a diagnosis. You don’t say what the results were from your MRI (I’m assuming you’ve had one). It sounds like it all hinges on your MRI plus having at least 2 relapses at different times.
I’ll keep my fingers X’d for you. I can totally understand why a diagnosis of MS is better than no diagnosis at this point. What you need is some label to hang your symptoms on, plus effective DMDs and symptomatic drugs as well.
If you don’t get an MS diagnosis, you need to get some answers as to what else could be causing your symptoms.
Sorry should have mentioned I had MRI in June showed lots of lesions on brain but nothing on cervical spine. I believe I’ve had at least two relapses this year alone but tbh don’t know what exactly is a relapse as most days are bad always something playing up I probably have a good week every month. Three years ago before it all started I was walking my dogs anything between 5-10 miles a day to barely walking a mile now. Just so frustrated atm! Last time I seen neuro he said probable ms due to history over the years had first ever neurological incident when pregnant 14 years ago when left side went numb, couldn’t speak etc. and was hospitalised. I was told then it was migraines so over the years everytime I’ve took unwell I’ve put it down to that. Just last few years been terrible symptom wise. Hopefully get some sort of answer next week thanks again x
hello I am Rosie and I have been on the forum for a couple of days ,so have just been getting through some posts.spied your and it hit a nerve with me.I had Breen I’ll for a long time you name it and I had it.Was robbed of nearly all my 40_50,years of age.they kept telling me I had fibromyalgia for the past 14 years never had an m r I so was just left to feel like a deranged woman I then took what they said was a stroke in April 2016 they took m r I and surprise surprise I had active m s and being greedy I had 4 lesions.if it had not been for my likely John(hubby)I think I would have ended it all.
Others are probably saying to themselves not that idiot going on about Hughes Syndrome again.
It’s only a possibility but is a complaint that mimics MS symptoms the main difference being headaches can be worse and constant, HS do cause lesions as well.
That is terrible they way you’ve been treated! I hope your getting treated better now that they’ve finally investigated properly. I think doctors just see women and automatically think fibromyalgia or mental health problems it’s terrible. I actually had to report my previous g.p as he was so unprofessional and thankfully new g.p. referred me to neurologist.
Thanks for the link I’ve never heard of that before and love new knowledge Unfortunately I have been diagnosed with rrms in October but the similarities are unreal just that when I had migraines there wasn’t really any pain just sensory symptoms. My neuro did say he checked for mini strokes etc. but I’ll be mentioning it to him when I next see him as you say you never know.
I probably have a good week every month. Three years ago before it all started I was walking my dogs anything between 5-10 miles a day to barely walking a mile now. Just so frustrated atm! Last time I seen neuro he said probable ms due to history over the years had first ever neurological incident when pregnant 14 years ago when left side went numb, couldn’t speak etc. and was hospitalised. I was told then it was migraines so over the years everytime I’ve took unwell I’ve put it down to that. Just last few years been terrible symptom wise. Hopefully get some sort of answer next week thanks again x