I noticed something about my MS last week.

[HVAC]

I was going full tilt boogie last week.Some days 5-11. I even had my dreaded diaphragm spasm on the metro, which the medicine helped. I was not being told "No" by Lawmakers is anything your asking for going to happen but "When some place freezes over NO!" Politely of course.

Before the trip my symptoms were bad. I kinda forgot about them. They were there but I just did not care. The only difference was my attitude. I am not saying it is mind over matter. I am not even advocating being that busy it would not work. For me and only me I realize it was refreshing to get out of my own head for a week.

Alex

[HVAC]

NMSS is the National Multiple Sclerosis Society and MSAA is Multiple Sclerosis Association of America. They have bookelets and webcasts on all kinds of topics and the MSAA helps with cooling vests for summer.

No question is dumb. We were all new and scared and confused.

Alex

[stormey1963]

Alex, thanks for getting back with me, this may be a dumb question, but what do NMSS and the MSAA stand for. Also, I will do a new post.  And I am a newbie, I was in denial for awhile and didn't want to talk to anyone about it because it makes is so real. I have quite a few other conditions also, 'Thank you again, my best wishes to youm
Sherry

[HVAC]

Sherry,

  It would be best so your questions get answered to start a new post under post question. This was an old post.

  MS is different for each of us. There are two things which happen one is inflammation (which comes and goes) and the other is nerve damage ( these symptoms stay). No Doctor can predict any of it. We with Ms learn to read our own bodies and advocate for ourselves, which is not easy. Then somethings turn out not to be MS at all. I have other conditions besides MS which complicate things.

For me a good family Doctor is my most important team member. I actually seldom see a Neurologist.

If you are new to this the NMSS and the MSAA also have lots of great resources on all kinds of topics.

Alex



Alex

[stormey1963]

Hi Alex, I am Sherry, Today is the first day I have posted on one of these. After reading what others are going through, it gives me hope!  What is an MS Hug, or don't I want to know!  I just found out I have lesions on my optical nerves. I didn't know I had MS, but I went in a coma for 8 days and while I was in there, Shands Hospital nurses dropped me on my on my head or something (oh yeah, i live in Florida!) Anyway,I had this huge scab on the back of my head and every time I asked about it, it was like it was on my file, "If she asks about her head say"don't worry about it"  Any way, even though they wouldn't admit to injuring me, they gave me a free neurologist (I think that admitted culpability right there!)   They did find a dent in my scull that was pushing on the white and gray matter on my brain and wanted to do plastic surgery and put a plate in, I said NO WAY IN H@LL! Anyway, I digress, when they did the tests for the dent in my head, they found the MS. I already was in pain management, I could take two sheet of college ruled paper and not heave enough room to put down what I already had wrong with. MS sounded like a death sentence to me!  i have a very bad back and tons of nerve damage already!  I already knew something was wrong, I was having grand mall seizures and the light was killing my eyes, especially when it was bright and the sun would come through the trees like a strobe light, it made me feel like I was going to have another seizure.and sick to my stomach.  I don't tell anyone I know, but I am sooo scared! Especaily about my eyes!  I never had to wear glasses before, I had 20/20, and I only have to wear the cheapy ones that you get at the drug store. This morning I was reading something and realized that my eyes were getting worse.  Do you know anyone who has totally lost their vision from this?  I am so so so sorry for dumping on you this way, but I don't know anybody who understands har we go through and you post sounded like you were a good and upbeat person. So, thats thats.  By the way, where did you go to get out of  your head for week???

Sherry

[jujuminx]

Great post Alex!  I have been thinking the same thing for a long time now.  When I am busy and doing something meaningful, I feel great (even when I don't, if you know what I mean).  

When I am not productive, and don't have enough to keep my focus, I start focusing on what's not right with my body/or odd sensations.  It's the same here on this forum, I have to be careful with what threads I read cause it they are too negative, I find myself having more odd sensations. Mind over matter, yes to a certain degree.

You are such an inspiration!  It's a joy to read all your threads even the ones where you are struggling cause you always come out victorious.


Blessings, Julie

[anon07072023]

I'd really like to go to Scandinavia, too! It sounds awesome!  

[HVAC]

I would love to go to Norway. How exciting.

[Sparkysarah]

I entirely agree with you Alex that sometimes taking yourself out of your normal environment and doing something different that inspires and feeds our own passion, can be the best medicine ever.

I noticed when I went on holiday to Norway/Finland that I was excited and so distracted by all the actiivities and beautiful scenery that I just forgot I had MS. Whether it was the colder climate helped and my sensory sx were fewer or that I just was taken away from my usual focus I don't know and I don't care. But I found that this experience, although tiring and long days, enabled me to just be me and I forgot about the invisible dark cloak of MS that normally shrouds me each day.

