Yay!! Today is dds first full day off the Gabapentin. She has actually done really well. Pain is no more or less. She is having hard time sleeping so I may have her take a Melatonin to help her tonight.

Final evaluation at Chiropractor tomorrow. Very interested to see what muscle tests reveal. Will update with any news.

Side rant on the Gabapentin - I am so angry that her PCP put her on this dangerous medication and did not even bother to go over the dangers with me!!! Ugh - just glad to get her free of it finally.

Thowell,

Glad to hear that she is off the Gaba and doing okay.

So what is the latest regarding the Chiropractors examination??

Bryanna

Her visit last week was the first part of his evaluation. Today should be the other half of evaluation. He will have her perform several different test to see how her muscles are working or not working. He seems very thorough but would not tell me what he thought might be wrong until he finished his evaluation. He has also had her track her symptoms and diet.

Wednesday morning is her first appointment with the IFM Physician. I am very hopeful about this!!

Great!

I find magnesium very useful for pain, spasms, cramping.

Many find Morton's Epsom Lotion helpful. (magnesium sulfate)
I also use 100 % pure magnesium chloride, by Life-Flo.

Life-Flow magnesium chloride products: http://www.life-flo.com/magnesium.html (These products can be found at lower prices with an internet search. This is simply the product line.)

Magnesium will also likely help her to relax and to sleep.
If trying topical magnesium, it may be helpful to massage this into her shoulders, as well as her neck?

In fact, I use a small amount on the back of my neck to help me to sleep at night.

mrsD has a magnesium thread: http://neurotalk.psychcentral.com/thread1138.html

I am thrilled your daughter is off of gabapentin (since it was not helping) and am thrilled you are feeling hopeful!

Much Love to you and to your daughter.

DejaVu

Thowell,

This all sounds positive! I am hopeful the DC and the FM doctor will work together to help your daughter become well again. I'm sure there will be more testing with the FM doctor but this is the journey needed to get to the root cause of the problem. I'm sure they will recommend some changes in her diet and lifestyle....which can be a bit daunting in the beginning but so well worth it in the long run!

Feeling excited for you both today Keep us posted!
Bryanna

Thowell,

Just checking in to see how your daughter is doing.
When you get a chance, please give us an update.
Fingers crossed you will have good news!!

Bryanna

Have her checked for Chiari Malformation and Syringomyelia ... symptoms sounds very familiar .....

Just wanted to check in and record our progress or should I say lack of!!!

Saw Orthopedics which was referred by Pediatrician, what a waste of time!! Dr. literally walked in and without even looking at dd12 decided it wasn't an Orthopedic issue!!! Ugh! We have been going round and round with Pediatrician since her insurance requires everything to go through her.

We are seeing a new Geneticist. The IFM doctor we saw was only able to go forward if we were able to pay around $3500 for testing that her insurance would not cover and she was not willing to work with our Pediatrician. So Dr. Shah, the Geneticist, is willing to send everything through Pediatrician so insurance will cover very expensive testing. So, now back to fighting with Pediatrician. She made a decision over a year ago that she thought this was all in dd12s mind and that nothing was medically wrong with her so getting her to do any testing or referrals is like pulling teeth!!

She has just agreed to write referral to Pain Management so waiting to hear from them now. We go in to see Pediatrician tomorrow afternoon and try to convince her to order genetic testing.

Dd12's symptoms are worse if anything. She has had a few weeks in the last several months where her pain was more of a 4-5 than the normal 10 for her. The last 2 weeks has been really bad. She is very dizzy, light-headed, fatigued, extreme pain in legs, ankles, and wrists. She has dropped 8-9 pounds in last 30 days and barely gets out of bed most days. Her heart rate is high, normally around 135-140 and the headaches and neck-shoulder pain are non stop.

I am getting very worn down and most days bounce from anger to sadness when see cant see me! I just want her to feel better. I just want to know what is causing this and that someone is trying to make her feel better. Instead, we get shuffled from one doctor to the next and get no closer to answers. The few doctors that think they can help require testing that is crazy expensive and we are left to fight with insurance!!!!!!!!!!!!!!!!!!!! UGH!!!!

Ok sorry for the rant just needed to get it off my chest.