Anyone know how many hours a day they can sit up?

[maddy522]

I cant even go anywhere.because i have to lay down,Please does anyone go thru this?Will this last forever?I am scared.lonely,forgetful.

[maddy522]

I agree,first of all, last time i had the puncture i did get the headache for five days.Horrible!
Your right,if i am going to have a new doctor i would like to see him and have some repor with him.
So we do have another set of Neuro's in Medford,I will check on.Thank you,I just was telling my husband I give up.BUT you have given me the strength to go on and keep trying.
Because having just fibro doesnt make you run into walls and numb  places on your body.Though i am in contstant pain.
Take care HUGS.Maddy

[essdipity]

Maddy, what you really need is a new neuro. The ones who won't condescend to meet with you aren't worth having anyway. If you do have MS, would you want him treating you? I don't think so.

Many many of us have experienced what you're going through. That's why this forum is so good for support. Please stay with us.

If by a spinal you mean a lumbar puncture, that won't hurt anything, except in the short run it could give you the mother of all headaches. But although a positive LP is a good indicator of MS, a negative one does not mean you don't have MS. If your doctor or his assistant thinks that it does, that's an important reason to find someone else.

Hang in there.

ess

[maddy522]

Well my friends i was so anxious to see this dr.and get my results.Well again I am not worth seeing.He is a way to famous and busy to see us new peons.So his ast. saw me again with all my test results.Blood work showed the usual high sed rate but that was all.The test with the wires to my head was not normal on left side,but not enough to worry about. The MRI had no changes.Same spots.I started bawling (this lady is very stone face)and she said if i wanted to know for sure if i have MS to go get a spinal.Or return in 6 months and do another MRI.I will NEVER go in that office again.
I stumbled out in tears,my blood pressure was 75/90.wierd hu? i have never been below 120.Maybe thats the problem?
I don't know,my husband who drove me said "OH u just need to eat better and get out more" Oh lordy ,Please!!!
What do u think my friends?
Should I just forget it until something serious happens?new dr.?I am definatly stopping my high bp meds.Should I get spinal?Thanks so much everyone,big hugs!Maddy

[tonyad]

How did your doctors appt go today?
Did you get any answers???

~Tonya

[meg321]

Okay, its 2:30....waiting to see what the Dr says...

meg

[Lulu54]

good luck tomorrow with the neuro - I hope there will be answers and a course of treatment for you.

my best,
Lu

[maddy522]

Thank you so much for your responce.Tomorrow will be the tell tale facts from a ton of tests.I SEE NEURO AT 100 FOR FINAL RESULTS.
My Dr.and I are positive I have MS,But the neuro needed all his own  tests done.I never thought i would say this,but i hope it is MS.I don't mean to sound nuttso, but i want a dx so i can get on with my life. Like Meg was saying, I am usually a positive person. But it is too hard to be, with all these things happening to my body and not knowing.Grr, It started with fibro,then mini stroke,blurry eye and so on.
last MRI was not normal ,he did another.So one more evening and then I will know.
What am I going to do if they say they dont know?Oh God, I DON'T KNOW WHAT i WILL DO!
Tickey,i am on 5000 vit d because i was totally depleted.i will have to try your idea also.
Lulu,It is the weakness,fatigue,exhaustion.I want to sit up and paint.I can;t.So ya I am sad.No shopping,Hubby is doing everything.bless his heart.Hugs,to you all.Maddy

[meg321]

We do need more info if you dont mind but this desease does do that to us..and to different degrees.  There was a time when I could not walk to the kitchen without lying down again.

It has been from fatigue, dizziness, difficulty breathing, depression....

but the good news is it did get better but you need to know what to treat, there are meds for the fatigue that helps big time...copaxone for ms has helped..exercise helps a lot and just a little walking and I do have some exercises i was given by my therapist for the dizzy's...but it helps just to make yourself MOVE....and change your attitude.

Staying POSITIVE was huge in my life....it was better than meds in making me better,

i still have the brain fog that keeps you tired too and the things that come with that, if I could just remove my head i would be sooooooo much better.

I didnt do all of these things very fast, i balked at every turn..lol

.Everyone here will give you good advice...take what works for you and store the rest in your brain that doesnt work now,sigh....you can always ask again, we are all here for you and everyone understands why you sometimes use wrong words or don't make sense at times.

this may not have helped you at all but it sure helped me to write it....Thanks !

hugs, meg

[cainer]

well  i dont know if this is what  u  mean?  but with me oh...  yeh get soooo tired have 2  lay down  not sit  at times  happens all the time now.

  i  did take this on myself-  heard about  vit  D3  with calcium  it helped  a GREAT  deal!!    4  me anyway-  made me stronger  -  was taking 6,000  ius at a  time-  3 times a day-   u  might try it-   but it has 2  have calcium  with it  or  it will take it  from  your bones-  that  u  dont  want  

   i  dont think  anyone really knows how much  2  take  but it can  b  toxic  - but i have done this since march  of this  year


reall feel  if i  hadnt  i  wouldnt  b  doin  much of anything  know-   well check  it out---  

wish  u  the  best  hope  u  get  better!!!    tickey

[essdipity]

Are you by yourself? Is there anyone to help with the basics of life? Perhaps your local MS society can make some good suggestions.

Also, of course, there are many meds to help with MS symptoms. You do need to let your neuro know about your circumstances and disabilities. Very possibly some medications can help you.

Meanwhile, visit here with us often. We have a group of wonderful friends who do understand, and who are a good remedy against loneliness.

Sending best wishes,
ess

[Lulu54]

Hi Maddy,
This has to be horribly frightening for you.  I have not experienced this problem, and don't remember if anyone else here has either.  Have you talked with your neurologist about this problem?

How long have you been experiencing this weakness  ?  Do you have to lay down because of fatigue or is it from something else like muscle weakness?

I'm sorry I have only more questions for you and no answers.

I hope you will come back and we can chat more to work through some ideas of what you can do next.

my best,
Lulu