ughhhh

[chefaid90]

Ended up going to the ER the other night. I was busy doing stuff when all of a sudden like someone flipped a switch all the muscles in my body hurt so bad. I went to go lay down. I was able to scratch my foot with my one foot but when i wanted to get up my legs just wouldnt move for over 10-15 minutes. so i finally decide to head to the ER. when i get there i was less than  thrilled. i had to go to my local ER as I wasnt able to head into the  big town 50 miles away to go to the university hospital. the doctor told me there wasnt really anything they could do for me since i already tried neurotin, and 3 different muscle relaxers. I was told i should call my neuro and get an appt again soon and that he would suggest getting another mri and spinal tap done. he told me i was having dyskinesea or something like that. he was trying to do a neuro exam and i was having major problems getting my feet and legs to move like he wanted me to. plus they were shaky doing them.

The only thing my neuros keep telling me is they are looking for is a rare hereditary muscle disorder but alot of other people i deal with dont believe it since my sx are different than my moms sx whos sx are different than my sisters sx. we all have problems but very very very few sx are the same we have many many more  sx different than similiar.

I have been so so so exhausted ever since this happened. I am still in pain and still very tired and fatigued. I called my neuros they told me to just keep my appt in 3 months from now. I cant walk the stairs to go to the bathroom and back down without being utterly exhausted. I am sleeping much of the day and night and could probably sleep 20hrs a day if I didnt already know that is would be bad for me to sleep that much.

I dont know what to do. I cant keep going on like this.

[chefaid90]

my pcp refered me to a neuro for second opinion. lets hope i can get an appt in some time soon.

[HVAC]

Sorry about your situtation. ERs seldom help. They are more geared to strokes and heart attacks. Most just refer you to a Neurologist. What does your neurologist specialize in? Some know little about MS. I had one who specialized in head aches swear I did not have MS and 6 other Neurologists before and after said I had MS. You might think of a second opinion with a MS Specialist. Or can your PCP treat symptoms? Mine does more for me than my MS Specialist who I only see every 16 months because he is so busy.

Alex

[chefaid90]

i dont have the funding to get to the ER 50 miles away. and the next closet muscular neuro is 500 miles away. They seem to just think its some rare muscular disorder that only time will tell what it is. i had to fight with my muscular neuro to get a glimps as to what he was thinking.
I ER doctor I saw was thinking MS too and thought a new MRI would hopefully show lesions this time.

[Ojibajo]

That seems pretty severe for them to say, "Oh gee....you suddenly can't walk...just suffer and come see us in 3 months."  Are you in the US? Is that the only neuro that you can go to? Can you make an appt or get a referral to someone else or even go to the other ER that you were talking about that's 50 miles from your house?

[chefaid90]

forgot to add my left half of my body was also itchy for almost 2 whole days. not even benadryl got rid of it.