brickbybooks 21/04/17
Last reply 1 year ago
MS Nurse

Hi everyone,

I just wanted someone who has some experience’s advice. I met my MS nurse for the first time today and opted for avonex injections once a week for my DMD. Since my last relapse in which I had optic neuritis and tingling. I’ve had a multitude of new symptoms and worsening of old ones. For example, I’ve experiences the Ms hug twice in the last two months, I struggle to get out my words and am forever struggling to finish a sentence – so much so that people at work are even finishing my sentences to try and prevent some embarrassment. I also have zero balance and am regularly wobbling or losing balance completely even just while standing still. I still tingle every day, sometimes even have burning sensations in my extremities and face. I have no grip in my right hand, the bottom of my back and the top of my neck feel stiffer than a board and regularly feel like someone is stabbing me in those spots.
I explained all these things to the ms nurse and she seemed to brush it off and just said ‘oh these are probably just remnants of the last relapse’. I feel like utter rubbish coming out of that appointment as I just feel like I’m not being taken seriously.

Am I overreacting?

Thanks in advance.

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shazzyp
1 year ago

No Georgia, I don’t think you are. An MS nurse (I feel) is supposed to be there to help support you, point you in the right direction, and ensure that you get the appropriate help. Not demean your symptoms and make you feel that you are making a fuss about nothing. I have a group(3) of MS nurses who are contactable via email or phone. If you don’t have another more sympathetic nurse, then make an appointment with your neurologist and talk through your current symptoms. Maybe your medication needs tweaking . It should help regardless and make you feel that someone takes this seriously. MS is not a cold and is taken on board by the medical profession. Good luck x Hope it gets sorted for you


cameron
1 year ago

She may know her stuff and have done all the reading, but with the attitude you describe, she’s in the wrong job. I agree with @shazzyp -you need another angle on this. Interesting that you were offered the class of drug that is now seen as the least effective……. are you sure you know sufficient about the alternatives?


hank
1 year ago

i agree with both of the above, M.S. nurses are there to support you when you need help or advice , or just someone to talk too. Although having said that i have been diagnosed with P.P.M.S. for nearly 7 years and dont even know who my M.S. nurse is or even if i have one, so i suppose there are differing standards and types, best of luck for future and hope things work out for you .

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