Which advice would you give to someone who has just been diagnosed with Arachnoiditis?

See some advice from people with experience in Arachnoiditis to people who have just been diagnosed with Arachnoiditis

There is ALWAYS HOPE! There are new treatment options available now, and there is more research being done on this disease. One day I pray there will be a cure, but until then we must keep education, learning, and sharing our knowledge to help others.

Posted May 9, 2019 by ASAP Arachnoiditis society for awareness and Prevention

No more invasive surgical procedures i.e. Spinal cord stimulater, pain pumps, epidurals.
Pain management I've ketamine and water therapys are good as well as medical marijuana and kratom with lots of rest and a good support system as well as support groups

Posted Apr 5, 2017 by Josh 2600

EDUCATE YOURSELF. Learn as much as you can about Arachnoiditis, Adhesive Arachnoiditis, its causes, progression, and associated conditions.

BE A STRONG ADVOCATE FOR YOURSELF. Keep track of your symptoms and progression. Educate your medical professionals and those around you. Many medical professionals will need it. And you'll need to stand up for yourself.

SPREAD THE WORD. Let others know about Arachnoiditis, what causes it, and how they can make sure they don't get it.

Posted Apr 7, 2017 by Barbara 1000

Although it is devastating news, It is not the end of the world. There are lots of people and resources to help you cope. Become your own personal health ambassador by doing research and implementing the things you learn from others. Watch your diet, take supplements that reduce inflammation, get a good pain management doctor, take care of your back, go to all efforts not to fall down, and live your life by doing the things you enjoy.

Posted Apr 11, 2017 by Kelly 5450

Fi d a good support group. A good provider

Posted May 18, 2019 by nancy 2500

Processing the diagnosis, find a great medical team, research the condition & network with others that have this condition, find a counsellor to talk things out if needed & try to educate your family and friends

I don’t know what I would do differently .. it happened & I did what I needed too

Posted Jan 5, 2020 by Jcrandall72 2500

Make sure your doctor knows how to treat arachnoiditis because some don’t. You will have flares. If your having a good day reserve your pills but don’t not take them. Maybe just take one less. Stretch I can not stress this enough stretching is your friend. Find a support group online. And don’t be afraid to find a psychiatrist and a psychologist that treat chronic pain.

Posted Jan 5, 2020 by Deerut1963 2400

EDUCATE YOURSELF. Learn as much as you can about Arachnoiditis, Adhesive Arachnoiditis, its causes, progression, and associated conditions.

BE A STRONG ADVOCATE FOR YOURSELF. Keep track of your symptoms and progression. Educate your medical professionals and those around you. Many medical professionals will need it. And you'll need to stand up for yourself.

SPREAD THE WORD. Let others know about Arachnoiditis, what causes it, and how they can make sure they don't get it.

Posted Jan 7, 2020 by Staplehurst17 4050

Try to find a medical provider who will treat you by following Dr. Forrest Tennant’s protocol. Make sure you join a Facebook group concerning arachnoiditis and check the files and read them once you get accepted into a group.

Posted Jan 8, 2020 by Rhonda 1600

Learn as much as you can join a related support group. Don’t leave it too long after being diagnosed you need to understand your future speak to those like l with 40 years experience

Posted Jul 9, 2020 by Derek 3000

Look up Dr Forrest Tennant’s emergency treatment protocol, and DO IT ASAP. The curable window for this disease is less than a year, and then it is permanent. Incurable. But before a year, a steroid protocol could save you from a miserable life.

Posted Mar 20, 2021 by Anna 2300

Search for dr Forest Tennant and follow his advice.
Search for facebook groups so you can get in contact with fellow sufferers.
Don't get discouraged if your doctor is not willing to prescribe the needed medication.
Choose your own medical team to help you.

Posted Jul 22, 2021 by Vincent 3420

Begin the #Emergency #StartingProtocol
from www.arachnoiditishope.com

Also here:
https://www.facebook.com/groups/ACMCRN/permalink/305389196534501/

Posted Nov 15, 2021 by ACMCRN 2200

Learn as much about your condition as you can. Live your best life after you found out how it may turn out. Start getting your affairs in order as far as the clutter in your life. Take care of yourself. And your Family. Listen to your body and stop doing the things that increase your pain. It will get worse much worse.

Posted Jan 7, 2022 by Machinetoolmkr 5550