TELL ME A LITTLE ABOUT YOU

[diguilio]

HI.....I WAS DX IN 1996....IT WAS HARD FOR ME AND MY MS HAS TAKEN OVER MY LIFE....I HAVE GOOD DAYS AND BAD DAYS.....MORE BAD THEN GOOD. I AM 40 YEARS OLD....I HAVE A DAUGHTER WHO IS A SENIOR AND I AM SO PROUD OF HER....I LIVE WITH MY PARENTS AND I FEEL SO BAD BECAUSE I DIDN'T THINK MY MS WOULD GET THIS BAD.....I CAN'T WALK AND I CAN'T FEEL.....AND I DON'T FEEL I WILL EVER GET BETTER......TELL ME A LITTLE ABOUT YOU?

[JerryD]

Hi diguilio,
I wasw dx'd in 2009 and I am still mobile, although I walk like I'm drunk. I use my cane often, but I am mobile. I have PPMS and that means there isn't any 'approved' FDA treatments (drugs). I know how bleak things can seem.
I am on disability and I rarely go out of the house. I have one overarching goal. That is to get as fit as I can get and to get my weight under control (since I don't work, I have little chance of burning the calories I consume). I want to be here when the medical establishment finds a 'cure' for this MonSter. I believe it is within our reach. Good luck

[pnowsitall]

tell me about you also, about everyone that "views" this

Hey,

I am in the same boat, but haven't gotten so progressive.

I'm still early in the walking drunk scenario. I often get up from my chair, and lean on my side, as if I was falling down. It is so weird, as I never knew this is a possible disease before learning about MS. All the things that I felt have been forgotten, except from things going forward after my dx.

I was dx in Dec 2011, at 31. I had ON, as my very first flare or excacerbation, and haven't really had any other significant event. Never took steroids for it, and it went away completely, with 95% healing, in 3 weeks.

After starting Rebif in Jan 2011, I have had the following symptoms, feelings:
-fatigue( A lot, I don't get to do the things I used to do, like go to gym, play tennis, because the want is not there, I don't feel like doing it
-stabbing needles, like a cold needle, in my back, leg, that last for like 5 seconds.
-balance- i sometimes lean on my left or right side, as if I were drunk
-muscle twitching
-sun burn on my calf
-ants crawling on my face

There are so many other things I overly pay attention to. Not sure what to do with these things, only to do what I am told by Dr.s. Keep doing the MRI's, take care of yourself, set up follow up appts, take your DMD's, and just live life.

It's not the same because I think we are different emotionally and physically. What can we do to make family and friends understand? What can make them educated enough as to adjust to our lives? Especially significant others....let me know

Would love to hear from you guy's

[diguilio]

Response

pnowsitall

so the feeling in my calf is normal? i wake up in thre morning and i feel like my legs a like a rock.....is this normal?

[pnowsitall]

hey

Well, I haven't had that feeling yet, but there is one post here that a person felt like their left side was full of concrete, so that sounds similar.

All I got in my calf once was a burning feeling, really quick like 5 seconds, that felt like the indian sun burn.

What else have you felt? What was your first flare, or excacerbation like?

[diguilio]

response

Hi,

No this is not new flair up but new for me

[mrsbug]

Many meds

I was Dx'ed in 96. I started Avonex. Used it for about 10 years. Then my doc started me on Rebif. I was only one it for a bout 6 months and my liver counts started getting weird. I only have one kidney so we watching how my liver and kidney very closely. Then I went on Novantrone About the times then Tysabri came on the market. I did really well with it but then it was taken of the market so back on Copaxone. Tested positive for the JCV SO I stopped Tysabri and started Gilenya. I took 10 pills and started noticing problems with my eyes. Sure enough Macular Edema. So I had to stop the Gilenya. It took 11 months to reverse the effects of the macular edema on my eyes. but I finally got release by the eye specialist to go see my normal eye doctor. New lenses are ordered and and are on their way!!!

[pnowsitall]

mrs bug

Wow, that's a slew of drugs and medications. I'm actually on Rebif right now, and gotta tell you there must be something better. Not only do I hate the injections, but also the side effects like an hour later.

I haven't gotten elevated liver enzymes, but also no flares or exacerbations. I can't wait for bg12 to come out next year. I"m so sorry to hear about the macular edema. What did it feel like? I've only had ON in my right eye, which was excruciating!!

[azgraves]

Hi Diguilio and all others!

I have been diagnosed with RRMS for 3 yrs, although dealt with significant symptoms for over 10 yrs. I am 37yrs old. I managed to work full time up until the last couple of months. I just applied for SSDI 4 days ago. You know, this disease isn't called "MULTIPLE" Sclerosis for no reason!

That is my own personal phrase I use a lot with people when trying to explain it. Here are some of the symptoms Î have dealt with: my first significant symptom was when I was 25 and pregnant with my 3rd child....I was taking a shower, and just like always, a very hot shower, when I felt dizzy and weak, followed by passing out. Of course, at the time, I had no clue this was the, all too familiar, heat intolerance symptom of MS.

As time and disease progressed, many other symptoms arose, here are a few: severe weakness in the right side of my body, chronic pain only on the right side of my body, stroke-mimicking episodes, cognitive impairment, speech problems, fatigue, migraines, bladder incontinence, tingling in all exremities and in the back of my head, tremors....and the let could keep going!

Here's where I am now: I recently switched from Avonex to Aubagio, I give myself injections of Acthar because I am sterod resistant, I take 800mg of Gabapentin 3x day, I take Xanax as needed for the tremors, I am on Oxycontin and Hydrocodne for chronic pain (the pain I experience is mostly in my right leg and feels like a super strong person is squeezing it like wringing out a wet towel 24/7), I just recently was under home health physical therapy, I have to self-cath 4xday, when able to walk, I use a rollator (on good days, a cane), when going to be out a while, I have a power chair.

After saying all that, I must say that God is good to me. I continue to stay positive, I keep a good sense of humor and am competelt blessed to have a good support system....my husband, my 11yr old daughter, my 10yr old step son, my 16yr old son and my 18yr old son, and also a precious church family and choir that I am in that is continuely there for us!

[diguilio]

azgraves, I have never heard of Aubagio....whar is it and does that help you?

[azgraves]

Aubagio....for diguilio

Diguilio, Aubagio is a once daily pill to slow down progression that just got approved by the FDA a couple of months ago. Its generic name is Terflunomide. On the msg board, under medications and treatments, and under new treatments is a thread about aubagio. You can also look it up on Google. God searching.

[mrsbug]

Macular Adema

Wow, that's a slew of drugs and medications. I'm actually on Rebif right now, and gotta tell you there must be something better. Not only do I hate the injections, but also the side effects like an hour later.

I haven't gotten elevated liver enzymes, but also no flares or exacerbation. I can't wait for bg12 to come out next year. I"m so sorry to hear about the macular edema. What did it feel like? I've only had ON in my right eye, which was excruciating!!

It did not feel like anything. I did sense I was looking thru water. Kinda like when you spray windex on a window and try to focus on something on the other side. Yes it was/is a slew of meds. I am famous for the quote "death is not an option" My nuero speaks English but it is not his first language. We have been together for 18 years. He has told his wife what I say and she is impressed with my attitude. So is my husband. He does not understand how I keep smiling and going on. I have a lot to live for in my opinion. 2 kids and a wonderful husband.