Forum

No firm diagnosis but probable MS

Hi guys I joined the site to hopefully get some support from people going through the same thing! I’m 28 now and when I was 21 I had my first episode. Started off with Optic Neuritis in my left eye and quickly developed to pins and needles all down my left side, loss of my reflexes, then left sided weakness. Ended up being hospitalised for emergency MRI and LP. Their initial theories were MS, brain tumour or Chiari Malformation. I had a horrendous reaction to the LP and was completely bed bound and in agony for more than a week. I self discharged 4 days after the LP cos I couldn’t deal with being there any longer. They were going to treat me with IV steroids but I’m needle phobic. Took 9 weeks to recover from this episode. At 3 month check up a neurologist who didn’t even see me in hospital gave me a diagnosis of Migrainous Phenomenon. He said they couldn’t say I definitely didn’t have MS but MRI was clear so if I had another episode they would give a diagnosis of MS. 2 years ago I had another episode which started with pins and needles and weakness down my left side again. Once again my reflexes were poor and I couldn’t balance at all with my eyes closed. Saw a different neurologist as the prior one had retired, who ordered another urgent MRI. This MRI also didn’t show any lesions so neurologist put it down to stress and once again said if I had another relapse they would diagnose MS. Then about 4 weeks ago I started noticing my balance wasn’t so great and I was feeling more tired. My partner also pointed out around this time that i was kicking my left leg out when i walk. 5th June I had a bad migraine with left sided weakness and had to take an injection for it. Then last Tuesday I had a 2nd bad migraine again needing an injection. Between the migraines I never regained my balance. I have left sided pins and needles, weakness and heaviness in my left arm and leg, extreme fatigue to the point where even cooking dinner leaves me exhausted, my balance is shocking and I keep falling into the walls and tripping over, and I keep dropping things. Oh and my little toe on my right foot has been numb for about 3 months. I went to the GP on Friday and she did a neuro exam and said my reflexes in my legs are practically non existent and my left side is marginally weaker. She said its probably the 2 migraines so close together that’s done it and signed me off for 2 weeks to rest. However we are almost at the end of that 2 weeks and if anything things are worse. She said she would refer me back to a neurologist if things don’t improve so I’ve booked another appointment with her but the earliest was Wednesday next week. I’ve kind of resigned myself to the fact that I probably do have MS but my family are being less than supportive. My mum calls me a hypochondriac and says its all in my head. My partner bless him is lovely thank goodness. Sorry this ended up being a bit of an essay! Any thoughts welcomed :slight_smile: x

Hi Kit,

I don’t have any thoughts for you just to say I’m going through very simmilar things with MRI’s, LP’s, Optic Neuritis, Vertigo and now tingles. I have only been going through this for a couple of months now and like you my family are less than supportive. Infact they are out and out rubbish. I told my mum I might have MS and she said “oh”. Be greatful of your partner and use the love and support that S/he offers to comfort you.

I understand where you are in terms of limbo, I’m lost there too and can not find my way out without the help of doctors who seem to want to make me wait forever and a day. I went to my GP and she referred me to a therapist who I could talk to and who showed me some cognitive behavioural therapy techniques to stop stressing out. It’s been really helpful for me, Your GP surgery may offer a similar service I would recommend it if they do.

Good luck with your MS journey, I hope someone can give you answers soon and stop you feeling so poorly. Please feel free to message me if you need someone to talk to, I know how you are feeling and would be more than happy to offer an ear where I can.

Take care

Emma

Just copying this across from the other bit cos for some reason it posted 3 times!

Just a quick update, spoke to my migraine neurologist on the phone just now. She thinks this ‘relapse’ is a lingering hemiparesis from my latest migraine. Explained all my other symptoms and the fact that they are worsening rather than improving. Now awaiting another MRI.

Also a totally weird question…does anyone get a prickly sensation all down their legs when they sit on the toilet? X

Emma thanks for your message :slight_smile: means alot to know I’m not the only one going through the same thing. Went back to my GP today because things have just been getting worse and worse. The pins and needles have spread to my right leg now and have prickly sensations all over my scalp. The GP has faxed a letter over to my migraine neurologist to ask her to review me urgently. His opinion is this certainly sounds like MS x

Hi, I’ve read on this site that migraine can be the cause of many MS-like symptoms but have no direct knowlege or experience.

Clear MRI scans do not indicate MS but do not rule it out but part of the criteria for DX of MS is that nothing elso should explain the symtoms.

Here’s hoping the migraine neurologist can clear things up.

Thanks. I do get hemiparesis with the migraines but not the extra symptoms and certainly not 2 weeks later. Today’s new fun is intense itching like a million bugs are crawling under my skin. Started on my lower arms and has now spread up my arms, across my shoulders, down my back and down the fronts of my lower legs. Now look like a giant pink marshmallow cos I’ve plastered myself in calamine lotion to try to get some relief…so far I just look idiotic!