hi im new here and I just wanted to share my story on multiple sclerosis, so not long ago my mom past out from multiple sclerosis and so when I went down stairs I just wanted something to drink and then my dad said honey your gonna be fine and I said what? and he told me that he found my mom like that (past out) and so I went into the kitchen and asked him what happened and he said he didn't know what was going on, then the 911 operator was saying that the ambulance would arrive any minute but the only problem was is that my mom wasn't breathing so my dad gave her mouth to mouth and then minutes before the paramedics arrived my mom woke up from her black out I was so worried about her then the paramedics asked my mom a bunch of questions about it and my dad said got get your brother were going to the hospital for mom so as I walked upstairs I told my brother that we was going to the hospital for mom and then he yelled in my face like it was my fault and everyday to this point I blame myself for letting that happen to my mom.... when my mom got home from the hospital my mom and dad said I could be a trauma nurse and that they were very proud of me:)I just wish my mom never had multiple sclerosis
I have had MS since 2003. I went blind for a month and have permanent vertigo. For me to control my vertigo I have to take 3 10 mg Valium a day. I did not have another major attack until 2015 which hit the cognitive part of my brain. It is very difficult for me to speak so I am learning sign language but I probably have 2-3 blackouts a month. I also did the 4 day test with the wires and the video camera and all test results came back normal. If my brain gets over stimulated it shuts itself down by giving me a blackout and I can have them anytime or anywhere and they do not have an answer for me other than the cognitive part of the brain was hit instead of the physical part
This was happening to me long before my dx of MS. I have had about 20+ fainting episodes over the past 40 years. My MS dx was 5 years ago. It is usually prefaced by slight niggling pains in my lower abdomen. I start to feel nauseous, prespire profusely, I want to be sick and use the bathroom all at the same time, and then everything goes black and I pass out. I am icy cold when I come around and my body is soaking wet. I feel much better after I faint. I I wouldn't wish the feeling on anyone.. The whole thing takes usually about 90 minutes.
One doctor said it was a vaso vagal incident, another said it was a spastic colon, another didn't know and yet another said it was caused by stress, so I just put up with it. I can go 3-5 years without an incident. I dread it. I have never really linked it to MS though.
To be honest, just the thought of it while writing this makes me feel queasy.
Marcie
hi ladies it is funny reading this post as i just came home from the hospital for that very thing i am in a relapse and i guess i wwas laying on the couch with a hoodie on curled up in a blanket with my two small dogs cuddles up. my respirations became kind of laboured anyways when i woke up my husband had called an ambulance i guess i fainted so they took me to the hospital the hospital did an electrocardiogram, bllod wotk urine tests checked my bp an stuff monitored my respirations they could not find anthing wrong except they said i have atemp .
I am not sure how to comment on this one. I know that when I am out shopping or whatever if I don't have a cart to lean on or if I stand in one place too long looking at something, or it the store is hotter than normal I feel like I am going to pass out. I have even stopped and sat on the floor in order to get past it. I have never actually passed out though.
This is a very interesting topic to me cause I have never thought of it as MS related, not sure why but just never have. I will have to discuss it with my neuro. I have never had a problem with my blood pressure so I am sure it isn't that.
Keep us informed of what caused it if they ever find a reason.
Take Care and feel better,
Paula
Thanks to all that answered but I am wondering about the orthostatic hypotension since my bllod pressure is very erratic at the best of times.
What I have noticed in the last couple of years is that I cannot stand for long periods of time, I can walk reasnable (half mile) distance but I cannot stand as I start to feel as though my legs are going to bickle and I feel quite dizzy and nauseaous.
On Saturday I had tried to be very clever and was teaching in th emorning and tried toi stand for a lot of the time to see if I could do it - not clever eh?
I don't know enbough about the causes of orthostatic hypotension and will check out with my medics.
BUT - would that still cause me to feel ill today (Thursday) or is something else going on? would it cause the dizziness that went on for several hours or the need to use a bedpan or soil myself even though I couldn't stand up almost as soon as the ambulance reached the hospital?
Pat x
Quite often people with MS have problems with orthostatic hypotension - fainting when their blood pressure drops, like when they stand up, or sit up. With your cold sweats, I have to wonder if it's that...
Faiting is what finally led to my diagnosis, (not MS). In my case it was the blood work that was ordered which showed problems, and the doctors who actually listened to the blood work and did a furthur work up. I still get the fainting feeling sometimes, but in my case I think it's now caused by low blood pressure. Drinking electrolyte drinks, or even more fluids seems to help me. Now that I know the feelings I don't actually black out because I know wha the waning symptoms are.
Okay update here:
Spoke to the specialist MS Nurse who feels it is more like epilepsy than MS but pointed out that epilepsy is more common in the MS population. She will speak to my neuro and get back to me about whether he wants to follow this up.
In the meantime feeling a bit better today and starting to eat, still can't stay upright for too long and soooo bl***y tired.
Thanks to all for yoru experiences.
Pat x
Dear Pat,
I am so sorry you are plagued by this! I certainly know how you feel with 3 1/2 months of vertigo last year. I did sleep almost non-stop. I also could make it to the bathroom some days before the spinning hit again.
If it's been decided that you have an ANS issue then I would think, most likely, it stems from that. If so, keeping hydrated will help with that.
