New here - Could really use some people to talk to!
Hi, I'm new here (well my first time posting). I'm a university student who despite being around MS all his life, has no good ideas on how to cope with it nearly 2 years after diagnosis. Got the lovely gift from my mom and though I've always helped her (became one of her health people at 18). The one thing I asked for was to be able to help her but ever since I was a kid I had this nagging feeling I'd end up with it too. Not the most optimism but guess karma likes to hit us regardless heh.
Due to her condition leaving her wheelchair-bound and stuck with pretty much every MS symptom possible and after seeing the progression...I know a fair amount about the disease but even after all this time I have a hard time coping especially since symptoms get bad. Guess I need that more than anything since my only exposure to the disease was my mom and the only good I hear is on the internet, I need some positivism with my symptoms worsening.
Dxd. at 19 with CIS and MS itself later last year (RRMS). Been on Tecfidera since early this year and 6 months later one new lesion showed on my MRI last week but shrinkage on the others was present. Mixed results but I'm debating a switch even though I really like the oral med and have no side effects from it, don't think I could handle more injections either. Worsening symptoms called for the MRI and it puts me under a great deal of stress. Though I know many have it worse, I am stuck with this for my entire life without even getting to live any of it first. Topping it off, its getting worse already and if I can avoid anything I'd like not to be in a wheelchair till much later (I know it doesn't happen but I have yet to see a male example of someone getting it this early without ending up with one at least for awhile).
Normally I just had tingeing, numbness, and occasional lack of feeling in extremities and extreme fatigue. Things just keep getting worse on top of not knowing if MS is the cause (don't see what else it could be). My neuro (MS Specialist) doesn't see any activity on my MRI now and she tries to reassure me I won't end up in a chair but that doesn't help me now nor does it reassure me with symptoms.
Currently I'm having pretty extensive mental fog (I literally read my textbooxs and forget concepts the next day and stumble over what I say often neither of which are normal) using notes on my phone to try and compensate but its not helping academically nor are all the doc visits. Within the last few weeks I've been having severe extremity issues too. I find myself banged up from clumsily walking into walls more and more often and am so tired and heavy by the end of a walk around the block sometimes...it gets downright ridiculous. To not see any brain activity makes it even more annoying.
I see my neuro Monday and HAVE to figure out something medically because I can't have the disease running my life for this long nor this early. I know medications are limited but if there is one thing I am optimistic about is that they exist. I am on something for fatigue but need to look into something else probably. Headaches but I think they're caused by too much advil usage so I need to wait till my botox kicks in to know for sure. Most importantly the symptoms involving my motor skills and brain need to be bearable. So much twitching and tingling to the point I need to stop after a block isn't cool at my age nor tolerable. Need to find something to help with that...at least the heavy feeling and spasms. Same for mental fog but not sure what can be done there...something. Better fatigue medication might help.
But if its this bad already I don't see much of a future...one not ruled by MS and a chair anyway. Symptoms need to be managed anyway and they can. Some medications can even halt and reverse damage potentially and only a small percentage of people end up not living a normal life or chairbound because of MS anymore. Those are the only words that heard when diagnosed and I need that to be a reality.
In general I am an optimistic person but this disease progression and fall in my academics has sucked that out of me in record time. I want to help people and show them (especially my family)
that someone with MS can live a normal life, have a family and such even with MS and that they don't need to worry.
After I get my symptoms in check I am going to try and make it to my local MS support group again. I'm byfar the youngest one there despite living in a city but hopefully I can get some of my sanity back. If not, I'll try contacting the MS center and talking with someone because anything can't hurt at this point. But at this rate I'm considering dropping college and just moving and working in a job that hopefully I don't totally hate just so I can live the few years of my life I might have left. They'll be annoying anyway so should probably do it before it becomes unbearable.
I know I'm being lengthy and coming off as really negative (terrible intro...not like me at all and people point it out to me consistently which is why I know I need help). Have never been depressed or suicidal (won't ever be) but at this point I'd rather feel nothing at all.
I'm grateful I can communicate what's wrong unlike my mom but if I got to even half her condition...I couldn't stand that happening. Ever. I've read good things online, people even stopping MS in its tracks for a good 20 years and such. I'm going to see what I can do on my own. Start strength training again, develop a good diet, take some supplements, eventually get a dog of my own...if that doesn't fix these issues then I don't think anything will. Open to anything...even sharing experiences can't hurt.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Due to her condition leaving her wheelchair-bound and stuck with pretty much every MS symptom possible and after seeing the progression...I know a fair amount about the disease but even after all this time I have a hard time coping especially since symptoms get bad. Guess I need that more than anything since my only exposure to the disease was my mom and the only good I hear is on the internet, I need some positivism with my symptoms worsening.
