Hi,
I thought, I'd make a new thread, cause I'm sure others have had this same thing happen to them. One time years ago when many of us were on Brain Talk, we took an informal survey, and almost all of us had some kind of back injury in our past. It was really something.
I was in a car accident. I was driving a small Nissan Sentra, and a person driving in a SUV smashed into be backside. I was stopped, waiting for a car infront of me to make a left hand turn, and the SUV, never seen either of us, and at 55 miles per hour he blasted me.
I crushed L5,S1, and had a couple back surgery, ending in a spinal fusion. It left me with nerve damage. I have bi-lateral nerve pain all the time. It isn't too bad, but when it gets aggravated, and inflamed, it's very painful. It starts from my hips, all the way down to my feet.
And from then on, I've had problems. And infact, is the reason why I waited so long to say something. I just thought that my nerve damage was getting worse.
The more I'd do in rehab, the weaker I'd get. I was in water therapy, and it just felt like I was getting worse, instead of better.
But then, I'd go to pick up a coffee cup, and spill my coffee, it felt like I was lifting led. When I went to swallow, it was like my body forgot how to do it. And it was the not swallowing that finally made me speak up, and get further checked out.
A tramatic trauma to the body, can bring out MG, and I do believe this helped it come out, along with a staff infection I had after a surgery.
It is amazing how things can change us forever.
I wish is wasn't so.
Love Lizzie

Hi Lizzie,

I've heard a similar theory about surgery or anaethestic but not back injury (although the surgery part could link them). My back is one of the only things on my body that seems to do what it's meant to!! My MG emerged in a big way after I had surgery to remove my wisdom teeth. I was under general anaesthetic and had an "anaesthetic-induced" crisis - one of the scariest moments of my life, but at lesat I was in the right place. I've since had laproscopic surgery for my endometriosis and my gall-bladder removed with no complications.

Although I say that my MG really started then, I have had double vision since birth (Dwyane's syndrome or a 6th nerve palsy) and looking back at photos my eyes have been a bit wonky on and off since high school. So who knows what would happened with or without the surgery.

I'm interested to see if others have thoughts on where/when their MG emerged.

On a positive (albeit unrelated) note.... I went for a Dexa (bone density) scan on Tuesday and my spine and hip are both quite healthy. Great news considering I've been on high dose steroids for over a year now and I've never really been a milk drinker. I was so relieved to have the good news.

Hope everyone is well!
~Kathy

Kathy, I have to have my bone density test in June. After almost 5 years on Prednisone, mine have been coming back normal too, and each and every time, I do a sigh of relief..
If one is given the wrong anesthesia during surgery, it can throw an MG'er into a crisis. Same with being careful not to have the dentist use Lidocaine (lidocaine is the new Novacaine, actually they haven't used novacaine in years, but still call it that cause that's what people know..kind of like Kleenex)
Anyways, a person with MG should ask for "Carbocaine" when at the dentist.
I believe, I've had a certain level of MG my whole life. I was a very active child, but I remember feeling my muscles getting tired faster than others, and my ankles use to always give out during gymnastics. And during the birth of my youngest daughter, my body, just wouldn't push any longer, The muscles just stopped. To the point, they had to go in and hand take out the placenta (sp?), cause I couldn't push it out.
They sent it out to get biopsey cause they didn't understand what happened. They could tell, my muscles just stopped.
But the Accident, and spinal injury seemed to really bring it out in full force.
I'm always curious as to what others believe was their turning point. Very interesting.
Love Lizzie

Lizzie, I've been wanting to say how sorry I am for how much you are going through. I know you have a strong faith and can handle it but, damn! That's a lot for any one person to handle.

I don't really know what may have brought on my MG (or CMS) since I have had one or the other since birth. My B12 deficiency in 1997-99 really amped up my MG, which is what sent me to neurologists.

I had a car accident in 1986, where a woman took an illegal left turn in front of me. Yeah, she was drunk too. My neck got pretty messed up from that. That's the only spinal problem I have from trauma. MG in general, because of the weak muscles, makes the spine very unhappy though. It's a vicious circle of weakness, spine going out of alignment, more weakness and pain, etc.

I think anything that "upsets" the immune system can bring on autoimmune problems. Even ones as "simple" as allergies or asthma.

Annie

I was also in a car accident years ago that damaged both my neck and back. I have 2 discs that are at a funny angle due to the wreck and have constant headaches......

Wow! I wonder if there is something to this?

Big hugs!
Erin

Thanks for starting the thread, Lizzie.

I THINK my MG may have ties to a severe illness I had when I was 18. It itself was'nt MG but I have a hard time believing that somehow that didn't have something to do with my problems now. Most significant reason is that my blood count was all screwed up. 3 x the white cells and almost no red cells being made.

