Totally confused and scared!
 

So i have been having major issues with my back recently. Went to see my neuro to test for neuropathy - negative. He did say that i have a few bulging discs and sciatica, but it shouldn't be causing this much pain.

I trust my neuro completely, but want to be pain free, so i went to see a "pain specialist" today to check out my back. I did tell him - the ps) that i have had several mri's, as well as extensive testing from dr i - well, he (the ps) says that i have extensive nerve damage on my left side and need cortisone shots to help alleviate the pain.

Given the amt of pred i'm on, i decided to call dr i and let him know that i have the procedure scheduled for friday - he called back and told me that he does not trust this dr @ all and doesn't want me to have it done. I reiterated that i am in constant pain, to which he responded that he thinks it is ob/gyn related, but was really upset @ the prospect of me getting shots in my back. He told me i am @ the max of pred for now and thinks this guy is a quack.......

Now i am in a quandry. I need to be pain free on the days when i feel good enough to get out of bed, i cannot just lie around and take pain meds.

Any suggestions? Again, i love my neuro! He truly saved my life! He has been there every step of the way for me, but i really don't want to live a life being in pain. :(

it seems like since i have been dx'd with mg everything has just gone downhill - my bp, heart, everything. I am scared, but i do know things are going to work out.

Any advice would be appreciated!

Big hugs!
Erin

ps i am not yelling - my old comp died and i am still trying to get the new one figured out - i typed this out 3 times and it disappeared into cyberspace.

Erin, When my MG is bad, my back gets in so much pain that I can't walk. The pain is muscular, not nerve. When it's that bad, I go to physical therapy. It can initially hurt, because they have to "dig" into the tight muscles, but it gets so much better. I now know how to do it myself with rest and a very good massager.

Feel around on your back and hips. Do you have any areas that are really tender? Maybe ask someone else to push around those areas for you. If you have spots like that, it is probably the muscles in spasm.

It's also possible that you have myopathy from the steroids. Have you asked your neuro about that?

You are on Pred. Steroid injections do not make sense to me either. Most doctors have backed off on doing those injections. PT often does more and is less invasive.

If it is possible it is OB/GYN related, which I think is just a reflection a man's ignorance of those issues, then a trip to the gynecologist would be in order. Pelvic inflammatory disease, endometeriosis and fallopian tube problems (and ovarian cancer) can cause back pain.

Personally, I would trust your neuro. He has not let you down yet. And before you do any more drugs, you need to figure out FOR SURE what is the cause of the back pain. Seriously, I get really tired of doctors going straight for the drugs to fix things without figuring out WHY first.

Hang in there. I know back pain is no picnic. There are things that the PT guys can tell you that are invaluable. My neuro has physical therapists in his offices that I go to. I don't know what I'd do without them.

Annie

Erin,
I agree with Annie. I have been having severe back pain and have had to go to PT to get relief. They found that the pain was spasms and they only relief came from PT. I was almost were I couldn't walk or stand up straight, but the PT helped. I am fixing to have to make a return visit, as the spasms have returned in a bad way. Trust your neuro and don't take chances with the PS. A visit to an OB/Gyn could help also. Remember, you are in my prayers and let me know how things go!
Big Huge Hugs to You,
Simon

Hi Erin,

I also agree that the shots seem pointless since you're already on steroids. Also, those shots can be dangerous. The daughter of a woman I know had those shots done in her back and she ended up with this disorder, I can't remember the name of it, but it's a dystrophy and is extremely excruciating with little treatment...

I also get a lot of back pain due to chest weakness...I have stenosis in my lower spine as well...The pain comes and goes, though...Right now, I'm okay...

I hope that something can be worked out...Is it possible to have massage/chiropractic therapy for something like this?

Nicky

Erin,

Stick with your neuro. He is the one who has seen you through so far and you like and trust him. Follow his recommendation and stay away from the 'quick fix' promise of pain relief through spinal shots.

I would strongly recommend the PT / massage route ASAP. It's not chemical, non-invasive - and worth a try before allowing anyone near your spine with a needle!

Good luck - and keep us posted.
Sue

Hey Erin,

I agree with everyone on this. Trust your neuro and skip the shots. PT and or massage sounds like the best way to go. A visit with your GYN to rule out another cause is a good idea too. I hope you get some relief soon. Take care.;)

Hugs,
Pat

Erin,

I too agree with everyone. I worked in pain management as a licensed professional for many years. Any doctor that would agree to give you injections considering the amount of prednisone your are on, I would definitely question. I believe your neuro is correct. Also I understand the need to be out of constant pain. That is awful. I am sorry you are in so much pain. Again, I agree with everyone about trying PT, Massage, and since your discs are bulging and not herniated, acpuncture may work very well for you. This seems a better route for now. I hope you are feeling better. I can relate to everything going sour once we got that MG diagnosis. Hang in there and I will be thinking of you. It does sound like your neuro has your best interest at heart. Dorothy

Erin
Be very careful of being over medicated ! Drugs have a way of doing weird things when combined, I have been there, & almost died at one point. It took a long time for another doctor to clean my body out, & start over. There were a lot of choice words between doctors over that ! That was back in 2002, I am very careful to this day to question, amount, & nessesity !
Even the steroids , at high doses for long term, can cause steroid myopathy, which can cause weakness, a side effect !
Be careful,
Mary

Back Pain
 

I just got out of the ICU for the past week. As you know they keep you very tethered to the bed with all the wires you are connected to. After I got out my back hurt like crazy. I really believe that it is partly due to being bed bound. You mentioned that you are too weak to get out of bed often. So even though I am short of breath, I have been taking short, slow walks around the block. It really seems to help loosen up my back and get the blood moving again. Remember - a body in motion stays in motion - a body in the ICU is TOAST. :-)

Erin, Ireally am saddened to hear that you are saddened and confused. That is 2 words I have found common since being diagnosed with MG about a year age. As others have said, heed the advice of your Neuro. Like you, I trust my Neuro 100%. He seems to be the only Dr. I have seen that somewhat understands this disease.
My prayers and thoughts are with you as you have been a "Rock" for me and helped me so much with your thoughts and understanding. Just remember, God has a plan for us all and put your trust in him. He will work things out.