Patients Multiple sclerosis
Posted on 6/25/20 5:55 AM
@Tina010720 I know the world is a mess these days, but it’s important to start medication sooner rather than later. Best of luck ton you, dear!
Posted on 7/13/20 6:45 PM
How are you doing? I thought I would comment on this discussion as we have a few new members to our community who may not have seen it yet!
So, let's get to know one another! What is your MS story? How and when were you diagnosed? Which type of MS do you have? How are you doing today? What medications or treatments have you tried? Do you have any advice to share with someone newly diagnosed with MS?
@NaNa2016 @tigger_georgia @Natsully @cjcg50 @Merccy @Cbmart7567 @Mdistef608 @angelarenee2003 @Dcorbitt @neely416 @wood97101 @Ldiet45 @Linetbrad @rfeatherer @katypugz @Larrychris @Hulettgina
Feel free to introduce yourself and share your story here!
Posted on 7/14/20 10:02 PM
My name is Natalie Sullivan. I am a 58 year old white female that was diagnosed with RRMS in May 2017. I had been going to a doctor that would not give me the time of day when I continuously told her that something was wrong. My ENT doctor diagnosed my MS. I told him that I could not see well, my head was killing me and I thought I had vertigo. His office conducted numerous tests and I was sent for x-rays and a MRI. Upon returning to my doctor, he sobbed as he told me that I had MS. I asked, Are you sure? His reply was your brain is covered with scar tissue, you have a very large, bad lesion on your brain stem. I did not know at that point what questions I should ask.
Immediately, I called a friend and her husband agreed to be my general practitioner. I went to him and he assessed my situation and did bloodwork. They went on vacation the following day. While seeing my general practitioner, he immediately had his office call to get me an appointment with a world renowned MS Specialist in Cullman, Alabama. This appointment was far out so I was instructed to see a local neurologist prior to seeing the MS Specialist. The local neurologist sent me to PT, ordered more tests, prescribed Acthar Gel for me to take since home health failed to make sure my steroids were administered correctly. My vein blew with the IV steroids, I called the nurse and she told me not to worry about it! I later visited the neurologist office for an appointment and further tests. At this point, I still had not received the Acthar Gel. This neurologist handed me three pamphlets and instructed me to choose which medication that I wanted to take.
While my GP doctor was on vacation, he called back to get the results of my bloodwork. He called the pharmacy and then called me due to my vitamin D level being 11. I saw him again prior to going to the MS Specialist. My condition continued to worsen because I was in a major flare that was not being treated. The afternoon before I went to see my MS Specialist, I received the Acthar Gel (5 weeks after it was ordered).
The MS Specialist took a lot of time with me. He talked to me, asking what all was going on. He assessed all of my symptoms and prescribed medication for me to take along with the Acthar Gel. Other than taking medications, I only slept. No amount of rest resolved my fatigue issue. I was also told not to go back to PT at this point because I was breaking my body down!
Approximately three months later, I again visited the MS Specialist after having a follow-up MRI with contrast at a designated clinic. MRI results were immediately available to my doctor. Comparisons of my MRIs were done showing very little change. My Specialist told me that it was time for him to be aggressive. He ordered Ampyra (walking pills), Lidocaine patches for my pain, and Baclofen for muscle spasms. My next appointment with the Specialist was made for six months away. Appointments with my GP were made three months apart. So many things could happen within a very short time period.
For some unknown reason, each time I got too hot, I blacked out while taking the Baclofen. This is a story for another day. Currently, I have an Ocrevus infusion every six months. Other medications I take currently are: Meloxicam 7.5 mg bid, duloxetine 60mg qd, Omeprazole 30mg bid, Dalfampridine ER 10 mg bid, Adderall 30mg bid, vyvanse 40mg qd, ultracet two tabs tid prn, 1/2 tab blood pressure tab qd and flexeril every night. Along with these po meds, I use Lidocaine 5% patches and Voltran gel as needed for pain. I feel like a walking pharmacy.
