Looking to help others who feel like there isn't a light at the of the tunnel....

[WantAsTableLife]

Hello All, my name is Sal, in 2005, I was initially diagnosed with TM, but unfortunately the inflammation progressed and later was diagnosed with ADEM. I had the severest form of ADEM which they later named "Locked-In Syndrome." I was completely paralyzed from the jaw-down and after years and years and years of PT and struggles, I am able to walk short distances with a walker and use a manual wheelchair otherwise.

I have decided to share my story after 17 years because I didn't have the emotional and mental support in the beginning of my illness or throughout it and went through some extremely difficult situations without support so I am here to help others that are struggling mentally, physically, and emotionally get through it as well as answer any questions or need advice regarding their condition. I would like to pay it forward. You're not all alone in this! Take care.

[SCI-Nurse]

Welcome to the CareCure Community! I see you have been a member for 10 years, yet have only posted 37 times. Please get more active and get to know others on this forum who can provide you with support, and whom you can support as well.

(KLD)

[Sheri]

Greetings! I imagine you went through a lot of diagnostic chaos? Are you now diagnosed with a definite thing? My first cord lesion was in 1995. Now I have several long cord lesions (MS lesions are dots) and am a scooter-bound “incomplete quad” I guess. I’ve never had visual stuff and tested negative for the NMO gene but my lesions are the right shape for NMO (a cord and optic nerve disease). So, depending who you ask, I have MS or TM of unknown etiology or NMO.

Tell more about your timeline to non walking then back to walking! I stopped walking four years ago except in a pool after lots of kicking to first wake my legs up but I’m wondering whether some intensive PT might get it back. Yup, it’s HARD!

Is your condition still progressive? Are there any drugs? There’s only one for primary progressive ms (if I have ms) that one doc pushes but I’m leery of the increased cancer risk relative to the modest decrease in the rate of progression.

Anyhow, nice to have you here and reaching out!

[WantAsTableLife]

Welcome to the CareCure Community! I see you have been a member for 10 years, yet have only posted 37 times. Please get more active and get to know others on this forum who can provide you with support, and whom you can support as well.

(KLD)

I actually haven't been active since I first opened it because of the many personal struggles that I have encountered through the years as well as being a very reserved individual but through encouragement from my family made me realize that I can definitely help others who don't have emotional and mental support that I lacked as well through my recovery. I really do hope I can help as many people as I can. Thank you for having me!

[WantAsTableLife]

Greetings! I imagine you went through a lot of diagnostic chaos? Are you now diagnosed with a definite thing? My first cord lesion was in 1995. Now I have several long cord lesions (MS lesions are dots) and am a scooter-bound “incomplete quad” I guess. I’ve never had visual stuff and tested negative for the NMO gene but my lesions are the right shape for NMO (a cord and optic nerve disease). So, depending who you ask, I have MS or TM of unknown etiology or NMO.

Tell more about your timeline to non walking then back to walking! I stopped walking four years ago except in a pool after lots of kicking to first wake my legs up but I’m wondering whether some intensive PT might get it back. Yup, it’s HARD!

Is your condition still progressive? Are there any drugs? There’s only one for primary progressive ms (if I have ms) that one doc pushes but I’m leery of the increased cancer risk relative to the modest decrease in the rate of progression.

Anyhow, nice to have you here and reaching out!

Hi Shari!

YES! I went through so many different diagnoses as well! From TM, NMO, MS, etc... finally ADEM... I was diagnosed back in 2005 so treatments were all experimental and I'm guessing a lot hasn't changed since then but from what I have been reading the chances of full recovery is much higher now than before when I was first diagnosed. Anyhow, I had lesions up and down my spine, and medulla,pons, etc... the ones on the spine resolved but I sustained a lot pf damage in my midbrain. I'm left with double vision, nystagmus, lack of gross motor skills however I walk short distances with a walker but mostly wheelchair bound when outdoors. I was diagnosed as C3 Incomplete...I was completely paralyzed from the jaw-down hence "Locked-In Syndrome."

I regained movement in my upper body first but I didn't see much movement until several months after when I went to intensive inpatient rehab. I didn't have movement in my legs for several years, I'd say 3 years after initial loss of movement. I kept getting a MRI for a few years after and thankfully no new lesions and it has been like that since. I tried drugs like Ampyra but that did more harm than good but everyone's body is different. I went mostly the holistic route as far as diet goes, exercising, EMS machine, etc...I haven't seen a Neuro since then only because they never had anything helpful to say for me but again, everyone has their own experiences. Please ask me anything you would like!

Regards,

Sal

[Sheri]

Tell me more about what your rehab entailed.

You feel stable or still improving?

How did docs finally arrive at ADEM? I did a brief search and it looks like a post-infectious childhood disease? I wonder whether you find it as <amusing> as I do that we run in circles to get a diagnosis when the choices are among a bunch of untreatable diseases! 🤪🤪🤪

[WantAsTableLife]

Tell me more about what your rehab entailed.

You feel stable or still improving?

How did docs finally arrive at ADEM? I did a brief search and it looks like a post-infectious childhood disease? I wonder whether you find it as <amusing> as I do that we run in circles to get a diagnosis when the choices are among a bunch of untreatable diseases! 🤪🤪🤪

Hi Sheri! I'm so sorry for the late reply. I didn't get a notification of your reply to my email. So, some things that I did to get back movement was external stimulus such as taking a soft bristled brush and using on my legs, well, my parents did lol. Other things were dipping my legs in and out of cold water, stretching, and EMS machine.

I do feel stable and I personally do believe I can still improve but it just depends on how hard I push myself. The last few years I have had a lot of family issues that kind of pushed me back but I am trying to get back into my old routine.

In the beginning, we were so consumed in trying to find a diagnosis, however, years later, I realized we could've found a more productive way of spending that time. They did an MRI and diagnosed me based on the pattern of lesions and so forth.

Please lmk if there's anything else.

Take care!

[OldRadioGuy]

Hi all, Just joined the group. I'm about 2 years into chronic TM starting at T5. After scores of tests including 2 spinal angiograms, several drug trials, and a spinal biopsy (bad idea but at least it ruled out cancer), there is no diagnosis to be had. It currently affects mostly my left leg, bowels, and urinary system. Unfortunately, my right leg is starting to show signs of involvement so deterioration is continuing. Lots of rehab (including a 3 week in-patient stay after the biopsy) helped a bit but it feels like I'm swimming against the tide. Not sure what will happen when the right leg goes. At least I have good support here at home.

[SCI-Nurse]

Have you had a brain MRI or other testing for possible MS? TM can be a presenting sign of this autoimmune disease. Welcome to CareCure!

[OldRadioGuy]

I've lost count of how many MRIs I've had: from brain down to lumbar. Presents as swelling and inflammation from T5 down to the Conus - too long to be MS. Primary neurologist is a neuroimmunologist at Mass General Hospital. Also went to the Mayo for a 2nd opinion about half way through.

[pfcs49]

I actually haven't been active since I first opened it because of the many personal struggles that I have encountered through the years as well as being a very reserved individual but through encouragement from my family made me realize that I can definitely help others who don't have emotional and mental support that I lacked as well through my recovery. I really do hope I can help as many people as I can. Thank you for having me!

Funny. When I joined AA some meetings had phone lists. I'd add my name and wait for people to call ME.
Years later, I started to call THEM!