When being diagnosed feels wrong
Hey everyone! I'm new to the forum, I'm 20 and I was diagnosed one year ago. As you can see from the title, my diagnosis feels wrong. Unfortunately I'll have to share a bit my clinical history (quite boring I know) but it's quick: I basically had optic neuritis almost a year ago (could not see from right eye), I had feels lesions on my brain (asymptomatic) and spinal tap tested positive so I have ms. Its incredible to me still, after almost a year I have not had a single symptom or new lesions. That's why I'm saying it feels surreal. I'm on treatment (tecfidera) and I'm just worried I'm gonna have to be on treatment forever when there's no risk at all. I guess I'm underestimating ms?! I don't feel sick at all. Not even fatigue (I get tired more easily but it could be so many things) so now there's this thought in my head, like I'm experiencing so much grief from such a harsh diagnosis actually, what if I have nothing actually? I don't know, I'm not complaining about feeling healthy (I wish only health to myself and all of you) it's weird I'm forever considered sick yet feeling healthy. Does anyone understand? I don't want to offend anyone going through an hard time, thanks for understanding😀
Sorry everyone I meant *few lesions
Hey there! Thanks for answering me. Well Im very happy that you found your own balance, I really hope you remain stable and healthy as possible. At the moment I understand you, I am 20 and go to college and work part time so my life is pretty stressful as well. I am privileged that I dont have to think ms now and so I act too as if don't have it. Its important to rest when we are tired but I feel stress is a part of life and inevitable isnt it? Thank you so much for answering me and for your advice, any advice is precious really
I call the band parts floating around in spinal fluid part of myelin sheath. Definite MS .
I was diagnosed with primary progressive MS from the beginning, so can not comment on getting to a new normal. Each day is a new normal for me. Been on copaxone , but neurologist thinks I need infusion drug now. Have to wait for pandemic to quiet down. I know my days are numbered, as they keep adding on a disease after the next. Degenerative disk disease, to a rare H63d genes that caused hereditary Hemochromatosis. everchangingms Google me at.
I am ten + years into this new journey, spend lots of time researching to let my Dr team know of new things. You need a team to work together. Have two neurologist, gp,gi, endocrinologist, as bit D was way low, cancer Dr for gene, gene specialist, who I know more about my disease than her... But stay on top. Know your body. Is the pain from MS? Is it from something else, thus why specialist. And new ones, if you do not like ones you have.
Joey
Have you had multiple opinions on your MS? My neurologist had me go to another neurologist just to verify his findings. There are neurologists in some cities that specialize in MS more than anything else. That's why my doctor sent me to UF Health to verify his diagnosis. There are so many things that go on that could be or couldn't be MS that my doctor wanted to be absolutely sure before he gave me the diagnosis definitively.
I take Krill, B12 5000mg, Vitamin D and Turmeric. The vitamin D is a prescription that is a higher dose.
Yes I saw two ms specialists and the last one I saw is one of the best in my country. It couldn't be more sure. But on the positive note he said my brain MRI looks great for someone with ms so thats something ahaha. He thinks I'm gonna have the next relapse in 10 years or so, but he still wants to see me every six months to check if Im progressing. Why can't I just go in 10 years then ahah? Joking. Btw thanks a lot for answering, it means I lot I got so many kind replies from this😀 I was really afraid I was gonna offend someone
I guess it’s a role of the dice. I was diagnosed before there were any drugs. So when something became available I was ecstatic. Sign me up. I was married with two little kids, ain’t nobody got time for ms. I felt I had an obligation to do everything I could to prolong whatever ms had planned for me in order to be there now. So I’ve been on pretty much most of them. And here it is 25 years later. I have my issues, mostly balance and gait related and use a walker for short distances a wheelchair for long ones. My ego has taken as big a hit as my brain. I don’t look like I thought i would, but things like that are small sacrifices. But as time goes on you’ll figure out a short term/long goal plan. I plan on leaving my brain to science, and I think I might leave liver as well. Someone should look at it considering how it’s been tasked with eliminating all of the poison I put through it. At this point I’m just grateful to live to fight another day.
Thank you for sharing your view and thoughts on this! I sometimes forget how lucky I am having access to comfortable medication while still at a "early" stage
What you are experiencing is common in MS. I had my first dysfunction at 17. The next dysfunction that I took note of was at 33. If I had been taking MS meds (not developed then) or changing my diet (not thought of for MS at the time), I am sure I would have attributed the span of relapse to either of these. In 1983, the time of my second MS event, MRI was just beginning to be accepted or appreciated in diagnosing MS. Not focusing on the core of my issues was not all bad. My third dysfunction came at 38, and it was hard to ignore as I lost my eyesight. In my case, it was not optic neuritis, but in the category of double vision. When I turned my head, I went into kaleidoscope vision, totally blinding me. Within days, I started seeing multiple levels of vision in each eye. I also discovered an allergy to steroids, itching from head to toe. Eventually, I lost all eyesight as if looking into a grey cloud. This complication made getting my eyesight back a year long exacerbation. I do not take MS meds and never have. Instead of panicking, focus on what you can do, not on what you can't do. Pay attention to things that trigger your relapses and respect those limits. For me, it was heat and stress (family and financial stress). I managed to work 20 additional years in my career field (after the second dysfunction) full-time. Managing around MS is certainly possible. It is not a death sentence. It is life-altering, but can be minimized by avoiding the triggers that bring on relapses.
Thanks so much for your views. I really hope your vision got better eventually that sounds harsh. Steroids sucks already I can't imagine being allergic to them altogether! Well vision issues are terrible to experience I reckon (my vision was also gray with flashes although not for a whole year 🙁 ) but at least it made doctors immediatly connect it to ms so I could have immediatly a diagnosis without experiencing weird stuff for years like it happens many times! Thanks for your advice, its really precious coming from people who have had ms for years and knows what kind of monster it is🙏
Vision, yes double and cloudy. Steroids no help, even the year with oral steroids, injections for 5 days on IV, and 80 mg methaprednisone unto neck so allergic. ACHTAR is something I had once. $30,090 ten years ago, so insurances equal about it, but option.
