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Newly Diagnosed and has Questions…Help?
How do I know when I need to call a doctor?
Hi everyone, my name is Emmy and I’m 27 years old and I was recently diagnosed with MS (the end of February). The symptom that sent me to the hospital was tingling throughout the left side of my body. After a round of IV and oral steroids the symptom went away. It came back once or twice during that first month, but hasn’t come back since until last night.
When I went to bed last night, my left fingers and the outside of my arm felt a bit tingly. This morning I feel it in my face as well. I…have nothing to go on. I have no idea if this is normal, if I should call a doctor (I’m currently trying to find a doctor that I like — my current one tells me to call with questions, but then does nothing to actually reassure me). I would really appreciate some guidance, please.
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8 Replies
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Emmy…
…After I was diagnosed three years ago, ( age 64 ) I too was left bewildered with so many questions, yet made to wait some weeks as my MS Consultant ( who sent me for MRI scan, and had confirmed my PPMS ) had booked me to go see an MS Specialist Nurse, who I was told would fill me in with all my questions and answers ( told to make a list..)…I live in UK, not sure where you live, nor if the-your system is the same…
My guessing is by now you should be under an MS Specialist…and yes what you are-have been experiencing is normal, a a part of our now MS life-our future…
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Emmy…
…I meant to have added, if you are not yet under an MS Specialist Nurse, I would ask why…
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Thank you so much, it’s reassuring to hear that. I’m in the US (Upstate New York) and I’ve been seeing a neurologist, but they haven’t been too helpful or clear. I’m transferring to a different hospital soon with a whole team instead of one doctor — so that should help. Unfortunately their first opening isn’t until October.
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Thank you so much, it’s reassuring to hear that. I’m in the US (Upstate New York) and I’ve been seeing a neurologist, but they haven’t been too helpful or clear. I’m transferring to a different hospital soon with a whole team instead of one doctor — so that should help. Unfortunately their first opening isn’t until October.
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Hi Emmy,
Welcome to the MS forums.
Most people with MS begin with the “relapsing” form of the disease. Symptoms come and go, they can even vary from day to day. However, it’s generally considered that you’re having an exacerbation, or a relapse, when the specific symptom(s) hasn’t occurred for a month and continues for at least a day.
There’s a very good explanation of the difference between a mild and a serious exacerbation on the National MS Association website. Click here to get to it and scroll down a little to the “Treating Exacerbations” section.
As for your doctor, MS is such a unique disease that it’s really best to be seeing an MS specialist. The Consortium of MS Centers has a directory of its specialists, worldwide, on its website.
There’s a lot of good info all through our MS News Today website. Browse through it, or use the search function to look for specific subjects.
There are a lot of us with MS (I was diagnosed way back in 1980) who are glad to help you. Just ask.
Ed
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Wow, Ed, thank you so much! Those resources are going to be very helpful! The hospital in which I was diagnosed does not have an MS specialist, but the one across the road does. They are also a teaching hospital which makes me feel even better about their MS department. Thank you so much!
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Emmy,
I’m glad you think the info was useful. Incidentally, I know a little about upstate NY. My wife and I went to college (years ago) in Ithaca and while there I worked weekends in Binghamton. I also dated girls who lived in Rochester and Utica. You should be able to find a good team to work with.
MS is much more manageable than when I was diagnosed, back in 1980. Lots of drugs now that can limit progression and even, in some cases, reverse symptoms.
Ed
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I would like to add, if I may? that we in UK only have NHS MS Specialist Nurses so we cant pick and choose as they are relocated to us via, their catchment area that they cover…Here in UK our MSSN’s we have one available for every 400-500 or even 600 MS patients…I have hunted on the web looking to see if we have such a thing as Privately run MSSN’s, we dont, they do not exist…If they did, I would be one of the first to book one, even if I have to pay out of my own pocket, life would be so much worth it…This is another area of our NHS that is struggling…
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