They never dx'd me then, but let me out of my 16 day hospital stay with the dx "fever of unexplained origin". I was mostly fine once I got recovered from that, but what a flip flop on my metabolism. Prior to that I was such a high energy person that I was accused of being a speed freak (1970's term - told ya'll I'm OLD!), but I didn't do drugs.

Afterward, I still was fairly energetic, but not the same. It was more like nervous energy in bursts.

Then in 1991 I was rammed into while stopped at a light with no where to go by a guy doing about 55 that had fallen asleep (5:30 at night). Unfortunately I sat and watched him coming in my rear view mirror and tensed up. My surgeon said my neck was still like hamburger 2 years after the accident when I had my 1st surgery, and I have since had 2 more on different levels.

Swallowing issues surfaced then, but I was on muscle relaxers, pain meds, Naproxyn so I don't remember a lot and don't know how much else could be attributed to all the sleepy eyes drugs they had me on. By 1995 is was starting to notice a reduction in my stamina & strength. 12/1/96 I went to the floor with no muscle response at all for a few minutes, then minimal. I had my prelim dx of MG early 1997, but I've posted the fun I went through at that time. It was removed and the 2nd surgery to my neck happened. My "for reals" dx didn't happen until my next major bout in 2003.

You do have to wonder about the spinal trauma not just kicking this stuff off, but maybe whacking out the system. For me though I think it was the kick off, with the teen illness being the real beginning.

P.S. - Why do I keep having stuff that can't be diagnosed? The 18 yr old thing, then so much trouble with the MG dx, now (and '97, '03) the secondary issue I have. Shoot - even my white blind spot in my R eye isn't dx'd but has to be watched! I really HATE this stuff!

OK, that was my rant for the day - sorry. I seem to be needing those more and more often the longer this goes again!

Loves to you all! I'm so glad you're all here.

Ok - here goes:

A few years ago we went to Belize - we came early (thank God) due to a family emergency and the morning after we returned, my hubby and I both came down with some really weird (and still totally unknown) illness - I'm talking 104 fevers and headaches so bad that pain meds wouldn't even touch - it was scary!

Then I became really, really ill and when I was finally dx'ed had thousands of little "spots" on my lungs, along with SEVERE anemia - needed 2 units of whole blood(unknown origin), heart problem, and the like - it was CRAZY! I would wake up with a nurse standing over my in ICU shaking me (blood pressure was waaaaaaaaaaay low) or a dr. telling me a "may" need a pacemaker..........


But before all of that - during my accident time I DID notice that I felt an electrical "charge" in my feet and legs and lots of fatigue - and I was only 20 @ the time........It was strange and I have no idea what caused it, but am experiencing it again now...........AUGH!!!!!!

What is going on with us? Seriously - what is it? I even have abnormal saliva - very, very acidic - needed 12 shots to numb my mouth last time I had a root canal - and worse, my body metabloizes it super fast, so the pain comes back! Now I think I may have sciatica (sp) - shooting pain down my back and left foot - can't wait to talk to my doc on Monday.........I have lots of questions for him - I have gone so far as to ask my folks if I was conceived anywhere near agent orange - -lol!

I just cannot figure this junk out!

Hope everyone else is having a better day!
Erin

Went to the hosp today to have my PICC line flushed and was really really weak - was afraid I'd fall before I got inside so it has been a BAD day!

Sorry for the rant!

Wow, Erin, that sounds awful! They never found out what it could have been?
Annie, I know, sometimes, I look heaven-ward, and ask, Lord, seriously, another one?
I've gotten so tired of doctors ordering labs to check one thing, and they find another.
I have told my doctors before, Okay, I'll let you test for this, but Please, if you find anything else, just quietly treat it, and don't tell me. Other wise, my mental state is really goind to haywire. At times, I do break down and cry, but I think it's good to have those moments, just to let it out, and then get on with living life to the fullest, at least as much as I can.
You'll have to tell of your experience with the B12 problems you've had. It's very informative, and will help so many, and it can go hand in hand with MG. At least according to my Neuro it can.

You know everyone, I really think there is something to these injuries, or medical issues we've had that helped in bringing on MG. I really do.
Especially with the spinal cord. When one thinks of all that the spinal cord does, I have no problem believing a damaged one can bring it out.
I just wish there were a cure.
I really relate to the having things they can never find the answer too, or figure out what it is. That's how I felt for the longest time, to the point where I didn't want to even speak up about anything new that came up. Just didn't want to go through all the horrible tests to be told, "everything" is normal. And inside, I'm screaming NOooooooo, It's Not Normal, Something is Wrong!
Love Lizzie