Whilst going through my paperwork the other day I found my neurologist report to the GP from when I saw her 18 months ago. I’d only skimmed through it and then misplaced it. Apart from being told it was probable m.s and that my left leg seemed stiff I’ve been under the impression that the neurological examination was clear. Reading it thoroughly today it wasn’t the case. The plantar reflex (where the semi sharp object is dragged across sole of foot) showed that my left foot was unresponsive and that my right root had the extensor response which means I had the Babinski sign. I also had increased muscle tone in my legs and brisk reflexes (which is abnormal.) I had an MRI that was reported back as normal but the quality of the images were poor and blood tests carried out were normal. Recently I’ve been thinking it was all in my head and to try and forget about it but when your main symptom is pain such as strong tingling, burning sensations and then turning into cramping and aches it’s quite hard. Now I know that I’m not making it all up in my head I feel a lot more determined to get the diagnosis of whatever it may be without thinking I’m wasting their time. The letter did say that my history and course of symptoms did point to the possibility of an inflammation affecting the central nervous system so I suppose that should speed things up if it is M.S or any other condition because they’re willing to look in to it…
I’m currently still waiting to see a neurologist again since symptoms came back 11 weeks ago. The tingling and burning sensations have stopped now but I’m still getting twitches and eye pain. My legs hurt a lot though. They’ve become quite stiff and I have constant cramping pain. Had a bad week last week though. I kept tripping over when I went to the shops because I drag my feet and struggled with using a pen, picking things up etc. If I do see the neurologist soon and get an MRI will this episode show up? Or would the lesions have repaired? (if it is M.S) I was really hoping to have seen the neurologist during the worst of it because last time she only saw me once I was pretty much recovered.
MS lesions are sometimes repaired sufficiently well to disappear on MRI so it’s a possibility, but if you started with a few lesions I would doubt that they would all have gone.
Hopefully the MRI will be of better quality this time and the neuro will be able to work out what’s going on - because there’s definitely something happening; abnormal clinical exams do not happen with functional conditions!
That’s what I thought. It’s a sign that something is wrong. It’s a huge relief knowing that something showed up. I’ve been so worried thinking I’ll never know what is happening but at least there is some clue. I think I’m going to phone the hospital and find out what is happening with my referal. I wouldn’t be suprised if the GP has forgotten to refer me. I know I sped up my son’s speech therapy referal because I contacted them directly so hopefully it will get things moving for me.
I contacted the patient advice and liaison office at my hospital and found out I have an appointment to see the neurologist on the 21st February. That’s over a month away That means I’m having to wait 16 weeks after my symptoms started this time to see anyone. Surely that isn’t right? It’s not like it’s the first occasion. This is the 4th time I’ve had an “attack” in 2 years. I’ve recovered pretty well between them but each occasion has got worse. I do feel like I’ve been forgotten about.
im glad you’re actually getting somewhere now and that it has given you the confidence to move forward without feeling that you’re taking up too much of their time.
i know when i re read my letter, it read differently to the first time i had read it too. i think you just breeze through it knowing that you’re in safe hands anyway.
i hope that you dont have to wait long for your appt and that it is a positive experience for you.
Thank you so much just for listening and helping. I’m not in contact with my grandad who has m.s so I don’t have anyone who understands what I’m going through. My mother sees M.S as a life threatening condition so I can’t discuss it with her. She is a carer who works in the community and sees those severly affected so she worries a lot when I try to tell her what’s happening. I didn’t know brisk reflexes were abnormal at first until I looked in to it. It shows that there is a lesion of the upper motor neurons. Weak reflexes point to lesions of lower motor neurons. It can be caused by “helping” the neurologist during the test so it can be false but I had the babinski sign as well. I’ll be glad when it’s all over and I know what’s happening. I was planning on studying to be a midwife before it all started but that’s on hold until I know what is causing the problems and if i’ll be better.
That means I’m having to wait 16 weeks after my symptoms started this time to see anyone. Surely that isn’t right? It’s not like it’s the first occasion. This is the 4th time I’ve had an “attack” in 2 years. I’ve recovered pretty well between them but each occasion has got worse. I do feel like I’ve been forgotten about.