Tips for those with TM and the other rare Neuroimmunologic Disorders: Patients Helping Patients

Barbara Sattler
bsattler@cox.net

As the years go by after receiving my TM diagnosis, I am learning, sometimes the hard way, to cope with a number of my medical problems.  I am sure many of you have also learned various ways of dealing with your medical issues, regardless of whether you have an ADEM, NMO, ON or TM diagnosis.  I have been frustrated in the past when my doctors have not advised me of a product that might have helped me with a medical issue or offered some other guidance.  I considered that it might be very helpful if we began to share some of the things we’ve learned for ourselves over the years through our experience.  I have asked Sandy to please include these tips in the TMA journals and newsletters.  As with all medical issues, it is extremely important to bear in mind that you should not try anything without first discussing it with your doctor.  Also, it is important to consider that what works for one person may not offer any positive benefit for another.  With those important considerations, I am going to offer a list of some things I’ve learned and some of the things that have worked for me. 

I always take someone with me to a doctor’s appointment.  I need to have another set of ears to remember what was said.  Often I will hear something that upsets me or relieves me and then miss something else that the doctor said.  After my appointment, I am able to review what I heard and what the other person heard from the doctor.

I bring a list of written questions with me to my appointments.  I don’t want to have to remember all of my issues at the spur of the moment and I like to keep my thoughts organized.  I also try to prioritize my issues on the list.

If I don’t understand what my doctor explained to me, I keep asking questions.  I certainly don’t consider myself to be stupid if I don’t understand.  I hold my doctors responsible to communicate with me in a way that I can understand.  If my doctor doesn’t treat me with respect or answer my questions, I am going to change doctors.

Heat is not good for my nerve pain.  I avoid going into a sauna, spa or even a hot bath. I, instead, use cold water.  I have found that cold ice packs or even packages of frozen vegetables can help to relieve my pain.

Some of my medications can cause dry mouth.  I have found a number of products on the market which really work to alleviate dry mouth.  I use dry mouth toothpaste and mouthwash which are very easy to find at your local drug store.  I use Biotene; there are others.

My primary care doctor has prescribed me Amitizia for my constipation.  This has been an excellent medication for me.  My neurologist had never heard of it.  I have tried many prescription and non-prescription remedies for constipation and this is the only thing that has worked for me.

I have learned not to just “tough it out” when it comes to pain.  I have also found that pain medicine works best for me when taken as prescribed.  For example, if I am supposed to take it every 6 hours, I don’t try to make it to 7 hours.   If I wait for 7 hours and I am in pain, it is going to take longer for the medicine to kick in.  I take the medication before I hurt.

I am on long-term pain medication 24 hours a day.  I hope you are not.  If you are, I have found that taking my morning dose an hour before I get up works really well.  I set my alarm for an hour before rising, take the pill, and go back to sleep.  If I wait to take the medication when I get up, I don’t feel very good for the first half hour of my day.

Don’t be afraid to try remedies, such as hypnotism, acupuncture, or meditation.  During a very painful time, self-hypnosis was very helpful for me.  Do be sure to use a credible professional.   

If you would like to share your experiences, please send them to me via email and I will compile the suggestions for the TMA publications.  Thank you for your willingness to share your suggestions with others.