Posted on 7/15/20 7:35 PM
Hi everyone, I've been on this site for a while now but it's so great to see so many new names here! I was diagnosed what feels like forever ago (going on 10 years I think?) and it was really hard for me. I was a pretty active guy before, but when I started having blurred vision and balance issues I had to give up a lot of that. It was really hard for me, accepting the diagnosis and then coming to terms with what it would mean for me. I still have bad days where I'm depressed about the things I can't do anymore and the what-ifs about where I would be in my life plan if I hadn't gotten this. I ended up having to retire early because of it. I deal a lot with fatigue and spasticity but I'm still seeing my PT for stretching and working on balance and gait. Some days are hard, but I do my best to keep chugging forward and stay positive!
@Natsully Wow, I bet that first doctor felt terrible about not believing you when those results came back in! It's a good thing your ENT listened to you. I wonder what the stats are on misdiagnosis or late diagnosis caused by doctors not believing their patients? I hope to goodness it's not high...
Posted on 7/15/20 7:36 PM
I feel the same way with all the pills I'm on 8 different meds and going for iv treatments every 6 months and sitting there with the iv in my arm for 4.5 to 5 hours. It's not fun. But as my drs and pt people if you don't use your legs or other body you lose them. So i try and stay active every day even with my Walker or wheelchair
Posted on 7/19/20 2:09 PM
@Marques hi. Any time you wanna chat I'd love too. I'm Allways home due to the ms and multiple other health conditions I don't work so feel free to contact.
Posted on 7/19/20 5:46 PM
Posted on 12/10/20 4:07 PM
Good morning everyone hope you're having a great day I'm 56 years old I was diagnosed when I was 53 I have to say I had great doctors that figured this out within a few months my doctor listened to me and took everything to heart and send me immediately for an MRI and a spinal tap my first MRI I had 10 lesions on my brain and 16 down my spine I have bad days and good days I was diagnosed with primary progressive MS so I'll be on infusions the rest of my life it's very hard after my infusion I get very tired I feel like I sleep for a week but after that I have just learned to do things at a very slow pace when I get tired I rest and then I'll continue what I had started.
In this 3-year. After I was diagnosed I lost my mother then after my first infusion I got fired from my job I then lost my home and moved in with my father he died 11 months after my mom I was very blessed that my father left me his home because he didn't want me to suffer any more than I was I did lose my two sisters due to this I lost my two brothers 10 years ago 6 months apart so my sisters were the only family I had left and they deserted me because my father gave me the home so now I have no sisters or brothers in my life or my parents so I'm pretty much on my own I have a wonderful son his wife and his two boys that support me and give me strength to move on it's tough because sometimes you feel like you're complaining and don't understands the daily struggles I go through even though I lost a lot of people in my life I do have some very strong people that have stood by me and would do anything for me. My best advice is try to find people that bring happiness into your life and not stress. God bless all of you stay strong
Posted on 12/19/20 10:20 PM
That is terrible what happened 2 u. May u get by and be safe
Posted on 1/20/21 2:43 AM
I was diagnosed with MS in 1984 although I feel I had it year’s earlier. In my early years I would have 2 to 6 exacerbation’s per year. In the upcoming years I was on Avonex and Betaseron and Methyl Prednisone 1000mg iv. for acute exacerbations. After each attack I would recover but not all the way. I used a cane probably longer than I should. I first used a manual wheelchair in 1991 and went to a power wheelchair in 2000. My last exacerbation was in 2002. Since then I have been attack free. My neurologist took me off of all MS medications after I had major side effects.
I am 71 years old and have seen and done a lot in my lifetime, I was shot twice while in Vietnam, I was a project engineer building bottled water plants for McKesson. I was also a Journeyman Electrician with IBEW local 617 for 12 years.
I live with my wife of 22 years in Palo Alto CA. I met my wife while on a MS bike ride in Sonoma CA.