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

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

Posted Aug 16, 2022 by Transverse Myelitis Folks Blue Crew

Find a highly rated neurologist with MS/TM experience. Don't settle with one doctor if you don't get answers to your questions, or feel your condition is not being addressed properly. Trust your instincts. Second, seek a qualified physical therapist. Expect maximum improvements to occur from 1-2 years. Don't give up, find a support network locally if possible, however Facebook has many excellent support groups as well.

Posted Feb 23, 2017 by Nancy 715

Prioritize first it's so important to be your own Advocate and if you're unable to have someone appointed to you to be an advocate for your health do not allow people to dictate in the medical community what your life for look like what they're going to do without you consenting and understanding the treatments but they are administering. Next is to immediately be connected with a network of people who have the disease through Facebook or other websites designed to lend support have open Forum conversations access to research and help better understand the disease itself. One step in established making sure that you're getting put the physical therapy and Rehab needed to recover to the best of your ability and to seek counseling to help you emotionally process the devastating losses that come with this disease. Letting go of fear through obtaining knowledge and information bring great comfort to most that is my recommendation for anyone who's new to this disease.

Posted Feb 23, 2017 by Jen 1001

Ask for intravenous steroids as soon as to try and lesson the damage

Posted Feb 23, 2017 by Cathy 1000

Read everything you can about the disease but be careful with your sources. Read from trusted organisations such as NHS, Web MD, the transverse myelitis society, brain and spine foundation. Remember the old adage, knowledge is power!

Push for the things you need, such as scans, neuro physio, referral to good neurologist, continence service, urology, equipment ....etc.

Accept anything that's offered, it may prove beneficial even if at first sight seems inappropriate.

If in the UK, try to get access to the benefits advisor with your local council. If you need to apply for PiP for example, a good advisor is worth their weight in gold.

See the previous answer re surrounding yourself with people who care about you

Posted May 17, 2017 by Marella Cairns 1050

Stay calm! Listen to your doctor. There is not much of anything you can do if you are diagnosed. Lower your stress levels anyway you normally would. Ask questions and stay informed of your specific situation. Also, doing some research yourself can help calm your anxieties.

Posted May 17, 2017 by Justin 1152

Seek out a local support group, there are more around than you would think, join the TM society, it really helped me & push your GP to get you refered to a neurological centre of excellence, they are all around the country, the main one is in London, The National Hospital For Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, https://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN/Pages/Home.aspx

Posted Jul 24, 2017 by Hagen 2730

don't listen to those who say you won't have recovery after the first 6 months. I improved slowly for 7 years

Posted Jul 25, 2017 by Mindy 2000

Your back is not broken!

The only problem is that you had inflammation that caused damage to the nerves in your spine.

Get someone who will push you to do your best and surround yourself with those people. Never allow yourself to settle.

Posted Jul 25, 2017 by Conrad 2200

Look into TM and get the best doctors you can. Dont settle for less because you want to make sure you get the best care possible. Make sure you ask the dr to give you a plasmapheresis when you first get diagnosed because that could really help you improve.

Posted Aug 24, 2017 by Elizabeth 1200

Do your own due diligence. Learn all you can about TM and all the treatments for various symptoms. I found that my neurologist will try just about anything I want, as long as it does no harm. You might be surprised how few regular Dr.s have even heard of TM. If you've got it bad, look into Johns Hopkins TM clinic. It's the only one of it's kind...I think.

Posted Oct 6, 2017 by Chuck 2000

It would have helped me if I had been told you have hours to change the prognosis for the rest of your life, so mak3 sure your voice is heard and insist on the best neurological care and expertise be ause you are worth it!

Had I known this and had an actual diagnosis, I would have been a lot more assertive in my aporoach.

Posted Nov 30, 2017 by mikado54mark 3150

Physio, physio, physio!!! That is the most important thing in the first few weeks/months. Get as much as you can. Join the TMS (UK) or TMA (USA) and read about the condition and educate yourself on what options are out there as no one else will help unless you ask. In the UK there are support groups around the country to help as well plus FB of course.

Posted Feb 27, 2018 by Gill 1800

Stay calm. Do not think that this means the end of life as you know it. Start physical therapy as soon as possible. Try plamsa exchange then go into a rehab facility for a few weeks to get a jump start on recovery.

Posted Jun 1, 2018 by Clay Garner 2500

Get prepared for the fight of your life and accept the help your gonna need .

Posted Jun 1, 2021 by Gary 3550

Find a neurologist that is knowledgable in the treatment of TM

Posted Aug 17, 2022 by Kevin Weilacher 3420

Be kind to yourself. This condition is very difficult and painful. Never give up and do the best you can. ((Hugs))

Posted Aug 17, 2022 by gloria_kazan 7450