My Transverse Myelitis Story 

hello Cheyenne! im so sorry to hear how TM has impacted your life from a very young age. know that we are here for you and you are not alone ❤️ please take care my friend ❤️

Hello Aryan, I'm so sorry to hear about tour diagnosis and the fact that you are so young. However, I'm very happy to hear about your progress!! That is amazing!! Keep up the PT, it really made a huge difference in my recovery and I hope it does the same for you. Know that you are not alone and I'm hoping for your continued health. Please take care ❤️

How are houve now Arian? Im Fabio from Brasil. Recent TM pacient

❤Your video was wonderful! A friend of mine who is 68 recently went through exact same thing as you! She received steroids and a plasma exchange. They told her possibly caused by virus. She has an autoimmune disease (rheumatoid arthritis) and they believe that her immune system went into overdrive causing this spinal inflammation! My sister-in-law also was diagnosed many years ago! I know everyone prays for a full return to normal but the reality is that full functional return is rare in most cases. The fact that you were able to walk again is a miracle. I realize that your other issues can be debilitating too. I’m so sorry that this happened to you at such a young age 😢! No age is a good age! I’ve encouraged my friend to get as much physical therapy as possible! Our hope is that she will be able to walk again! Side note….my late husband fell off a roof and broke his neck leaving him a quadriplegic. I’m all too familiar with the struggles of spinal cord injuries! Keep up the good work! You are an inspiration ❤. God bless! Brenda from Ohio

Good morning Erin, I'm so sorry for your misdiagnosis. Were you able to connect with a good neurologist? I hope that you can get more answers and relief! Hang in there ❤

Hello Naomi, wow, I'm very sorry to hear that you were just diagnosed ths May. Yes, we are the same age :) Oh wow, we are so close!! Just 3 hours away :) I totally understand your frustrations. I've met neurologists who don't even know what TM is. So i totally understand your pain. I hope that you could connect with a good doctor and team to help you along your recovery. The UTSW in Dallas is great, our UHSA is getting a lot better. When I was first diagnosed it was a challenge, but now we have 2 neurologists here that have more experience with TM. I'm sure you could also find some good dr's in Houston. They are just hard to come by sometimes. I hope that your PT and OT help you with your foot drop. I know how tough that can be, but you are on the right track. Take care and take care of your daughter :) She is lucky to have such a strong mother like you :) My son is my motivation as well :) Wish you the best and keep us posted on your progress. If you haven't already joining the People living with Transverse Myelitis FB page, i highly recommend. It's a great group where we can all vent, share experiences, etc. You are not along and i hope that you continue with your recovery :)

Hi Cindy! I'm so sorry to hear about your diagnosis. I'm so glad you are now able to walk! That is already such a big milestone!! I hope therapy continues to help you and you continue progressing with your recovery 🙏

Thank you for watching.

Hi Rob, I'm so sorry! I hope your foot drop improves. It did in my case and now I just have a small gait. I hope that you and your son will be back to playing football soon. 🙏 don't lose hope 🙏

@@lauraspeer9762 so kind to reply so quickly. Yes that’s great to hear you’ve improved. I’m doing everything possible/can to get myself better , it’s the not knowing the outcome that’s hardest and everything I did before .

@Rob Tomlinson I totally understand. I'm hoping your body will continue to heal 🙏 you're not alone. All of us TMers are here for you!

Hi Rob. First of all good luck and hope you get to soon play football with your young lad. One month in myself, paralysed waist down and unable to walk. I can’t lift my legs and can only lift my feet a cm or so. How long was it before you could start walking again?

I'm so sorry your daughter is going through this :( I hope that her team of doctors could help her with her recovery. Don't give up. Please join the TM groups on FB. There's a lot of us on there with TM on there or parents of children who have TM and are it is such a great support system. We are here for you.

​@lauraspeer9762 what treatment did you receive? My son is 30th is on Baclofen, gabapentin and Valium and is not working at all!

@lindasilva0827 in the hospital heavy dose of steroids and also after discharge. I was weenwd off after a few months. I've been off and on of pain meds. So far the only ones that have helped are tizanidine and nortryptaline. But honestly they just help me sleep. I'm constantly trying pain relief methods, lots of hot showers, heating pads, heating blankets, massage rollers, massage balls, acupressure stuff, topicals, anything that can get me some relief.

@lindasilva0827 I've tried gapapentin, amytriptaline, baclofen, Lyrica, naltrexone, lymotragine, sorry if I'm misspelling them. I've tried so many but I have had really bad side effects with some, like insomnia, even less control of bowel/blaster, swelling etc. So far nortyptalune and tizanidine don't give me those due effects. They just help me sleep. There are days I still wake up from pain but for the most part, they help me sleep at least.

The treatment that is often not discussed is Cyclophosphamide. Although it is a chemo drug and has side effects, some people have regained mobility by choosing this path when all else fails.

