Hi Bill. You are in the right place and have tons of support. For neuropathic pain I take a combination of neuropathic drugs including 600 mg lyrica, 120 cymbalta and 50 of amitriptyline. I also use colozapam as needed for extreme spasms or muscle pain.  I used to take a larger array of drugs (oxycontin, bachlophen, Valium, ect..) but after a several month trial and error period under strict doctor supervision, I found what was right for me and allowed me to live with the pain. 

As a little background,  I was diagnosed in feb of 2009 after six months in and out of the hospital (12 weeks all together)  due to six attacks of transverse myelitis. It started in my cervical spine and with every attack would move down the cord.  I was
left with a lesion that spanned from c2 all the way to t12. After about 50,000 mg of solumendrol and two rounds of plasmapheresis, I was put on rituxin. Once that was stable, I then had to to relearn to write, to walk and realized quickly that I was going to have to create a whole new lifestyle to have a chance at really being able to live and not just survive with this disease.  I am blessed that the rituxin  has kept me in remission and am lucky to have a guardian angle that has looked over me during recovery because my spine has regenerated amazingly and the only active lesion I showed as of last month is at T8. I thank my lucky starts every day for the chance I have been given. 

In addition to western medicine and medication, I have found that diet makes a huge difference in my level of pain and spasms. I stay away from the night shade foods. These include potatoes, tomatoes, peppers, eggplant and tobacco.
This group of foods are naturally inflammatory in the body and can exacerbate an already inflammatory condition. I found that for me potatoes are the worst. I also smoke and need to quit and just have not been able to tackle that just yet, but I found a huge relief in limiting foods that are inflammatory. I have also stopped eating processed foods. I found that they make my fatigue very severe. 

 I also know how important physical therapy and exercise are to recovering from and living with NMO. I have worked diligently with a great physical therapist to get my muscles to work correctly again. Basically when you have a lesion in the spine, the nerves can no longer send signals correctly, which is why we experience the spasms, pins/needles and pain. For me, I had to reteach all those muscles. It was really hard and gave a whole new meaning to no pain no gain. Its a delicate balance between pushing yourself hard enough
and then again not too hard or the pain was unbearable. I can say with complete conviction that this work played a huge part in my condition now! I am actually able to water ski , snow ski and ice skate again. I also started ballroom dance lessons recently. It did not come back easy but it came back.  

Acupuncture has also been an amazing tool during my recovery and now life. You must be sure to find someone accredited, but once you do, the relief speaks for itself. For me, I believe this will be something I will incorporate throughout life as a means to keep balances. More recently iI have started meditation. Through practice, I have found that I can separate myself form the physical pain. I also meditate to help align all the energy centers in my body.

I am an inquisitive and open minded individual and I continue to look for and seek new methods to help me find and maintain an
over all wellness that flows through my mind, body and spirit. You will find that stress management is key to living with and managing NMO. I know it seems hard and  SO SCARY at first, but please know that there is hope and  huge scientific strides every day. I am actually currently using all methods I listed above in hopes that I will be able to live without the daily neuropathic medications. I have decreased my cymbalta in half in the past couple weeks and its going really well. I am very encouraged! 

The next few sentences are littel things that I try to remember as i regain control of my life: 

1. remember to celebrate little victories! No matter how small. It will help you feel the hope! 

2. try not to get stuck in being what you were "before" and realize that life is always changing and you will never be exactly as you were in one moment in time. 

3.
 Create a support system. When you are afraid and down, come here and get information and support. Its very intense and we all need to vent! Make sure you have a a positive voice in place to help you through.  

2. Dont be embarrassed about having to do things differently than before. Know that you deserve to find as much comfort as possible in any situation. For example I cant control me heat any longer. For the longest time I tried to use programs or pices of paper to fan myself. Then one day I asked myself why I was so emabarrassed of this fact? From that day forward I started to carry a beautiful bright yello fan from Italy to carry with me! Now if I am hot I pull out my beautiful fan and proudly cool myslf. 

4. Listen to your body!!!!!!!!!!! 

I am so sorry that you have to live with this disease. It is hard but there is HOPE!!!!!! ALWAYS HOPE!!! 

Healing
and kind thoughts to you. 

Rachel Tracy Sheaffer 

---

From: "wongjl@aol.com" <wongjl@aol.com>
To: devics-spectrum@guthyjacksonfoundation.org
Sent: Fri, April 22, 2011 2:10:30 AM
Subject: Re: [Devics-spectrum] NEW TO NMO

Bill,  sorry to hear that u were recently dx with NMO,  however u have found the right people to support u. Yes, I think u will notice notice that many if us suffer from spasms and pain. I had leg and arm spasms that r now controlled by meds, I also suffer from severe burning sensations
down my leg that are mostly controlled by meds.  Good luck and glad that u found this site.

Mahalo and God bless

Jan



tovegrigsby@hotmail.com wrote:

>Resently diagnosed with NMO.  Does anybody else suffer from sever leg spasms and pain?  These come numerous times during the day and night.  Interested in how other people deals with their NMO and the pains.  It all started when I lost total sight in one eye, but now I can see shapes and shadows.
>Bill
>
>_______________________________________________
>Spectrum is the new home of Devic's Support
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_______________________________________________
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View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

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