Your description of symptoms is excellent. I have lots of problems with hands / forearms, like you. I have exactly the same situation, right down to the stiff hands, which i never hear anyone mention. Im sure my PCP will blame it on arthritis, but i know better. I see someone made fun of the MS specialist lable, well, i strongly suggest MS ppl get with one, cuz im tired of regular docs demonstrating their arrogant ignorance on this.
I have MS as well, and your description of what MS feels like was fantastic. I was diagnosed 7 years ago at 33 at the top of my career then all of a sudden it came crashing down. But I've improved over 60% because I'm on Tysabri. Ask your Doc about it. I was in a wheelchair and now I'm not. It's a monthly infusion, and I only get MS symptoms right around a day or 2 before my infusion.
Hello! Tough story. Thanks for sharing. You're right that MS is mostly very manageable. You seem to have a good attitude! Even the numbness you think is permanent may still go away. And spinal lesions CAN heal - I'm living proof! I had some huge ones and was in a wheelchair, now thanks to diet and stress management better than I've ever been and the lesions have dissapeared.
hi, thank you for the reply. bless. i believe im experiencing my very first ms attack. this is not fun. i had muscle twitches for like 5-6 months. did tests,its nothing. then my left hand went numb, and arm pain. that got brushed off. then my left leg lost all its feeling, i was pretty traumatized, they still couldnt figure it out. and now, in the past month, absolutely everything, headaches, electro-shocks, fainting, memory loss, fatigue, weakness in legs, sight, breathing, why god....why :(
@TheVillain365: No, unfortunately, everybody is different and each case is unique. It could last for a few days, a few weeks, or in some cases, can be permanent.
LoL....I love "ms specialists"."ms experts". .And how exactly does she know that the nerve damage in your spine is permanent? Oh wait..she doesn't. If the symptoms go away then the nerve damage cannot be permanent. A little something known as remyelination..".Permanent" nerve damage usually does not set in until disease has been active for a long time. i.e spms..By the way an "ms expert" is somewhat of an oxymoron...
I know what you mean, but I don't recall if she actually told me that the damage to my spine was permanant, I assumed that it was common knowledge, hence all the controversy over stem cell research.
@librarising79 How quickly do the symptoms come on usually? How long to they last normally? Do they progress over a period of a few weeks? Or do they just come on over the course of a few days and then last however long they're going to?
@guitarobsessed85 I would have to go with the latter; they came on over the course of a few days. That was the only major exacerbation that I've had so far, where I experienced an MS hug. It started down in my legs and gradually worked it's way up to my chest. I don't remember how many days/weeks it lasted. It would be different for everybody.
I am having my 1st exacerbation after almost 4 yrs w/ MS. You described the MS hug perfectly. I have had it for almost a month now as well as the leg weakness/heaviness. The steroid treatment hasn't done anything. I have been panicking that this may all be permanent. Thanks for your video & saying not to panick, no one else really knows how this feels. Your video gave me some hope!
Sorry I took so long to get to this comment. I'm so sorry to hear that you are going through such a long relapse. I hope your symptoms are starting to let up some. I'm not even sure if I will bother with steroids if I have another episode, sounds like they do more damage than good in the long run anyway. Personally, I couldn't tell that they did any good.
Doing fine now. I've had some new symptoms over the last several months that seemed to be confined to my left arm, that is the area I have the most trouble with. But no major relapses since March, I'm happy about that. Thank you for commenting/subscribing.
Pleasure to hear it put so well. In the 1980's when mine began they didn't tell anything. I saw it years later on their notes from the first doctor's visit. This was far worse than any symptom, because I was not allowed to be so sick.
Hi there, I have just been experiencing the 'MS hug' in a recent relapse and I did say to my Neuro that it felt like I had a baby in there - trying to describe the rolling cramps (and I have had two babies so I can say that!). The pain is different than a contraction - that is more isolated around your uterus. I had the squeezing around my abodomen and ribs. Yuk. Glad you are doing better now :-) Kerri
Try Reading the experiences people with ms have that can help in your situation. While treating it, take the opportunity to do things that you probably wouldn't do normally or miss. I'm saying take advantage of your well being now, Run, Bike, be physical, exercise. Better to do it before you can't. It's a good time to reinvigorate your life and Enjoy it! :P Stop being a internet addict!
Your description of symptoms is excellent. I have lots of problems with hands / forearms, like you. I have exactly the same situation, right down to the stiff hands, which i never hear anyone mention. Im sure my PCP will blame it on arthritis, but i know better. I see someone made fun of the MS specialist lable, well, i strongly suggest MS ppl get with one, cuz im tired of regular docs demonstrating their arrogant ignorance on this.
sleekcartim 3 weeks ago
Comment removed
ThereminWeirdo 1 month ago
librarising, I've given birth and also have the MS Hug and yes there is a similarity with contractions.
lndmkmy 4 months ago
I have MS as well, and your description of what MS feels like was fantastic. I was diagnosed 7 years ago at 33 at the top of my career then all of a sudden it came crashing down. But I've improved over 60% because I'm on Tysabri. Ask your Doc about it. I was in a wheelchair and now I'm not. It's a monthly infusion, and I only get MS symptoms right around a day or 2 before my infusion.
kylewitherspoon 6 months ago
Hello! Tough story. Thanks for sharing. You're right that MS is mostly very manageable. You seem to have a good attitude! Even the numbness you think is permanent may still go away. And spinal lesions CAN heal - I'm living proof! I had some huge ones and was in a wheelchair, now thanks to diet and stress management better than I've ever been and the lesions have dissapeared.
missalgernon 7 months ago
Thank you so much for sharing your story
scotiagurl19 9 months ago
hi, thank you for the reply. bless. i believe im experiencing my very first ms attack. this is not fun. i had muscle twitches for like 5-6 months. did tests,its nothing. then my left hand went numb, and arm pain. that got brushed off. then my left leg lost all its feeling, i was pretty traumatized, they still couldnt figure it out. and now, in the past month, absolutely everything, headaches, electro-shocks, fainting, memory loss, fatigue, weakness in legs, sight, breathing, why god....why :(
TheVillain365 10 months ago
can anyone tell me how long the leg weakness lasts for?
