Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
For all those that don't know my story...ima 27 yr hispanic female who spent my short years working my ass off as a nurse and I no longer work going on 6mths now..this relapse has taken the longest with no sign of relief...I rely on my boyfriend and family for everything and I maintain still the home, bills and our dog..
>symptoms
-ima wall hugger who refuses to use a cane for balance even tho sometimes I have no choice
- vertigo/dizziness/ drunk feeling all the time mixed with the balance I look drunk walkin my dog
-nausea/lack of apetite I lost 15lbs from not eating right. I only get hungry when I smoke mmj
-ii recently slur my words so it furthers the drunk look
-severe dull achy sore pulsating leg muscles which make walking very painful n hard..sometimes its a tingly deep inside like some1 is ripping my muscles
-muscle spasms on my back/arms n legs
-considerable memory loss/cognitive issues
-right arm is half numb/tingly painful which is worse in the cold
-moderate anxiety/sad/mood swings
-teeth are all falling out from poor health(I never used to have prob now 5 teeth missing)
-severe sensitivity to touch it hurts to touch my legs
-peeing is a mission I can't go when I wanna I gotta sit there n force it out by straining
-chronic urinary tract infection
-fatigue
-bending/lifting/carrying anything over 10lbs is painful n I suffer the aftermath with intense arm/leg pain
-insomnia
I've been soooo bummed cuz I can't do shit..can't cook, clean walk long distances, can't drive even sex is tuff cuz my back n legs hurt but I can't let my bf know that!...its a lot I filed for ssdi n its a waiting game...and can u believe all these s/s I am still able to go thruought my day little bits at a time..but lately its been getting harder n harder with worsening of my symptoms...
>story! I went all yesterday in bed feeling like I had the flu and got hit my a truck..couldn't cook clean etc and my bf gets home from work, I smoke a blunt and magically my ass is up happy no words slurring, able to get up n cook..I wanted to cry of joy but it only lasted 2hrs..but I was happy for those 2hrs...I look homeless sometimes cuz I can't keep up with the girly shit..I feel unattractive and like I'm holding my bf back from finding someone who can enjoy life with no disability...makes me sad n I think bout it all the time..would he be better without me....no I'm not the same as I was a year ago..I used to party..work like a robot go do adventerous things now I fuckin stay homebound...ugh sorry I needed to vent idk how people live like this..I know positivity n all which I have but when all those s/s are at once wtf? Its just too much..
>symptoms
-ima wall hugger who refuses to use a cane for balance even tho sometimes I have no choice
- vertigo/dizziness/ drunk feeling all the time mixed with the balance I look drunk walkin my dog
-nausea/lack of apetite I lost 15lbs from not eating right. I only get hungry when I smoke mmj
-ii recently slur my words so it furthers the drunk look
-severe dull achy sore pulsating leg muscles which make walking very painful n hard..sometimes its a tingly deep inside like some1 is ripping my muscles
-muscle spasms on my back/arms n legs
-considerable memory loss/cognitive issues
-right arm is half numb/tingly painful which is worse in the cold
-moderate anxiety/sad/mood swings
-teeth are all falling out from poor health(I never used to have prob now 5 teeth missing)
-severe sensitivity to touch it hurts to touch my legs
-peeing is a mission I can't go when I wanna I gotta sit there n force it out by straining
-chronic urinary tract infection
-fatigue
-bending/lifting/carrying anything over 10lbs is painful n I suffer the aftermath with intense arm/leg pain
-insomnia
I've been soooo bummed cuz I can't do shit..can't cook, clean walk long distances, can't drive even sex is tuff cuz my back n legs hurt but I can't let my bf know that!...its a lot I filed for ssdi n its a waiting game...and can u believe all these s/s I am still able to go thruought my day little bits at a time..but lately its been getting harder n harder with worsening of my symptoms...