Dxd. at 19 with CIS and MS itself later last year (RRMS). Been on Tecfidera since early this year and 6 months later one new lesion showed on my MRI last week but shrinkage on the others was present. Mixed results but I'm debating a switch even though I really like the oral med and have no side effects from it, don't think I could handle more injections either. Worsening symptoms called for the MRI and it puts me under a great deal of stress. Though I know many have it worse, I am stuck with this for my entire life without even getting to live any of it first. Topping it off, its getting worse already and if I can avoid anything I'd like not to be in a wheelchair till much later (I know it doesn't happen but I have yet to see a male example of someone getting it this early without ending up with one at least for awhile).
Normally I just had tingeing, numbness, and occasional lack of feeling in extremities and extreme fatigue. Things just keep getting worse on top of not knowing if MS is the cause (don't see what else it could be). My neuro (MS Specialist) doesn't see any activity on my MRI now and she tries to reassure me I won't end up in a chair but that doesn't help me now nor does it reassure me with symptoms.
Currently I'm having pretty extensive mental fog (I literally read my textbooxs and forget concepts the next day and stumble over what I say often neither of which are normal) using notes on my phone to try and compensate but its not helping academically nor are all the doc visits. Within the last few weeks I've been having severe extremity issues too. I find myself banged up from clumsily walking into walls more and more often and am so tired and heavy by the end of a walk around the block sometimes...it gets downright ridiculous. To not see any brain activity makes it even more annoying.
I see my neuro Monday and HAVE to figure out something medically because I can't have the disease running my life for this long nor this early. I know medications are limited but if there is one thing I am optimistic about is that they exist. I am on something for fatigue but need to look into something else probably. Headaches but I think they're caused by too much advil usage so I need to wait till my botox kicks in to know for sure. Most importantly the symptoms involving my motor skills and brain need to be bearable. So much twitching and tingling to the point I need to stop after a block isn't cool at my age nor tolerable. Need to find something to help with that...at least the heavy feeling and spasms. Same for mental fog but not sure what can be done there...something. Better fatigue medication might help.
But if its this bad already I don't see much of a future...one not ruled by MS and a chair anyway. Symptoms need to be managed anyway and they can. Some medications can even halt and reverse damage potentially and only a small percentage of people end up not living a normal life or chairbound because of MS anymore. Those are the only words that heard when diagnosed and I need that to be a reality.
In general I am an optimistic person but this disease progression and fall in my academics has sucked that out of me in record time. I want to help people and show them (especially my family)
that someone with MS can live a normal life, have a family and such even with MS and that they don't need to worry.
After I get my symptoms in check I am going to try and make it to my local MS support group again. I'm byfar the youngest one there despite living in a city but hopefully I can get some of my sanity back. If not, I'll try contacting the MS center and talking with someone because anything can't hurt at this point. But at this rate I'm considering dropping college and just moving and working in a job that hopefully I don't totally hate just so I can live the few years of my life I might have left. They'll be annoying anyway so should probably do it before it becomes unbearable.
I know I'm being lengthy and coming off as really negative (terrible intro...not like me at all and people point it out to me consistently which is why I know I need help). Have never been depressed or suicidal (won't ever be) but at this point I'd rather feel nothing at all.
I'm grateful I can communicate what's wrong unlike my mom but if I got to even half her condition...I couldn't stand that happening. Ever. I've read good things online, people even stopping MS in its tracks for a good 20 years and such. I'm going to see what I can do on my own. Start strength training again, develop a good diet, take some supplements, eventually get a dog of my own...if that doesn't fix these issues then I don't think anything will. Open to anything...even sharing experiences can't hurt.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I know sometimes it's easier to just give up, but doing that just lets the MS win!
I realize sometimes it's just easier not to care but with all the meds now available you can feel hope. I've been living with this unwelcomed visitor for 20+ years. I've tried many meds & Tysabri has kept me in check for years. The nurses had a really hard time finding a vein (Tysabri is an infusion), so I had a port installed. That makes me sound like aa machine
LOL!! I am so glad I did that(saves a lot of pain) I understand the fatigue really makes you want to do nothing, but the more you try to move around the better you will feel. I'm sure you're tired of hearing that, but exercise really helps. I am not in a chair, but I do need a walker(my balance iis all messed up). Diet helps & vitamins. Keep your head up!
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