Wow, that's a long time as well! I hope you are doing well and recovering :)

Hello Natasha, I'm so sorry your daughter was diagnosed with TM 😢 It definitely is life changing. I'm glad she has you as a strong support as sometimes the load gets heavy for us. She is so young and faced with such a tough battle. I hope your daughter recovers and knows she is not alone. Please take care ❤

Hello! Nice to meet you. I'm so glad recovery is going well for you! Thank you for sharing your experience, I appreciate hearing from other TMers.

Hello! Oh wow, really? I guess that new information has not hit my area just yet. My doctors have outruled MS on my part. I guess since I don't have new lesions or lesions in my brain. My lesion is pretty large though. It's 4 vertebras long. I'm sorry to hear about the issues you are having. I hope that you have a good medical team that can assist you with all the symptoms you have going on. I'm glad you are not in pain! That is great! My pain is pretty constant. Some days are worse than others, but it's a thorn on my side that never goes away :( I am on meds for pain now, but they don't take the pain away completely. I can only take them at night since they make me really drowsy. Please keep us posted on your juicing! I hope that will ease up some of the symptoms. Let me know how you feel with it. I may give it a shot. Also, keep me posted on your recovery! You are not alone, we are all here for you!

@@lauraspeer9762 have you tried CBD oils before? Some I’ve read say it helps. I used to buy it for anxiety but it got pretty expensive. I’d buy the 1000mg to make it last. I’ll be sure to keep you posted on what they come back and say. I’m praying for you and all of us. I know life happens and all we can do is try! 🥰

@@nikkiau1 sorry for the late reply! Yes i've tried cbd tincture but it wasn't so helpful. I don't think it was that strong though. How is it working for you? Have you had some relief?

Thank you Abena. I really appreciate that! 🙏 ❤

You are so welcome!

Hi Kay! Nice to meet you! Oh wow, I can't imagine the struggle of getting TM and have a little one. I'm glad you were able to get help right away and your recovery went smoothly. 🙏 thank you for sharing your story 🙏

Hey Laura , how long was your recovery , your recovery plan and the symptoms you had to deal with? I’m recovering at this minute in time and 5 months into it. Stiffness and weak muscles main problem and flat foot walk due to stiffness and I think signals and fuzziness but defo something there.

@Rob Tomlinson hi Rob 😊 well I was hospitalized for 2 weeks, then did out patient therapy for several weeks. I would say, to get back to fully walking at somewhat "normal", about 4ish months. I still had a pretty significant gait due to my foot drop but it got better over time. I still had other things like leg spasms, legs giving out, tripping on my own foot, etc, and still do. But as far as mobility, that is what I recall. Also I remember being on heavy steroids after I got discharged so some of my memory is pretty blurred.

Thank you, I hope you are doing great as well!

Hello, thank you for watching my video. I totally agree with what you said. We all are facing a struggle, some greater than others, but with a positive outlook, we can make our life better. Thank you for your kind words, I wanted to share my experience since it is a rare disease and many are lost when they first get this diagnosis. I'm glad that it gave you a positive outlook and frame of mind. We all need to see the good that still exists even when there is bad around. Thank you again for your kindness

Thank you for watching Michael. We are in this together ❤️

Aww don't make me cry!! Thank you my beautiful sister!! I love you so much and I'm so glad to have you as a sister!!!

OMG Brenda... I'm so sorry you and your family are going through so many health struggles. My heart goes out to you. I know how much you love your husband, i will be hoping for a full recovery for him, your mother in law and your brother in law. Please take care Brenda. My heart and thoughts are with you. Keep in touch!

Hello! Oh wow, thank you for sharing your story with me. I appreciate connecting with others that have TM. It helps knowing that we are not alone. Yes, he is my biological son. I had him when I was 24. I didn't have any major issues with him, other than I couldn't really describe certain sensations or pains. He was born healthy and fine. After him, I did have a still birth, a girl who was 8 months old. My issue was that i started having a lot of pains and my dr recommended that i be on bed rest from about 7 months into the pregnancy. One day i was in major pain like contractions pain and went to the ER, well she wasn't available so i had to see another dr who 1 had seen 1 other time because she wasn't available. He remembered that i had "phantom pains" and he just let me stay there overnight. I never saw him, but the nurses talked to him. Well it really was contractions but i guess he didn't take me seriously because i previously mentioned that i couldn't feel that well. I just remember seeing the graph spiking into full contractions. Nonetheless, they sent me home and that night i got the crazy contractions again then suddenly felt everything stop. The next day my dr was in and when i saw her the baby was already dead. My last and final time, i had an ectopic pregnancy, i had to get my tube removed. Since then i haven't tried anymore. I am 36 now and my son is 11. Now i'm content with our family size and am thankful i at least have him. Please don't take my experience as concrete, there are many women that don't have any issues whatsoever. Some have multiple children and had no complications. The only thing i could recommend is choosing a OBGYN that is somewhat versed with neurologic conditions. That is where i went wrong. As picky as we are with our neurologist, we also need to be for our OBGYN. They need to know how to assist since we don't have certain sensations or cues like others. When my water broke with my son, i literally didn't even know because i thought i just had an accident. Because i've struggled with leaks and bladder issues, i really had no clue. Thank goodness my mother-in-law was around and convinced me that it was something else. So anyways, yeah, get a good OBGYN, keep track of any symptoms and don't feel like you are overreaching to don't let doctors tell you it's nothing. I also had that same dr tell me a pain i was having was a phantom pain and i had a hernia. SO yeah, if you want to conceive it is possible, just make sure you are vocal about any concerns or things you have in mind with your dr. You matter and your future matters. If this is something you want, you can do it. It isn't impossible.