TheVillain365 10 months ago
@TheVillain365: No, unfortunately, everybody is different and each case is unique. It could last for a few days, a few weeks, or in some cases, can be permanent.
librarising79 10 months ago
i'm sorry...its horrible and remember your the expert not the neurologist,
monarch8080 1 year ago
You have a great attitude and that's worth so much. I hope you're able to enjoy good days when you have them.
gphx 2 years ago
I really like your attitude and your description. You bring a very human and modest interpretation to MS.
telemetry9 2 years ago
LoL....I love "ms specialists"."ms experts". .And how exactly does she know that the nerve damage in your spine is permanent? Oh wait..she doesn't. If the symptoms go away then the nerve damage cannot be permanent. A little something known as remyelination..".Permanent" nerve damage usually does not set in until disease has been active for a long time. i.e spms..By the way an "ms expert" is somewhat of an oxymoron...
Oozingmachismo24 2 years ago
I know what you mean, but I don't recall if she actually told me that the damage to my spine was permanant, I assumed that it was common knowledge, hence all the controversy over stem cell research.
librarising79 2 years ago
@librarising79 How quickly do the symptoms come on usually? How long to they last normally? Do they progress over a period of a few weeks? Or do they just come on over the course of a few days and then last however long they're going to?
guitarobsessed85 1 year ago
@guitarobsessed85 I would have to go with the latter; they came on over the course of a few days. That was the only major exacerbation that I've had so far, where I experienced an MS hug. It started down in my legs and gradually worked it's way up to my chest. I don't remember how many days/weeks it lasted. It would be different for everybody.
librarising79 1 year ago
I am having my 1st exacerbation after almost 4 yrs w/ MS. You described the MS hug perfectly. I have had it for almost a month now as well as the leg weakness/heaviness. The steroid treatment hasn't done anything. I have been panicking that this may all be permanent. Thanks for your video & saying not to panick, no one else really knows how this feels. Your video gave me some hope!
sljblades 2 years ago
Sorry I took so long to get to this comment. I'm so sorry to hear that you are going through such a long relapse. I hope your symptoms are starting to let up some. I'm not even sure if I will bother with steroids if I have another episode, sounds like they do more damage than good in the long run anyway. Personally, I couldn't tell that they did any good.
librarising79 2 years ago
You explanied it all very well. All my relpases have been due to spinal cord lesions and that is scary.
I know I have you on my other channel but not sure if you knew I started this new support group?
Would love to have you particapte.
FYI, I just ddi 5 days for the steroid infusion but was able to do it at home. there are easier for me than the oral roids.
I am having the hug big time from this flare, not fun at all.
Hope you are doing well now!
Andrea
MSVlogSupport 2 years ago
Doing fine now. I've had some new symptoms over the last several months that seemed to be confined to my left arm, that is the area I have the most trouble with. But no major relapses since March, I'm happy about that. Thank you for commenting/subscribing.
librarising79 2 years ago
Excellent, description and conclusions.
Alexknobsob 2 years ago
I'm glad to watched to begin with, and even happier that you felt you got something out of it. Happy Holidays.
librarising79 2 years ago
Pleasure to hear it put so well. In the 1980's when mine began they didn't tell anything. I saw it years later on their notes from the first doctor's visit. This was far worse than any symptom, because I was not allowed to be so sick.
Alexknobsob 2 years ago
great little video, thanks 5*'s
WORRO01 2 years ago
Do you have a support system at home? I hope so. You'll need it because you are going through some tough and strange times.
I think you are doing a phenomenal job at dealing with this!
Rh1no1 2 years ago
I have an "online support system".
librarising79 2 years ago
Thank's.
flomartoo 2 years ago
Thanks for the update, chica. Been wondering how you're getting on. You really inspire me, please keep making videos :-). Blessings x x
heidelbergerin 2 years ago 2
Namaste!
librarising79 2 years ago
Thanks for your articulate courage.
I hope you don't mind my adding:
SUPPORT STEM CELL RESEARCH FUNDING NOW!
2bsirius 2 years ago 2
Hi there, I have just been experiencing the 'MS hug' in a recent relapse and I did say to my Neuro that it felt like I had a baby in there - trying to describe the rolling cramps (and I have had two babies so I can say that!). The pain is different than a contraction - that is more isolated around your uterus. I had the squeezing around my abodomen and ribs. Yuk. Glad you are doing better now :-) Kerri
kezzcass 2 years ago
It is certainly a strange experience. Thanks for subscribing.
librarising79 2 years ago
An MS hug, I'll remember that.
conibonjovi 2 years ago 2
Try Reading the experiences people with ms have that can help in your situation. While treating it, take the opportunity to do things that you probably wouldn't do normally or miss. I'm saying take advantage of your well being now, Run, Bike, be physical, exercise. Better to do it before you can't. It's a good time to reinvigorate your life and Enjoy it! :P Stop being a internet addict!
Deceptivemedia 2 years ago 2
Oh believe me, I have been taking advantage of my well-being. I'm more concerned about over-doing it!
librarising79 2 years ago
Thanks for the update, Libra. We care about you and are concerned about the situation.
DieselBodine 2 years ago
Much love to you. xxx
SensualWhirl 2 years ago