before i was diagnosed with MG i went to 4 diffrent doctors for my back it was awful...ever sence i started the meds for MG the only time my back hurts is the week before my period..And let me tell ya it HURTS..Everything hurts no matter how much mestinon.. good luck
Dawn

My daughter has scolosis in her spine due to her MG (or, more specifically, because she was still growing when she got MG). Her curvature was about 19 degrees a yr ago and she goes back next month. If it's worsened she may need surgery so if you could please, please post updates on your back surgery journey, I would greatly appreciate it. Thanks. Sarah

I met with my neuro yesterday and he really does NOT want to put me through surgery but he said that it is up to the neurosurgen on what she decides!!

He also did nnot want to start and IVIG's due to the fact that, YES I have mild to moderate MG exacerbations but he thinks they are from me taking pain meds and dealing with my back and would like to concentrate on my back and see if once they get that better than maybe my MG will also get better!! I hope he's right!!!!
He did start me on Neurontin 300mg 3 times a day and increase it slowly over the next weeks. I am also on Vicodin 3 times a day, PLUS all my other meds....UGH

I will be seeing the surgeon on the 23rd and will keep you updated on what they recommend!!!

Have any of you taken neurontin, or is your daughter on it Sarah100???? How is she and how old is she, if you don't mind me asking??

Thanks everyone,
Kim

My daughter will be 16 in a week and she has not been on the med you mention. What is it for? She is doing ok (well some days, poorly on others- the MG rollercoaster.) Right now we are focused on her gaining some weight (a problem since she was diagnosed). She's always had IBS and the meds play havoc with her system. She is also managing to stay in public high school (with some absences and accommodations). I don't know how she does it. Thanks for keeping me posted. Sarah

hi dawn how long have been diagnosed with mg what are the sypmtoms you me i was diagnosed with mg last but after taking those med it was not doing good i this is mg> worsening through months and years, are we waiting when god gonna take us is there no other way to gain some strength>

I've been on Neurontin for post herpetic neuralgia and it worked wonders for me with no side effects. Some people get dizzy at first, but it will go away once your body gets used to it. I tend to believe that the more you need a med, the less you will experience side effects, pain meds that is. I have 3 bulging discs and 2 that have ruptured. I also have degenerative disc and spinal stenosis. Just a little bit of back problems, and as much as I can't stand the prednisone, it has helped the pain in my back. It was a yoga instructor that finally got me to complain enough for the MRI's. I couldn't sit in one of the positions and she knew immediately what was wrong.

Do you think the pain is caused by the Mg because I have such bad low back pain ever know to man, like someone is behind me putting presure on my hips and my spine, I dont even know how I make it throught the day

reddutchgirl, how much Neurontin are you on? I tried taking them and they made me feel crappy, so my neuro has me taking just one 300mg before bed! I couldn't stand the feeling of sleepiness, dizziness, weakness and etc. when I took in the morning. Are you in need of having surgery or did you opt out of it? I have pretty much the same thing as you, mine starts at L3 through S1.

To you others that have asked, NO my back is NOT from my Mg, I had MRI done and it showed the buldging, disc ruptures, disc degeneration and etc. so it is just another problem on top of my MG, but with my back problems it makes my MG harder to control.

Thanks for your replies......And I will continue to update as I go along this road!!

Kim

I too have back pain, I personally think it is due to the MG. The whole spinal system carries multiple muscles that support our whole body weight. I notice when I am weaker my lower back is in excruciating pain. If a "normal" person is toned and fit, their supporting muscles will keep their back aligned. If our muscles don't receive the messages they will not contract and therefore allow the back out of alignment putting pressure on the discs and eventually causing severe damage and chronic pain. This is only a theory based on my personal experience and none of my doctors have jumped on board though they all say it is possible. I guess my point Kimmer, is I have spoken with a few MG friends locally who had back surgery only to have their problems come right back because they couldn't fix those muscles. I hope this makes sense, I am a little foggy myself this morning.
Jen

Well I met with my neurosurgeon yesterday and I have NO good news to report!! I have no choice but to have surgery, but they can NOT do the surgery that they need to do because I am only 35 but have the spine of an 80 yr old. I have severe degeneration and they can not put screws in because my spine would break into pieces!!! So they are going to start by removing the buldges and see if that will relieve some pressure on my nerves. At some point they will have to put in 3 NEW disc's when it comes to the point that I can no longer move.
Right now I am awaiting surgery due to the fact that it flooding around here and the hospitals will take no patients because they may need to be evacuated!! They did say that there is a possibility of me having a crisis and I am Scared to death!!!!!
Well, my birthday is on the 26th so maybe that will be my present, having surgery!!!
I am NOT allowed to do anything or lift anything heavier than a gallon of milk!!! Yea......this sucks!!!!

Oh, and I have also developed scoliosis, the right side has a BIg curve in it......WOW is all I can say when I seen the X-rays and MRI's!!

Kim

I am so so sorry Kimmer, I didn't realize your spine was degenerating. I will keep you in my thoughts and prayers for a successful surgery and speedy recovery.
Jen

Ditto JenL's comments- just so sorry. Will pray for strength for you to keep moving forward. Sarah

Hey Kimmer, sorry it took me so long to answer you, I just got back from Duke-long trip. I was on 500 mg 2/day with food and had no reactions at all. Didn't make me sleepy, dizzy, etc. I'm not on it now because the PHN is not that bad anymore. I'm also very sorry for your news. I won't have surgery since I have lupus also. Open me up and it allows the inflammation to set in, not happening. I'm having luck with acupuncture and I hate to say this, but I think the high dose of prednisone is also helping with the back pain. They think my problems (disc) are from a really bad car accident that I had years ago, I actually broke the seat belt in two. The police officer said he had never seen such an impact. The guy hit me going 82 mph. He was in a van and I was in a Nissan pick up. I have been seeing a chiropractor for years also and he does help, but you have to get a good one. I wish you the very best of luck and hope that you feel better soon.

Oh, I'm L3 to S1 also, now that's a little weird. I couldn't remember the numbers, so I looked up my copy. They mention something about facet arthropathy, have no clue what that is.

Facet arthropathy is degenerative arthritis affecting the facet joints in the spine.....to which I have that also!! Wow, are you my twin????

I will be starting higher doses of prednisone tomorrow morning. I ended up going in for a pain shot today also. I am soooo tired of Pain!! How much prednisone are you on a day?
I have done the Chiro treatment for 10 years now, and now I'm past go and don't have a choice. All I do is pray for the best outcome so I can move on and try to get back to normal for awile *( whatever normal is for a Myasthenic anyway )

Thanks,
Kim