neurologist baffled

Hi hope everyone is well as can be. I was just wondering if anyone else has these symptoms. I have episodes where I loose full body coordination and my speech goes slurred Almost like if I have had a stroke. And if I go to get up my knees buckle from under me. I need to be helped up off chair etc. These episodes last 3 to 4 hours. Then speech etc comes back. I used to take about 4 of these a year. I have had 9 episodes in past 6 wks. Also been in hospital twice in past 10 months each time been put on steroids. Also been told was relapse. I had appt with neuro today. First I have seen him a year. He is totally baffled he said these episodes are not ms. Yet according to ms nurse she said they where ms flare ups. There is no doubt I have ms. Was diagnosed 5 yrs ago, have everyday pains and virtually no balance. But he has no explanation to these episodes. He said doesnt look like change in lesions, but he will have to go bk to hospital look over mri’s consult his collegues. He has also told me to stop taking tecfidera and pregablin with immediate effect. As my white blood count is dangerously low. got blood taken again today. To go bk in 2 wks get it checked again. Then when back to normal he will start me on something new for pain. I have another appt with him November, he will then decide if he will put me on any drugs for ms. Until then I have to put up with everything.

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I had the same symptoms 10 yrs ago but mine came with a warning pain in my head, like an ice pick headache that sent spasms down my right side and turned my speech into a slurry babble. However mine lasted 10 -20 mins including recovery. I auptoAt my worst I was having up to around 20 a day! lso completely lost my cordination, as a tennis coach with excellent coordination it was a terrible blow. It was with that relapse that I was diagnose. Yours sound very similar to my symptoms but taking longer to recover. Pm me if you want to know more.

Thanks sallum. I take headache afterwards along with extreme fatigue. But neuro says this not ms symptoms as the coordination thing only last 3 hrs. Even tho the fatigue and headache continue afterwards. I am more confused now than I have ever been.

Hi Violet, think a lot of us can relate to these symptoms, trouble with neuros if its not in the text books they don’t get it!!! They seem to think we should all follow a pattern & when we don’t “it can’t be ms”!!! Hope you feel better soon Tracey x​

I thought you might be describing paroxysmal attacks - they come on suddenly with MS but last only a short time and then disappear as suddenly as they came. I think they are thought to result from nerve impulses being misrouted by bridging across to an adjacent nerve fibre at a lesion due to a lack of insulation (myelin) between them. However, I don’t think they are supposed to last more than a few minutes at most, so I guess that is why the neurologist is puzzled and isn’t attributing them to MS. On the other hand I haven’t come across an explanation as to why these could only happen for a matter of minutes.

I get these attack now and then mine only last a few minutes but recovery takes a couple of hours sometimes less but if I am out and about it brings me to a stop for a while g

Have the ice cold trickle feeling in my head every few months. Stops me in my tracks. Scary feeling when you feel something happening in your head. Loss of co ordination last thankfully no more than a few minutes for myself. Bad enough balance without it getting worse.

l feel strongly that all Neuros and MS nurses should be compelled to read all of our posts. They would soon learn more about the life of someone with MS then they get from text-books.

l have joined the facebook group Biotin for Progressive MS - and apart from our excitement about Biotin - the members - from all over the world have been talking about their MS experiences and how their Neuros treat - or not treat -them. l am learning a lot from them.

One disturbing fact l read was - the CEO of the US MS Research- a charity- earns more then the President of USA.