Limbo land .....worst week ever..

[zuzu20]

It's just been about the worst week ever. I have hardly slept a wink maybe a few hours during the day if i am lucky. I had a few good days last week working with my treadmill to get some excersise (sp) but today I could hardly get my legs to move at all. My left eye went totally blurry but came back. My arms are now feeling like lead weights too. I am going crazy here waiting and waiting for an app I almost wanted to call for ER today when I could hardly walk. And when my eye went totally blurry. Arg I am so frustrated. When is you should call the ER. How bad do you have to get to get some attention from the drs. to get things going. Does Sleepless nights make MS worse???? sorry needed to vent in limbo land. I am still waiting to hear from my Neuro to make an app. I feel like calling on Monday to my drs. again to remind them...

[MSDO106964]

It's a shame what you are going through and that it's taking so long to see a neuro doc. I think I saw in another post you are in Canada? Swell health care, huh? What we've got to look forward to here in the states....I have an appt with neuro next week and it took a few months but only because I wanted to be seen at the Mayo Clinic and that takes longer. I could have seen another neuro fairly quickly if I'd wanted. It does seem horrible you have to wait so long. If you went to the ER would they make a quicker referral for you to see a neuro? Hang in there and let us know what happens. We care.

[minivanmama]

zuzu20 - Sorry that you had a bad week. Not sleeping well can make your symptoms worse.

I know it is frustrating when you are feeling bad and don't know what to do. Going to the ER is really up to you. If you don't go to the ER call your doctors on Monday. Let them know what is going on.

Just keep calling. I know that waiting is really hard and frustrating. I am sorry that you are having to wait so long. I know i would be going crazy. We are here to help you keep going. Post and vent anytime you need to. Keep hanging in there.((((hugs))))

[karriew]

I think its plain rough being in limbo dx wise. Am in similar position, but primarily because I do not currently have insurance. I've been paying out of pocket while trying to get coverage.

In my experience, lack of sleep can make just about anything physically or emotionally worse than it would be otherwise. I know when I'm rundown, not only do I feel more "MS-y", but I also am less able to cope with feeling "MS-y."

Personally, I wouldn't go to the ER for what you have described. It doesn't strike me as a medical emergency--just uncomfortable, and annoying. I would imagine they'd check your vital signs, ask how you're sleeping and feeling otherwise, etc. and send you a large bill.

If the visual disturbance worsened though, I would consider it, since you could have another more emergent cause other than MS, and because steroids or other treatment might help slow or reverse the course. (My vision in my right eye is severely damaged from repeated bouts optic neuritis.)

Instead of going to the ER, I would focus on ways I could get some rest, and really take extra care of myself otherwise. I had pretty bad vertigo last night and still feel off this morning, so I'm taking it very easy today. JMO, and I'm not trying to tell YOU what to do--just answering how I would view a similar situation.

I hope you're feeling better and have some answers soon!

[zuzu20]

thank everyone It's been pretty rough week. the only thing keeping me going is the comfort there is some place to talk to. I think it would have been a wasted effort to go to ER. They are so full and you can expect to have a days wait to get in. I would have a easier time calling dr on monday. I think I was having a bit of a panic attack earlier when my vision started to go. its strange but as soon as I start getting blurry eye or double vision my legs are soon to follow.

I been trying hard to get back in to shape again I gained a lot not been able to do much and the only thing the dr would say if I went to the ER would be to lose some weight and get some exercise I don't think it be any faster to get in to a Neuro. by going to an er. I just have to pester the dr. again.

The good part is you don't have huge health bills thats the idea and that everyone is covered You pay a medical bill i think to what you make I am on disability now so I am covered but when I was working i had to pay like 30$ a month depends. (to some extent does not cover everything.) Which is pretty good but the wait is just horrible. That is the unfair advantage. as i have mentioned before. I feel for you guys who have to get insurance and can't because of existing health problems or just not being able to afford them I know some of what your medical is like but not all. I know you don't have to wait years. I could go privately but the cost is not what I can afford.

I don't know what this no sleep bit is about A week ago i was sleeping all the time now I can't settle down. I know I need to run or do something but when you don't have any balance it's nearly impossible. To get your heartrate up and going. I have a good diet I don't go to fast foods and avoid packaged foods. The weight gain is just from not doing anything. arg ....I have started gaining weight five years ago when all this started. I wasn't ever skinny skinny i was just average. I think that the most frustrating part of it not being able to get up and just go somewhere. Relying on other people something i have had to learn.

I had a funny thing happen to me I was making a batch of Ice tea and when I went to pour it in to my jug i pourd it down the drain while holding my jug. It took me a bit then relized then Oh noooo. A ms moment or lack of sleep moment . lol
sorry if this is long.

[motheroffour06]

ZUZU
Sorry you are going through this. I hope you grt answers soon, LIMBO is a Frustrating place to be.

And NO sleep is probably not helping much.
Do you get any rest even though you are not sleeping?
you are in my thoughts

Valrie

[ShakespeareMama]

I can say, from personal experience, that going to the ER did not help me.

I went in when I had lost my vision and they did an eye exam, said I DIDN'T have any abrasions...and then gave me an Rx for an abrasion. I didn't take the stupid medicine because I'm all set with shoving stuff into my eyes for something I don't have.

Another time, I went in for severe pain on the left side of my body. They gave me pain meds that I ended up being allergic to, and sent me on my way.

Even when I went in after having a seizure, they did a cat scan and blood work...saw nothing and told me to go home.

And that, my dear, are my lovely experiences with the ER.

I am in limbo, as well, and I hope for every one of the limbo landers on here to get a proper DX soon and not have to go through the madness for much longer.

I send you hugs and hope. Feel better!

[dakota99]

Canada

HI ZUZU,
I DID NOT LIKE THAT ONE COMMENT FROM SOMEONE ABOUT OUR HEALTHCARE SYSTEM. THEY HAVE NO SYSTEM SO DON'T EVEN THINK ABOUT THEIR COMMENTS.
I HAVE NO PROBLEM GETTING INTO MY NEURO. I CAN GET IN THE SAME DAY OR THE NEXT. IF YOU HAVE NOT BEEN DX YET, THAT COULD BE THE PROBLEM. DURING MY WORST EPISODE, I DID GO TO THE ER IN NEWMARKET ONTARIO. THEY KEPT ME FOR 2 WEEKS AND I WAS DX SOON AFTER, SO THE ER MAY BE THE ANSWER DEPENDING ON WHERE YOU ARE AND HOW SEVERE YOUR SYMPTOMS ARE.
GOOD LUCK AND DO NOT GIVE UP ON OUR SYSTEM ITS MUCH BETTER THAN THE ONE SOUTH OF US

[zuzu20]

thanks, It is just frustrating, i am dragging my self around the house it is very strange feeling it's like my legs are moving but it takes effort with every step. I have to think and make my legs to move I have extreme pain and i can't blame it on the weather the weather has been lovely. when I stop I feel the pain. I'll be calling dr on Monday. but i am afraid almost because i have a three day trip i am going on soon I don't want to be stuck in the hospital. I am also wondering how the heck I am going to manage it. Taking my grandmother to see my other grandmother who are amazing and doing better then I am. they're in their mid 90's. It will be the battle of the walkers when we go as to how to get all the walkers in the Van. Ha i can hardly wait for that one. here i am at 39 and these two out do me.