It sounds as if you have found something that you are really passionate about that is firing your spirit and it is wonderful to hear of all that you are doing for people with MS. Thank you for sharing your experiences and well done.

Love Sarah x

[anon07072023]

Thanks Alex.  I'm glad that you found something that works for you. What I did was take twice my daily dosage of Baclofen after 5 days of going thru it.

[HVAC]

Julie,
  I think seeing you has been the highlight of both trips!

[HVAC]

To Kelly
my diaphragm spasms are not the normal MS hug. They are really rare it starts with pain between my shoulder blades and hiccups. I always do something very strenuous then I am sitting down and in a good mood. They are contractions effecting the diaphragm the band above the belly button. They last over an hour or two. They are violent and tear the connective tissue in my chest. They found that when checking out my heart. I can not breath in or out. I am messed up for two weeks after. It is as if the wind is knocked out of me. I can not speak and I can't get comfortable. It is the worst pain I have ever experienced.

They were a three months apart, then a month, now weekly. Luckily I now carry an instant tranquillizer which keeps them from being full force. The bad part is it is once I take the medicine I can't do anything else. Of course the trick is not being physical but I have not learned that obviously.

[Sarahsmom46]

I think that you have found your purpose - not that you haven't had it all olong, but it came full front this past week.  You found your niche, something you are good at, feel good about, and making the connections with others who are doing the same type of work and that is a high that I hope you stay on for a very long time.  

So, whatever is helping you with feeling better and more empowered these days, well, take it and use it to the hilt for as long as it wan't to stay.  

Be strong and keep moving forward.  

Julie

[anon07072023]

Yeah, sounds like the MS hug to me, too.

[jensequitur]

Sounds like you're having the MS hug!  They're usually caused (I would say always, but you know how that goes) by spinal lesions.

[Sumanadevii]

I agree with you HVAC.  If you are spending too much time thinking of how bad you are feeling, those symptoms are bound to be worse.  

Good for you in finding a new way to handle this awful monster.

[anon07072023]

Hi Alex, Can I ask you about your diaphragm spasms?  

A couple of weeks ago I started having pain along the bottom right side of my ribs that eventually extended passed my sternum.  Every time I'd try to inhale, it hurt like heck and I would have shortness of breath with tightness.  In fact, I noticed I was taking smaller breaths and then all of a sudden my body would just automatically try to take a bigger breath and it would REALLy hurt, where I would let out an audible cry almost.  It felt like it even extended to my upper abdomen and went around my ribcage to the backside, where it felt super tight. Is that how yours felt, or was it something different?  

They've only determined that mine is related to MS and it's something muscular - spasm/cramps....

Thanks,
Kelly

[candy158]

Good for you.  I have had time like that too, especially when we are holidays or need to be there for family.  But, it does work the mind over matter thing for awhile, then we need to rest and re-group, and that is OK, because we have the positive experience of the time before.  

I love when I am busy, because it does seem to help somewhat, but today, I'm not feeling so good, still fightingthis bronchitis and sinus infection, and only have 2 more antibiotics to take, ( that will mean that I did a 2 week stint with them), but I'm still so tired and barking up a storm, so don't know if I will need more antibiotics or not, will be interesting to see.

Just got back from my chiropractor, and he helped somewhat, he is great, and he helps me regularly, I don't know how we would do without him.

Hope you are enjoying today, but remember to rest , even if you don't want to, because you don't want this to come back with avenge, and bite you in the behind.  LOL

take care,
*HUGS*
Candy \

[HVAC]

I am a little sore but not bad. Sure wish I could have seen you.

My week is nuts and I am heading to FL on Friday AM. I have not flown since the 80's then twice in two weeks.

I had to write all the people I visited on the Hill, edit photos I took for the NMSS, and do some State level stuff. NC Legislature kept going while I was away.

I am having fun training Grady he is so smart. Polly is happy I am using her again she missed me, and I her. It is harder to get around with out her.

Next week taxes and back to painting. I need to clone myself.

I am so sorry about your leg I am sending all the encouragement for healing I can your way. You are such a dear person.

I am going riding today the first time in three weeks. I have to tell Pat to take it easy on me. She thinks I should ride for hours to make up for lost lessons. I have to lay down the law a half an hour is better.

Alex

[essdipity]

I agree that having an entirely different atmosphere can work wonders for a while. After a time, the 'newness' wears off, but while it works, it works. I can't imagine that any of us would want constant newness---think how exhausting. Yet being in the moment in a whole new world is great.

My question for you, Alex, is how are you doing now that you're back to normal life? I hope you didn't overdo things. It's so hard to get a balance, try as we might.

Well, spring is almost here, and that brings good things to all of us.

ess