MY MS DIAGNOSIS (Pt 2) l MY MS STORY l Multiple Sclerosis
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- Опубліковано 9 чер 2024
- Quick part 2 follow up to my first video. Mainly just touching on a few areas I either forgot, or did not describe well enough. Again, I am not a physician. I am only sharing my own personal experience with the diagnosis process, and having this disease.
When I was a new RN a long time ago, one of my first patients was a gentleman with MS. He was such a dear. I learned a lot about the disease and made MS a special project of mine. I became involved in different charities etc. I learned through the years that it seems God gives people with MS an extra dose of courage, personality, charm, grace and like-a-bility. You did a great job with your vids. Blessings to you and yours
Lela, what a wonderful human you are! Thank you for sharing this and bringing positivity to this channel.
I’ve been diagnosed with fibromyalgia, which has a lot of weird similar symptoms, for close to 20-25 yrs. Now after MRI I’m going to neurologist. It won’t surprise me. But my husband used to find it off putting that I wake up and then have to lay down or have days of needing especially since he is still working to lay down . We are both 64. And sometimes the mere thought of taking a shower sometimes is just overwhelming! I am on disability for my fibromyalgia.I commend your family for helping you
Thanks for the helpful insights. I don't have MS. A friend does, and I am trying to understand what she's going through. So I turn to videos like yours. You're doing a great job discussing your experience as one guide to coping with MS. Your thoughts are really interesting and useful. Will watch all your other videos. Hope you can make some more.
Thanks for your videos. Gives me insight of what my husband is going through.he does not talk much about what’s going on with him he has MS
Thank you for watching.
Thank you for talking about bladder problems I have thought it was because of child bearing. But I am putting the peaces together to talk to my Dr.
Yep! We have to talk about what no one want to talk about, right!? Hope you are well.
All my love goes to you! You are stronger than you believe .How you feel now , hows your health Cassie ? I ve been diagnosed 1 year ago with Ms too and i m scared , for how i m supose to grow older with this dissease . Be safe there and wish you good days to come in front of you !
Thanks for all the info! I am going thru testing for MS right now, I think the unknown is the worse. Have a lot of the same symptoms and good and bad days. Thanks for your positive attitude
Tatiana Robinson I am sorry to hear you are going through this, but the quicker you get answers the better. I appreciate your kind comment; thank you!
I just got the official word today---Primary Progressive MS! (multiple O-bands in the CSF). This's gonna sound nuts, but I've had this strange self knowing that I had MS, so getting the official word was actually good news. I really was not looking forward to starting over again at the drawing board!
Wasatch Range Railway i said the same thing! It was like I already knew! I am sorry to hear it is PPMS. How are you doing?
@@cassieski8005 Hi Cassie. I'm doing fairly well. I'm not 100% but I stay positive and active. I'm building a very big model railroad downstairs---it is very big for a model railroad---over 2000 feet of track on three levels. It will keep me busy for years to come. MS will never beat me! I guess that is the United States Marine inside of me. Believe it or not, being autistic is actually benefiting me because I think laterally rather than forward, so I know how to improvise! I'm very solution oriented! MS will have to wake up early in the morning to get me! I'll beat it one way or another! I hope that you are doing well! I can't imagine trying to raise a family with this---THAT WOULD BE A NIGHTMARE! You can beat this! Hang in there!
Now having heart problems from multiple sclerosis blood pressure issues..high pulse rates when walking
My a vit d is very low as well. I am now going through lumbar puncture this Wed. My question is did they put you on a Vit D supplement before you had your Lumbar Puncture? I also have ADD and become more difficult with these symptoms of MS. I want to thank you for giving me a clear understanding of what you went through and this answered a lot of questions. Thanks Cheryl
Hi the first thing I tell people is to join the MS society and go to their meetings. You will meet so many people who no what you are feeling better the your wife,husband and family.
We have a local meeting here once a month. I have not attended one yet, but plan to start doing so very soon. Thanks for the tip Howard.
Hi . Had meeting Tuesday. Had a great time took wife and she has never laughed so much. Love all the people. Now she wants to go again. Think it's good for partners to see MS at all stages and it shows we all can have a fun time if you have friends. We are trying to get people out of their homes as MS makes people afraid to meet new people. I am getting involved in lots of activities. Hope you are well. Been thinking about doing a blog but not sure.
That is great advice to bring your spouse! This diagnosis effects the whole family.
God bless us all w/this unpredi ctable disease❤🎉
Hi, my name is Billiejo. I also have quite a few lesions on my brain, and spinal column. I just had my 3rd MRI done so, they can see if I've gotten anymore lesions. I'm 39 years old but, started being diagnosed with medical problems since, about 5 yrs old. I'm supposed to go back in 6 to 8 weeks, to get the results. I'm going to go crazy if I have to wait that long. Im actually going to call tomorrow to find out. Lol! My 2 sisters and I have a whole slew of medical issues, and more are starting to rear its ugly face. I won't list them all because, it would take too long. Lol! I'm really glad, that we now have ways to communicate with others with the same problems. I'm sorry your going through all of this. Your a really strong woman, and to have to go through this with younger children. I'm not going to write a book but, if you don't mind, I'd like to stay in touch, though your page. Have an amazing night dear.
How are you doing Billiejo? I am sorry for the delayed reply.
Its Lori again here is what again I'm going through, my brain is all over the place, I can't get anything done because I'm all over the place can you talk to me please, yes everything you are. Saying, feel like I'm going crazy your so informative and a dear!
Jeremy Sanborn Hi Lori, thank you so much for your kind words, and I am very glad my videos are helping you. Being vulnerable and open can be hard, but so rewarding as well. As I said in my last comment, keep a journal! Include your cognitive issues, bladder etc. Find a dr who will listen to you. Push for a full work up. In the meantime take good care of your body. (Nutrition, Vit D, rest, activity etc).
God bless you sweetie
oh bang ! here it is! YES. It's UNREAL. and the cognitive...so bummed, I had to drop out of law school, and I was an ACE ! LOL
Skylark I am so sorry you suffer with this side effect as well. I have had a HUGE benefit to my cognitive issues by treating my fatigue. It saddens me you had to drop out of law school. Once I started treating my fatigue, I was able to get my sleep cycle in a more regular pattern-improving my sleep hygiene. It has made ALL the difference. Please chat with your care team about options, and maybe you can reenroll in school! I mean it would be a waste for an Ace to drop out! 😉
@@cassieski8005 would you please share what you take for fatigue?
I have most of those symtoms went to neurologist for not thinking right forgetting inn a middle of a sentance.. After my MRI he said I only had vain changes... So I'm seeing my primary tomorrow
God Is our One Great Creator. I praise Him and thank Him.
I have not been confirmed but doctors think it is so am I my one eye is getting blurry and eating some times swallowing and waking and fatigue and so on love to chat with you
Just found you. Great channel. We need an update. How are you doing girl?
Really appreciate it! I am doing really well! I know I need to make another video. I am sorry I haven’t. My goal is sometime this year 🤣.
Ugh. I get the back numbness too. It sucks.
Totally sucks! Mine did stop a few months after starting my DMT. So that was a relief.
How are yoy doing now? Godbless you on your ms journey
Hi there! Doing well-moved since these videos and switched treatments. I need to post an update-thanks for hanging around with me☺️
@@cassieski8005 God bless you 🙏🏽❤
Ive heard stem cells will help. Also gene therapy is right around the corner