It's been a long 8 months.

Good afternoon! On 5th Nov 2020 I woke up with the most strange sensation in right leg - the full length of it. Like it was on fire from inside out, weird tingling, numb foot and so on. To this day it is the same, I’ve had no respite from this although it has eased off slightly. Walking is difficult, leg feels so heavy and stairs are a chore. MRI brain normal, MRI spine shows inflammation at C7, lumbar puncture showed non specific inflammation also. Been diagnosed with Clinically Isolated Syndrome, but is it normal for this to be ongoing for over 8 months now? I’ve to do repeat MRI in August and see neurologist in October. I’m not taking anything for this, not sure if I can take anything without a diagnosis? Any thought from anyone would be greatly appreciated. Thanks.

I posted this 11 days ago, and no reply from anybody out there. 70 people have viewed it, but zero responses. It’s enough to put a person off asking any more questions.

I’m sorry you’ve had no responses. I’m unable to answer your question except to say that ive been having numbness in my RHS esp leg, for a few months now. I’m currently awaiting a neuro appt. I had a clear brain scan this week. Hoping they do spine scan and LP.

I hope you manage to get some clarity as to your diagnosis. I’ve read others say that neuros are moving away from the “clinically isolated incident” as a diagnosis. Hopefully your nest review will mean a proper diagnosis and treatment.

Keep asking questions. It’s possible folk have not seen your message due to the format of the site. Others who are reading may just be unsure.

I’ve had a few helpful replies from kind folk on here. It’s a nice place to come.

Kind regards

Winnie

hummingbird, I’m guessing that sometimes it’s difficult for people to reply to some of the posts on here as it can be hard to guess, let alone diagnose what’s going on :—)

But, you’re definitely not alone in the situation you’re in - a lot of people do chip in with their advice and I’m really grateful for that, especially as they’re going through the same things and I really admire them as I really don’t know how they cope as I’m really struggling.

I’be been struggling to get answers from any professional since Christmas and everything keeps being referred back to ‘it’s probably down to your arthritis’ - even the numb, burning, tingling legs and feet.

After having a nerve conduction study a few weeks ago and the results being normal, I’ve taken advice from people on here and writing down all the symptoms and things that have happened in the past ( like being hospitalised with a migraine a few years ago) that may or may not be connected and I’m tootling off back to my GP to see what’s next.

Although only diagnosed with arthritis, I have been given Amitriptilyne which has taken the edge off the symptoms and has just been upped dosage wise to see if it can make a difference, so it may be worth asking about that.

Good luck with the neurologist in October - you’re in the system now, so hopefully you can start to get some answers. :smiley: