Hi. I am new to this. I was just diagnosed with multiple sclerosis at the end of August and o have already been back in the hospital in less than a month with another flare up, it’s scary knowing tha my body is changing and I cant control it.
I am very sorry to hear that sweetheart. I have had it my whole life I just didn’t get diagnosed until 2006. I am 43 yrs old and I can remember waking up and not being able to walk as a child. As an adult I wake up and can’t see. It will change a lot of things in your life. But many things will remain the same. If you have any questions call me 1-509-599-9824. I have been through a few tiers of treatments. My best advice is to get a good Neurologist someone that is good and you like. Because that’s who is going to be giving you choices about your health and treatment for it. I am blessed in that area I basically love mine. She is also one of the top ones in my city. Also reach out to the M.S society and go to support meetings. I never did that and I feel like I really lost out. Because hearing others going through the same crap that you are, and what they did about it can really only help you out. I watched my Mama die of it so I felt like I was no stranger to the subject. But infact their is always more to learn and teach as well. Vitamin D is a big help take supplements for that immediately. If you are not already. Education is key read as much as you can on it. And find out what works for you. I am so sorry to hear about your diagnosis. But welcome to the club It’s nice to meet you. My name is Norman.
Thank you, it was very scary for me I woke up one morning in july and couldnt see out of my left eye and that’s what started me trying to figure out what was going on. I have started the vitamin D, and the neurologist I have is a good dr and answers alot of my questions. I am very thankful that I have an amazing support system my fiance has been with me every step of the way and he is been my biggest help, he has been the biggest reason I didnt freak out so bad. They have me doing tysabri infusions I go for my second one this Friday. I think the scariest part for me is knot knowing when I’m gonna have another flare up because the drop foot is a pain in the butt and the fluid on my brain is scary.
Do you have any suggestions for medication because they have me on gabapentin to control the headaches, and I dont want to be stuck on a whole bunch of pills for the rest of my life.
I have been on Gabapentin for over 13 years now I take a lot of medication. But I am always in a lot of pain everyday. Cymbalta is another good one for depression and pain. I used to get real bad headaches then I was prescribed “Indomethacin” and it didn’t take long and it knocked the headaches right out. “Adderall” is a good on for fatigue. I take vitamins as well like vitamins b 12
Ok thank you
You are very welcome and if I can possibly help you with anything else. Feel free to ask ok.
Ok I will thank you for answering all my questions
That medication you mentioned for headaches I’ve never heard of. I’ve had terrible headaches since I was 12 years old, diagnosed at 27. Is it a pill you take?
Yes it was one given to me this last episode I had that put me.in the hospital again. I was told it’s a drug used for a few conditions but that it can help with the headaches and it does but its not something I want to be stuck on because the headaches were part of how I new I was having another flare up so I have gone down from taking it 3 times a day to twice a day but I’m hoping now that I am. Almost done with this round of steroids that I can stop taking it so I am gonna go down to once a day and see how that goes
Sounds like something they prescribed me when I caught shingles from my father who got the live vaccine and then visited me. I have an appt tomorrow I’ll discuss it wroth my doctor. Thank you!
Ur welcome, I go for my next tysabri infusion on the first. They pushed that out to every 6 weeks instead of every 4 because when the did lab work when I was in the hospital I came back positive with Jcv so my neurologist pushed it out to every 6 weeks
How long have you been in tysabri? I’m only on my 5th infusion, had it Friday. They’re thinking my RRMS may be changing, pretty scary.
I just started this will be my second infusion. And yes I agree it’s all scary
Well my first few infusions I had more energy than I’d had in years it was great. Now I get fatigue flu like symptoms which doctors tell me is rare. I wish you better luck. Exercise helps a lot even when I don’t quite feel up to it, it helps.
After my first infusion it kinda drained me I’m hoping it won’t be the same way this time. And with have Pt and Ot 4 times a week I get plenty of exercise but I have had a few days were I dont really want to do it but it does help take my mind off stuff
Finding a stress reliever is hard but important. I was a runner before Ms. That was my release, still searching for a new one that works as well.
Yeah I’m still trying to figure that out I loved working but I was told until they get it under control better I cant work so it’s time to find a new stress relief
I tried meditation and found I’m easily bored and couldn’t get out of my own head lol. Yoga stretching and walking is OK but not a great stress reliever for me. I absolutely loved working so it geld like my identity had changed and I feel lost. I’m not sure how to get out of that overwhelming feeling. I’ve found stress makes MS symptoms so much worse. I’ll let you know if my doc at my appt tomorrow tells me anything life changing. Fingers crossed 🤞.
Yes I agree I have tried meditation and agree I cant get out of my head either. And I have been told the same about stress so I am doing my best but life is full of stressful situations. I do miss working alot I am a very big people person so I loved working with the public so not being able to work has been hard and life changing. Fingers crossed you get some good news