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About Tina
Expertise
I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.
Experience
13 year cancer survivor, Lymphland Support group owner, Owner of Lymphland.com website, writer for Butterfly Gazette, forums coordinator for ELymphNotes online lymphedema magazine, patient and advocate for 10 years, Yahoo answers advanced level answerer.
Organizations
Lymphland Support Group Owner, Lymphland.com website owner, National Lymphedema Network member, American Society of Lymphology member, ELymphNotes forums coordinator and writer, member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't
Education/Credentials
college graduate, volunteer in pet loss grief counselling.
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You are here: Experts > Health/Fitness > Rare/Orphan Diseases > Rare Diseases > Acute Transverse Myelitis
Expert: Tina
Date: 3/24/2008
Subject: Acute Transverse Myelitis
Question
Hi - my husband was stricken with Transverse Myelitis in July 2007. Even getting the diagnosis was an unbeliveable experience, but basically, he had an intrathecal pain pump installed in March 07 and his symptoms became worse and worse. His left leg began to go numb, he complained of general malise and pain. Eventually, he was unable to urinate and that began a seris of unbelieably painful attacks resulting in first the total numbness of his left leg, then a few days later his right, then another burning searing pain episode that left him paralyzed up to his sternum. He spent 10 weeks in a rehab facility and since then, the "icy burning" pain is constant, he has broken his left foot after a fall, blood clots in his lungs and is plagued with blister like sores that eventually burst and take weeks to heal.
We have been to multiple doctors, hospitals and PT. I have read the Transverse Myelitis Association newsletters, but we feel so completely alone. We are both in our mid fifties and he is beyond discouraged. I understand this is a rare condition, but there must be help somewhere. Someone who cares enough to do the most up to date research and treatment. We are desperate and I'm becoming concerned that he will just give up. He spends his days in bed, waiting for me to come home from work. I spend my nights on the couch listening for him and to try and make him as comfortable as possible.
Answer
Hi Stephanie,
Your husband has had a rough time, it's very hard not only physically but emotionally for him as well. He probably feels stuck with this condition not knowing what kind of recovery he will have from it. Alot of patients do experience some form of recovery. The best sources of the up to the minute information are the foundations and the support groups.
Transverse Myelitis Association
1787 Sutter Parkway
Powell, OH 43065-8806
USA
Tel: 6147661806
Email: ssiegel@myelitis.org
Internet: http://www.myelitis.org
This is a list of support resources: http://www.myelitis.org/support.htm
This is the best place for information along with the support groups, the most personal support group is: http://health.groups.yahoo.com/group/transversemyelitissupport/
If your hubby cannot sit at a computer perhaps a laptop would work? You can pick up some cheap ones on ebay and some of the auctions, if he cannot sit and has to lay, that could be an option.
Some of the support groups also sponsor chats, real time online chats to talk to other members and share. I know my group for lymphedema does this.
You have to motivate him, tell him there are others out there like him that need to talk to someone and they can help each other. I'll tell you a little personal story here.
I know when I first was diagnosed with lymphedema, I didn't want to believe it. I worked until I developed other health conditions that go hand in hand with it until I wound up on disability which was depressing. My friend Kat was my motivator. She said I was given this for a reason beyond my knowledge, because I was a strong person and I could handle not only the condition, but I was needed to help others because at the time lymphedema was a rare disorder. The lymphedema patients have come a long way in the last 11 years since I was diagnosed.
Maybe this is something your hubby can do as well. Join a support group or even create his own. Meet others, band together and help not only each other but the other patients out there. When you help others, your health improves, you feel better about your life.
I have made some of the best friends I ever had in my life in my support group. I learned on my good days how to build a website and it's become a good experience for me. I think it could be for him too once he gets more involved and realizes he's not alone.
Tina
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