needed to say it - Multiple Sclerosis Message Board

w0rldflame · 06-23-2008, 01:40 AM

Hello, Everyone it has been a long time since I posted.. Infact its been almost a year I think.

either way I just needed to post because all though I keep trying to tell myself this is all in my head and I try to ignore it hoping it will go away. Well, its not going away.

today I woke-up with my rightside feeling like it was asleep, thought I just slept on it wrong but it hasnt woken-up in the 12 hours I have been awake. Over the last week I have had a clearly noticable and clearly annoying eye twitch, along with eye pain and that hazy white cloud over my vision. My legs have been burning and giving out and I have what feels like crawling skin ( best way to explain it ) everywhere.

the doctor's once told me it was stress, so I took care of that. I was under more stress when I was 8 years old ( no joke ) then I am now. told me it was aspartame, so I eliminated it. told me it was my weight so I have lost 40 pounds over the last 8 months. they also told me I needed more sleep, believe me I have been getting ALLOt of sleep.

So, I am just wondering when my head will kick it that there isnt really anything wrong an the doctors were right. Or when am I finally going to have some answers.

I have tried to stay off the internet researching things or listening to things. I have tried to ignore it and just go about my business. But, this just isnt going away and I am 90% sure that I am not crazy and am not blowing something minor out of the water.

just needed to type this so that maybe I will be able to sleep and better ignore the arm numbness and the eye twitching and the crawling skin. although I think it will keep me awake for awhile.

I hope everything is working out with everyone. I hope that Niki's job situation clears up and your boss stops being so stupid.

I hope everyone has a cool summer, its been 105 degrees here for the last two weeks, its like an oven outside. I hope against hope that everyone else has a mild summer.

I am sorry for the horriable misspellings, I have been having alot of trouble remembering some words, please forgive me.

w0rldflame signing out.

MSNik · 06-23-2008, 07:01 AM

Hey worldflame- missed you! Glad to hear from you! ...what in the world is going on with you?? Really- aspartamine cut backs, more sleep, none of this addresses your complaints, even if they are helpful suggestions....

Where are you right now as far as dx and meds? And, is it time to see another doc, one who might be more on top of your complaints and issues? Have you been seeing an MS Specialist, or simply a regular neuro, because from what you are writing, it sounds like its time to pull out all the stops!

Im sorry you are having a hard time and this is PROBABLY NOT in your head..its legit - its scary- and you need to be proactive about the symtoms, not the stress....heck, this NOT KNOWING will cause MORE STRESS than you probably had to begin with!

Were here for you, thanks for keeping up with us...and let us know how we can help.
Hugs
Nikki

jlbrow7 · 06-23-2008, 11:00 AM

wOrldflame,

Nikki knows of what she speaks; listen to her and you'll be in good hands.

w0rldflame · 06-23-2008, 01:26 PM

Hiya, Niki thanks for the reply.. it was actually wierdly comforting ( guess it helps to know I am not alone )

as far as a DX, well after my last round of doctors telling me go see a pshycololgist ( spelling ) who told me I wasn't crazy, I lost my insurance. My husband is now the one working and has a job that offers good insurance ( $5.00 co-pays for anything ) however it will also be an HMO once it kicks in, which should be in the next month. So, I am debating what to do, I know on HMO's you have to be referred for everything. But. I am not sure how to get a doctor to listen and see what is going on before stating I am crazy.

In a way I keep waiting for something major to happen so they can't deny there is a problem. But, I think what is going on feels pretty major.

I thought with losing the 40 pounds that most of the complaints I previously had would go away, Including the sensitivity to heat. However, it hasnt happened so I am wondering how much weight do I need to lose before I see a difference in symptoms?

How, is everything working out with you and the job situation Niki?

MSNik · 06-23-2008, 01:36 PM

HI, please dont ask about the job..its a 4 letter word for me (but seriously, thanks for asking!) It will never change until I change it..and Im working on that, trust me!

As for you- losing weight isnt going to change things if this is MS...especially if you are having heat sensitivity issues....although it is good for you overall to be at a healthy weight (congrats by the way)...if its MS related, it wont make a difference.

Youre not alone- know that. ok?? First thing you need to do is go see another doctor, perferably one who treats alot of MS patients...if you dont have an MS specialist, then a good Neuro who knows his MS...not one who treats migranes and Parkinsons- they wont help you with what you are dealing with..

Second thing to do is try to get an MRI ordered immediately of your brain/spine with and without contrast.....see what is going on in there and what has changed since your last one. I get them every 6 months...it wont hurt you..if your insurance NOW is good- do it NOW. Then, start trying to find out what primary care docs are going to be listed on your new HMO and see if you can research them. You want to find one who is famialiar with Neurological diseases, and one who will be pro-active in sending you out for needed tests...crazy, but in my opinion, finding a doc who is an Osteopath (DO) instead of an MD usually helps me ....DO's seem to be more proactive, looking for answers..but thats just my opinion. I would start reseraching the list of primary care docs which you'll have to chose from asap....also, while doing this, start getting copies of all tests and records from anything youve had done before...keep them with you so that if/when you have to change docs, youve got reports, films, whatever ready and you can save both yourself and your new doc time in getting things rolling..

Hope this helps alittle..
Try to relax, more than anything- ive learned this month that stress will take us over the edge- so try not to worry about what you cant change and concentrate on what you can.
Hugs
Nikki