cant cope anymore

Hi guys, well I saw my neurologist today to find out the results of my mri and nmo blood test, despite me having a long lesion on my spine with a scan I had in november the scan I had in april didn’t show it up so I’m baffled to this, neuro said they looked ok but

he going to get other doctors to look at all my scan pics as somtimes there can be blurring or shadows that can miss things out, and the blood test results have been lost so I have to wait for them again, and he wants me to have the dreaded lumbar puncture :frowning: I’m going to wait for blood results first though. He asked me how I had been since my last appointment and I mentioned I’dhad severe pain in the top of my left arm for 4 days which then turned into what felt like a dead arm, also right side of face and head felt numb and my scalp was really ssensitive to the point I could not brush my hair for 3 day’s, and my new symptom is a vibrating I feel in my feet and ankles but he dident seem concerned, he did say that there is somthing damaging my nerves but what I’d just descibed would not be caused by a spinal lesion, I just feel so fed up now, I’m getting nowhere and I’ve had 3 years of different symptoms that seem to come and go, they never seem to last for more than a few days at a time, my feet have gotten that bad that I’m struggling to walk and I have to sleep with them hanging over my bed cause touching the sheets is unbearable, I’m that fatigued I’m starting to slur my words and my friend asked if I’d been drinking, how embarrassing. So I dont no what to do now, should I just give up and try to plod on or do I go back and see my gp.?? please please any suggestions would be truly appreciated

Hi, I’m new to this forum but have been under a neurologist for over a yr now. Very frustrating bring in limbo, first I was dx with fibro but as the yr has gone more and more ms symptoms appearing - MRI only showed few spots - LP was normal but another consultant and gp both say its ms. I had a bad day yest with electrical sensations happening all day slurring words and stumbling like I was drunk, gp phoned and told me which meds to take and this has seemed to have settled the nerves from firing off wrong. I am fed up going to apt with different drs and bring told all different things without a clear dx…

There are various reasons for a lesion to disappear from MRI. Most of these are due to scanning techniques, but the encouraging one is when they disappear because the body has managed to repair them enough for them not to show any more. Unfortunately it’s never possible to repair things perfectly, but it’s often a good sign when someone’s body is capable of doing it as it tends to suggest a better prognosis.

It sounds like your neuro is on your side so, if I were you, I would persevere and have all the requested tests. Lumbar punctures are fine for most people so hopefully yours will be too. The “headache from hell” that some people get afterwards can be better avoided by asking for someone experienced to do it and for them to use an atraumatic needle (you may have to ask for this well in advance though as not everyone will have them readily available), but the majority of people don’t have any problems with the normal procedure.

Re your feet: if it’s hypersensitivity, have you tried silk/satin sheets? Or wearing smooth silk socks? What about neuropathic painkillers? They will help most sensory symptoms. I bet if you could get some of your sensory symptoms under control you’d find it all very much more bareable - it’s damn hard to stay positive when you’re in pain and knackered :frowning:

I hope the new tests finally get you some answers.

Karen x

Hi Sunflower, as hard as it is I’d definitely stick with it and see what your neuro comes back with after speaking to his colleagues. It’s frustrating having to wait for the blood test results again but as each test will either rule something out or rule something in, it’s worth it in the long run. Maybe hold fire (until you have all your results) before making a decision on having an LP done. In my experience the LP wasn’t as bad as it sounds - not pleasant, but thanks to resting afterwards and drinking caffeinated drinks, water and taking paracetamol, I escaped the dreaded monster headache. But it is an invasive procedure so it’s entirely your choice as to whether you go ahead and have it done. I’d definitely speak to someone with regards to some help with your symptoms though; there are loads of medications available which can make a world of difference to how you feel on a day to day basis. I hope things start looking up for you very soon. Good luck! Debbie xx