My vertigo marathon lasted 3 months+ and called a relapse by 2 neuros and 2 ENTs and one neuro-otologist.The final dx of the ailment was labeled CNS origin vertigo. NO treatment really. They checked my long list of meds and said none of them should cause these symptoms.
I don't know if my information is useful, but do know I will be keeping you in thoughts and only sending good thoughts and vibes across the pond.
Hugs,
Ren
I have a tendency to pass out when it's really hot! (several times this has happened in queues at Disney we don't get really weather over here) I have always thought it was dehydration. I have a strange feeling creep up me and my hearing goes weird, my legs start to crumble under me- then Black it all happens in about 10seconds . I know the signs now as soon as the hearing goes sit down and get my head between my knee and cold water on the back of my neck no matter where I am.
But in the last 12 months it has happened twice with no explanation of heat or dehydration.
It doesn't take me long to get over it and I have never meantioned it to a dr.
Now you have me thinking!
I found that fainting was related to the heat. It seems like the heat begins in my legs traveling up my body to my face. The first two times I was out and taken by ambulance to our local hospital,. They would stick an IV in me and run blood tests for sugar, etc. Nothing was ever found. Today when that feeling comes to me, I ice the back of my neck and begin drinking great quantities of water. Problem was solved for me.
Sorry my response has been slow but remember I am across the pond asleep when you are awake!
Yes Slowe and Ren you can be hens as much as you like and join my DH who is pouring water down my throat none stop. He clucks enough for both of us thank goodness. I will try to eat something today but my tummy just doesn't want it!
I did wonder about vertigo too as the dizziness was so bad I could not open my eyes for several hours and even now standing for more than a couple of minutes to go to the bathroom and back makes me whoosy. But as I can still do that I had ruled out vertigo? What do you think Ren? you are an expert in this one :)
I think they have already decided that the ANS is involved in my MS as I have had so many other sx related to this.
Hey Guitar-Grrrl great to see you too, don't know enough about the vagus nerve but will defo research when I feel well enough.
Strange thing is that I have been so very very tired since it happened so much so that when they tried to move me to get me on a chair and out to the ambulance I just wanted them to let me sleep!! This made me wander if it was a relapse or a bug - how can I tell - I have no other sx pointing to a bug either?
I slept almost 24 hours when I was discharged and have spent most of my time cat napping ever since.
Beema36 that is also something I must look at standing for me has always been an issue - and I had just done 3 days of teaching a Masters level class for 4 hour stretches and thought I was being clever trying to move between sitting on a desk and standing so the class would not notice I was having trouble. Coul dthat have brought it on?
Love to all of you for being so caring.
Pat x
Yes I have syncope episodes and have ms. I am also diagnosed with autonomic dysfunction which my neurologist feels is secondary to my ms. He says lesions can be in area that affects those functions. I also have very labile bp. When I faint it bottoms out but can be very high and I am bp Meds for it.
My electrophysilogist put me on betablocker and I am to drink lots of.fluids and not to.stand over 7 min. Hope u feel better. It's a horrible feeling.
Beema
Hey, Pat! Good to see you here. Sometimes the vagus nerve can be involved, wreaking havoc on vaso vagal tone.
Just my $0.02
i passed out- wrecked my nice jeep!! im sure its ms- i have seen -well to many that say they have- i miss that jeep-
I have a history of fainting on long distance flights. have never worked out why as I do not mind flying..but my own theory is that it is when oxygen levels dip. This is obviously very different to your experoience but I always wondered after my dx of MS if it had anything to do with it. My consultant did not think it did..so probably just one of those things.
Sarah
PS Cluck, cluck,,joining the hens so drink up
Hi,
The same thing happened to me about 5 years ago. Hospital ran EEG, CT scans, MRI etc. This was pre-dx. I was placed in the telemetry unit as they thought it might be cardiac induced. I had some rather severe spikes in BP (210/110 while sound asleep from drugs) so cardiology did a full work-up, echo cardiogram, etc.
The rest of story is how my vertigo presents. You HAVE to keep some fluids down even if you can't eat. SMALL sips is the way to go.
I do hope this passes soon and like shell said, make sure your neuro is aware of this. My general neurologist told me that he thought it was MS related and referred me out to the 1st of my MS neuros.
Now get to drinking lady! Sips of tea,ginger ale is great or something even if it's just water. You certainly don't want to go back to the hospital do you?
Big Hugs from another nagging hen and I hope you feel better soon!
Ren
Hey you,
Geez, 10 yrs inbetween this. You must of been blown away that it happened again. So glad you didn't get hurt from the fall.
I dont' have the experience, but this is alarming. YOu make the call to neuro yet? I know you say your tired, but Pat, you know you have to right?
You need to force that grub in you too :( Sorry to be the hen here, but it's important. All sorts of things can happen w/out food and for the MSers, our immune systems are better w/out fluctions (that can happen w/out food, etc.).
Thinking of you, and I don't mean to be a nagging hen :(
(((hugs)))
~shell
Thanks Jenny, I was sitting down when this happened and although stressed and tired when I have a 'normal' faint I usually recover quite quickly say 20mins to and hour. When this happened to you did it last very long? I was unable to get up, open my eyes, etc for over 6 hours afterwards and still have the effects today.
Hi Pat,
About 3 years before my diagnosis, I fainted and blacked out... was very stressed, was during December, a stressful month. Last week, again stressed, I was about to faint again but was saved by sitting down, gatorade, and saltines I suppose. I think it's stress-related, but who knows? Just know you are not alone!
- Jenny