@Henriette 

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Henriette

Easily frightened

Hi. I am also new here. Age 49. Apparently i've had ms since the age of 18 but it was only picked up formally in December 2016 when everything all at once went wrong and i was admitted for possible stroke. Only to find ms with lot of old scars and also new active ones. Was informed i am already on 6 of disability scale. But in Feb 2017, after the cortizone treatment in hospital went back to a 2 on the scale. I've deteriorated a lot the past few months. Been on Rebif 44 interferon beta 1a since may. I was never really scared by anything but the past few months i've been driving my husband and colleagues crazy because i get frightened easily. Is this normal for ms patients? Wonder if it has anything to do with Lhermittes because i cant stand the electrical shocks because i never know touching something whether it is real electricity shocking me or is it myself. Sorry for the many questions.
@Stumbler

Hi @henriette and welcome. Your path to diagnosis is, unfortunately, not unusual. It does seem to be improving generally though for new cases. This recent deterioration, is it old symptoms or new ones? I'm just wondering whether this is relapse activity. There's a good definition of what is and isn't a relapse here:- https://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms If it is relapse activity, has it been occurring since you started the Rebif? If so, then the Rebif needs to be reconsidered, possibly for a stronger, more effective treatment. As far as L'Hermittes is concerned, this is just a symptom of the condition. You just have to be aware when you tip your head down, chin towards your chest.

@Henriette

Thanks for the response. L’Hermittes seem to be more severe when i need to go to the bathroom. Seems water and electric shocks dont go well together 🤔. When i saw the neurologist in September (just in passing) i mentioned to him that the MS nurse said that i might be relapsing, but he immediately said no it is not a relapse. Well then i asked him if there is something for the electric shocks, but the pills he gave me (lyrica) almost drove me crazy so i am not taking it anymore. Taking normal pain medication now when it becomes unbearable. My eye sight seems to be deteriorating weekly and sometimes i am deaf on the right side. Two weeks ago i could not touch the skin on my head (left side) for almost a week. Very sensitive. But thats gone now. The "easily frightened" thing, is that also normal? Even if i do not experience the L’Hermittes, it is very traumatic to be a passenger in car. I keep on hitting the "brakes" which does not exist on the passenger side and it drives my husband crazy. I was never like that. I will make an appointment to see the neurologist in Feb or early March. And this weird feeling in my head, sometimes like floating, sometimes everyhing feels so far, like foggy, is that part of me now or will it go away later?