Last reply 2 years ago
First Post- Diagnosed a month ago

Hi all,

It’s my one month “anniversary” of my diagnosis and so far so good, I think. I first experienced symptoms in June of this year. I had some tingling and numbness in my left foot for maybe a week and then one morning I woke up and the feeling was gone from my foot and had moved to my left hand. About a week after that, it spread to my right hand as well and hasn’t left since. So basically, I just have tingly hands 24/7. The feeling varies in intensity but is always there in the background. I have no loss of strength or anything like that- so far its just a feeling. After a CT, some MRI’s, and finally a lumbar puncture with an MS panel, I was diagnosed with RRMS. To say that these past six months have been a whirlwind would be an understatement. I started Copaxone a week ago and am doing the 3x a week injections. My side effects have been extremely mild for which I am grateful. Mentally I am okay- for the most part. Warning- a little negativity and self pity ahead- I struggle when I start to think of the future and the uncertainty of it all. I have an amazing support system and a loving partner who is ready for whatever road this takes us down. This is reassuring but I’m still nervous for the future. We want to get married and start a family (maybe next year) and every time I think about that, I’m hit with this mental road block. Would it be selfish for me to have a baby that I may not be able to take care of in a few years? Would it be unfair to put that responsibility in my partner’s hands? His answer is always “whatever happens, we will figure it out” and I know he is right. Are these fears normal? I’m sure I’m still in the process of accepting everything and processing all of the emotions. I try my best to just live in the now and act normal but I’ve always been a planner so this is hard for me. I’m thinking about starting a low dose of anxiety meds just to help take the edge off. I’m also considering some sort of yoga or getting back into painting. Any suggestions or advice would be greatly appreciated. Thank you 🙂

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vixen
2 years ago

Hello you, what a lot you e been through, but how lovely you have such a great partner! I think all your fears are absolutely spot on, but it seems that you have a good, balanced view so well done for getting through as well as you have!

I would honestly say, having been diagnosed myself this year, that even though I have emotionally and mentally processed the diagnosis, it has taken a year really for me to understand what I really feel about myself and my diagnosis. I haven’t told everybody yet because I had the feeling that I needed to be fully in command of my feelings first. We all have worries about the future, but because of all the intense research and development going on, somebody young like yourself can afford to be positive about what course your life might take, including decisions about children etc. But allow yourself the time to let everything unfold and settle. MS doesn’t need to ruin your dreams ever. It’s just that we have to become cleverer at finding alternative ways to make them happen sometimes!

Honestly, only a few decades ago, the disease could take a lifetime to diagnose. There was no treatment and no ‘absolute’ understanding. One thing that other Shift users would agree on, is not to vet-Google, and only use official sites. You will find the search engine on here really useful. It’s great that you’re already on medication and under care and observation.

I hope you get helpful responses. Enjoy all the yoga and panting you’re going to do! X


stumbler
2 years ago

@alyson0410 , apprehension about the future is not just restricted to MSers. Nobody knows what the future will hold. It could be good and joyous or bad and disastrous. But, that’s life.

Shift.MS has a bit of a motto, which is pertinent to this. It’s, “MS doesn’t mean giving up on your ambitions, just rethinking how to achieve them.”

As @vixen mentions above, it is not unusual for it to take a good 12 months to fully understand the diagnosis and what it does and doesn’t mean. It’s a bit of a rollercoaster ride, so be patient with yourself.


nutshell88
2 years ago

Hi hun
You are so young and feeling shocked is normal but forget the world and everything that pictures MS as a ghost or as cancer or something
I was daignosed in age 17 didnt know english then i was in highschool andcwas able to finish uni and live work/study in scotland for three years
Im still walking and kicking i can still dance swim travel and i still have a job
I dont even waste a moment in worries its my mentalety i think it kills the brain if we do
MS is a silent illness coupd leave you for four years might cause annoying signs but these signs could happen by wearing tight shoes or something simple like that dont think about it ever as a threat you lead it. Thats how you can avoid symptom worries are in the brain and so is MS dont harrass it and upset urself
I believe everyone who over worry about ms is overdramatic its nit daibetes or cancer it will never take your soul i appreciate that.

Be safe hun enjoy your age you can have a partner have kids study itvwould never stop you


californiadreamin
2 years ago

hi @alyson0410

I noticed you are located in IL. It seems you have a lot of sorting out to do with your MS and treatment as a priority and as others have mentioned you will get more comfortable with your situation. I am wondering why your dr starting you on Copaxane or if that was your choice? Its important to know what the trade offs are with each medication. You are located near some really good MS Centers as well. One in particular is about a 5 hour drive but its Ohio Health and they do remote appointments as well. Anyway, a number of medications are effective even if you are trying to have a baby. There are a lots of options, but its important to get the right care as a priority.

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