>story! I went all yesterday in bed feeling like I had the flu and got hit my a truck..couldn't cook clean etc and my bf gets home from work, I smoke a blunt and magically my ass is up happy no words slurring, able to get up n cook..I wanted to cry of joy but it only lasted 2hrs..but I was happy for those 2hrs...I look homeless sometimes cuz I can't keep up with the girly shit..I feel unattractive and like I'm holding my bf back from finding someone who can enjoy life with no disability...makes me sad n I think bout it all the time..would he be better without me....no I'm not the same as I was a year ago..I used to party..work like a robot go do adventerous things now I fuckin stay homebound...ugh sorry I needed to vent idk how people live like this..I know positivity n all which I have but when all those s/s are at once wtf? Its just too much..
Chin up honey it can always get worse! You have to use what you've got left--I'd do disability if I were you. Took me a year and a half but without constant stress on me for work and stuff I do a tad bit better...found a "new normal" where I mostly stay in bed and paint.
Hang in there!
Honestly is natural and I havent had a single UTI since...bladder issues make those things tenacious and antibiotics will just destroy your body.
I am entirely on natural meds for everything--its working! (at least, it works better than any of the western meds ever did...)
http://www.amazon.com/Now-Foods-D-Mannose-Powder-3-Ounce/dp/B000HCMK90/ref=sr_1_1?ie=UTF8&qid=1314202503&sr=8-1
For 5 years post dx it was "a little bump here and there" - then this year (6th year post dx) I feel like the pavement flat out gave way and I'm going down a dirt road at 90 miles an hour. Ugh. I have been looking forward to my neuro appointment for 2 weeks so I could finally vent all these problems out and my appointment was moved out another 3 weeks. I literally went home, climbed in bed, and cried for two hours. My husband was wise enough to know I needed space and took the baby out for a while so I could just greive and vent. Anyway, I feel better today at least having given myself that time.
I'm 25 and feel like I'm 100. I know it's tough, but we'll make it through, we just have to keep pushing and smiling! Hope you feel better soon.
I am all too familiar with the symptoms you describe. It takes an awful lot to do simple physical tasks for me too and I'll tell you, as you age, it does not become any easier at all. I'm 55 right now and I feel like I am 100 years old it seems at times.
I think you are under a lot of stress due to your inability to work and the problem with getting Social Security disability benefits (which you most definitely deserve being you have worked and paid into the system for a long time).
Don't give up and think all of this is permanent. Perhaps once you get your life to a more comfortable level, things will slow down for you.
It seems to me that once I finally got my SSDI benefits that a huge weight was lifted from me and it seems that the MS slowed down a lot. I cannot remember being as sick as I was with MS some 18 years ago ever.
I too have had several episodes of optical neuritis and had lost all of the vision in one eye for a long period of time but it did gradually improve to a point to where I can now see out of the eye but I cannot read nor fill out forms very well because of permanent damage (blind spots). I've also had my other eye affected some years later and luckily it recovered quite well.
When I am in the heat, I get worse but the cold also has a bad effect on me. I feel like I need to stay at about 65 degrees all of the time to feel comfortable.
As for your boyfriend, well I'd say this is a big test for your relationship with him. If he truly loves you, he'll stay with you, that is about all I can say.
I hope you can get the benefits you deserve soon. I understand there is a large backlog of cases for SSDI these days and it is unfortunate that people like you (and other with MS for that matter) should have to wait for long periods of time as it just causes the whole thing to only worsen IMO.
As for the bladder infections, I take cranberry capsules whenever I feel an infection coming on. I believe they have helped prevent more than one bladder infection. You should probably see a urologist if you are having great problems passing urine as that is not good on any level whatsoever.
Try to take care of yourself best you can and again, make sure you get a lot of sleep as we heal when we are asleep.
>and I think ur right once the stress of the ssdi n state assistance is over things would b soooooo much better cuz we won't have to worry bout money or medical probs..ugghh the storm will pass