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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 littlekit and welcome to the forum…

Well my goodness you have had a whole series of problems!

OK… I’ll be honest with you. The symptoms you describe do sound very MS-like. However there is no one on here who can tell you if it is MS.

There are literally hundreds of conditions that present the same symptoms. Seeing a neuro again at this time is the very best thing you can do… so see that GP and say you want the referral.

It is possible that lesions (scars on the brain) that were not showing last time might well be showing by now. Even if lesions are showing they still have to fill a certain criteria called the McDonald’s Criteria.

Read the ‘sticky’ at the top of ‘newly diagnosed’ by Rizzo called ‘A brief beginners guide to the brain and MRI’. Scroll down to read about the McDonald’s Criteria. It will show you how the lesions have to present in a certain way.

For now, rest as much as you possibly can and get that referral. Getting a dx of MS can take some time, so prepare to be patient. Some people get it very quickly but it’s not always easy to dx… esp if the MRI is clear.

In terms of your mother, unfortunately this is an all too common problem. It’s really a case of denial. Your mother simply doesn’t want to believe that you have a long-term condition like MS. I’m glad your partner is supportive… that can make all the difference.

Try and remain open minded… it still might not be MS but one of many conditions, and some of those are very easily treated.

This forum is a great place for people like yourself as so many are going through the same ‘limbo’ stage. So come on here and ask questions and you will always find support.

Take care and I hope you get some definite answers very soon,

Hope this helps,

Pat x

Thanks so much for your reply :slight_smile: I am certainly going to ask for a referral back to neurologist on Wednesday. I am currently under a migraine specialist who said my optic discs are both pale and I’m currently experiencing blurry vision and flickering white lights when I close my eyes. It’s such a relief to know that other people are also in this limbo and that there is support here :slight_smile: x

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

First of all im sorry to post on here but it hasnt been added yet.

I am a anxious 38yr old male.

My first episode of feeling unwell was back in 2008/9 where i went through numerous health problems (for 2yrs), refered to a gastro consultant and neurologist trying to find out my the cause of my problems. Brain/liver scans and numerous blood tests came back negative. The Gastro consultant put it all down to a virus …

Everything was fine till about 4-6 weeks ago when all my skin became very itchy (skin is now ok), first thing GP did was blood tests for Liver etc to rule out problems and again was ok. Then on Monday this week my right eye went all blurry for about 10-15 secs (was not painfull) and did correct itself straightaway. I immediately went to the opticians to ask them to have a look and again was happy with what they see. I did visit my GP in the evening and basically said i would like to see a neurologist.

I visited the neuro guy Tuesday this week telling him my concerns about MS, however after all his initial checks (physical/visual) his words were ‘i do not have a suspicion of MS’ so i left a happy man.

Yesterday i started to get the occasional pins and needles in my feet/hands. This would last anything from 30secs to 5minutes. Again highlighting my concerns. I have now booked an MRI of the brain tomorrow even though the neuro consultant thinks i should save my money.

I am an extremely anxious person so i am not sure what to do as i am well aware anxiety can cause numerous issues such as the ones i have been experiencing. I have also booked in with an anxiety counsellor to help calm my worries.

My dilemma is … do i trust the expert that knows a hell of alot more than me or do i keep persuing it and £500 for the scan?