@cgarci89

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cgarci89

Test treatments

Hello everyone! I'm interested in chatting with other msers who have been, or are currently involved in clinical study trials. I've been in study since the beginning of my diagnosis in 2012 and I have been EXTREMELY happy with treatments! Also, I love knowing that I'm helping pave the way for new treatments, while simultaneously treating my rrms. It's definitely a win win situation! Anyways, would love to hear from others who have experienced trial studies, hope to hear from you all soon! !

Stumbler

@Stumbler

@emz46 , getting to see the Neurologist always takes time. They're very much in demand. What you could do is contact your local MS Nurse and have a chat with them. You can locate your MS Nurse here :- https://www.mstrust.org.uk/understanding-ms/who-can-help/map-ms-services

yuma

@yuma

@emz46 - do you have an MS nurse you could speak to? my own was the one to speak me through treatments and different medications etc, my neurologist wasn't really involved until I needed a prescription

Stumbler

@Stumbler

@emz46 , the whole world is busy! You're either busy or you won't be in your job for long! But, you're just as important as the next person, so don't allow yourself to be fobbed off. You have a genuine need. And, I'd see if you can get a different physio. Physio is all about maintaining what you've got, not waving the white flag and giving up. You are important........

cgarci89

@cgarci89

I'm sorry you're feeling shuffled off! I think we've all felt that way from time to time! Unfortunately that feeling seems to be part of this crazy adventure. Whether it's coming from doctors, nurses, family, friends, spouses, all the above! It can be frustrating, but keep being persistent, and I promise that feeling gets better! To give you an idea, I was unable to walk and was hospitalized in August of 2012, sent home with steroids and then didn't even start treatment till October 31st. Which is my understanding that's not a bad time frame, but for me that was way too long to wait for answers and help! But, the good news is, once you get a neurologist and nurse, you won't be alone and pushed off. It's a whole new experience once you have an ms team behind you. Good luck!

potter

@potter

Last year I got involved in a MS genetic research project. They were looking for MS patients that had family members with MS. I had two aunts with MS and nine other relatives that died from ALS so I was a perfect subject. They sent me a kit with 6 blood vials to be filled and then shipped to San Francisco. I don't suppose I'll hear anything about it. They also had another research project here in Wichita, KS on vision. You had to sit with electrodes attached to your skull and watch blue flashes on a screen for a half an hour. I was already having trouble with blue flashes at the time so I turned it down. It turned out my eyes were sensitive to watching television and florescent light bulbs. Potter

cgarci89

@cgarci89

Thank you for being willing to help in the research and connection between ms and genetics! It's such an uncharted area with more questions than answers it seems. We appreciate your helping with these questions that need to have answers. Best of luck to you!

cgarci89

@cgarci89

@emz46 I can read just fine, thank you for your concern. Although the complete blindness in one eye caused from optic neuritis does make it a little difficult at times, but what i can see even more clearly is your anger towards what I had to say. MS sucks, it's hard, it's frustrating, painful, annoying, and so many other emotions. I'm sorry if I rubbed you the wrong way, I simply was trying to be kind to someone who is going through a rough patch. To be clear, this post of mine was wanting to chat with people who are involved in clinical trials, not people who feel they aren't being cared for properly. This was my forum that I started for people to be able to talk about unapproved/pending approval test medications. So, please feel free to leave this conversation if you don't feel it pertains to you and your individual case. Thank you.

cgarci89

@cgarci89

@sandwich Thank you for the welcome :) I've been in clinical study from the beginning of my diagnosis in late 2012. I don't know where the idea originated, but I do remember clearly thinking while at the hospital that if I did in fact have ms, that no matter what I wanted to be involved in some kind of research study. Months later when I met with a neurologist he went over all my medication options and he included the ocrelizumab study that was getting ready to begin in the area I was at. The rest, is basically lots of medical care, blood draws, physicals, mri's, tests, and much, much more that is typical of treatments. I've never felt like that it was a decision to be made, but rather the only option. In my mind, the medical community gets data it needs to help cure this terrible disease and I get to be cared for by some of the best doctors in the world. It really feels like it is a win win situation. Overall, the whole experience has strengthened my belief that everything happens for a reason and I am so blessed to be able to be a part of something so much bigger than myself.

Monica2015

@Monica2015

Hi @cgarci89, well done! That's very commendable. We need more braver souls like you! Monica

cgarci89

@cgarci89

@monica2015, Thank you, I appreciate you saying that! I don't feel brave haha, I just felt that it was the right way to go for my treatment :)