​@@lauraspeer9762 Thanks for responding! I've actually never talked with someone who's had TM aside from one person on a forum probably a decade ago. It's kind of a lonesome disease due to the rarity of it. There are lots of little symptoms that linger from it which would not necessarily be noticeable from an outside perspective. So unfortunately, it's one of those things that even if you have a strong recovery, its memory still sticks around. I used to think I'd get over it and move on, but that's not really how that works. My goodness, I don't even have words with the loss of your baby. I'm so sorry, that much have been so difficult. It's heartbreaking and infuriating that you weren't properly cared for. It is a bit scary that people really do need to have someone willing to fight for them when in the hospital sometimes. It happened with me the night I got sick. I am happy to hear about your son though! I knew there had to be someone out there who's gone through pregnancy after TM. I tried searching online through journals and forums. Do you know of other women who have had pregnancies after TM? Me and my loved ones have had some fears over the risks of me getting pregnant, so it's encouraging to know it's been done before. So glad I came across you. God bless.

@bodhi6481 I'm sorry you also experienced some issues with Healthcare the night you got sick! I understand it's a very rare disease so it leaves many perplexed. There's a group on Facebook called people living with transverse myelitis. There's a lot of women on there that have shared their experiences. A great deal of them had positive outcomes!! Don't get discouraged!!! It's possible, I'm sure it's scary, but there's many women who have had no issues 😊

@@lauraspeer9762 I had no idea! I must've been living in a bubble. lol It's so interesting that all the doctors I've talked to don't have a clue that many women have had successful pregnancies with TM. I guess if it's not in a medical journal it's harder for them to know. Anyway, I feel a great sense of relief. Many thank Laura, and all the best to you.

@@bodhi6481 no worries, i know some doctors aren't as versed, even some neuro's. But don't worry, there haven been lots of women who have had success. If you can, join the TM page! :) everyone is so helpful! of course, i'm always here :) Best of wishes to you!!!

Thank you

Hello Mark, oh wow, i'm sorry you've been dealing with this since such a young age. i can't imagine all that you have endured. Thank you for sharing your story. It means a lot to me to be able to connect with others with TM. Please take care.

Thank you Laura for taking the time to reply. I've only discovered in the last few days there is a TM community providing support. I assume you are in the US, the John Hopkins University Hospital seems to be doing a lot of research into TM, perhaps you could participate in one of thier trials. Here in the UK that probably isn't an option. Good luck, you take care too.

@@markglanville6495 i'm glad you are able to connect to the TM communities. It is helpful and comforting having others who can relate to us. Yes, I am in the US. I will look into it. I've heard of others going there for more in depth answers. It may be worth it since there aren't many doctors in my area who are well versed in TM. Thank you Mark. Take care.

Hi Stephen, I'm sorry you had experienced the same. Yes, you are absolutely right. Though I struggle every day, I'm very thankful for being able to walk, work, etc. Thank you for sharing your story and positivity. I really appreciate it! Have a happy holiday season! -Laura

Floyd Thompson Carlisle PA

Hello, I'm sorry to hear about your diagnosis 😔 please take care and know that you are not alone. 🙏❤️

Thank you for watching 💗

thank you

Hi Eugenia, I'm sorry to hear about your diagnosis. I hope you have a successful recovery. I've had TM now for 15 years. Over the past few years, pain is the hardest thing to manage. I don't take any meds, other than Tylenol. I take lots of hot showers and baths, try to stretch and use a heading pad every night. Some days I'm in so much pain, I feel like I barely scrape by, other days I'm ok, however in constant pain. Im in south texas. I don't really follow up with a neurologist because other than pain meds, there's not much more they said will help me. I try to listen to my body and just relax if I am drained. Sometimes I feel bad because I have a 10 year old son but he is aware of my condition and is very understanding. My job doesn't know all the details, but they are aware somewhat of my condition and thankfully they are very understanding as well. I would say it's hard to have "control" it's just accepting yourself and being ok with how you are at this moment. Also making accommodations that suit you. Don't feel bad for anything that doesn't work for you. Restructuring what needs to be Restructured so that you can live at ease, or at least try. It's not easy, some days will be very hard, but you are stronger and will overcome. You have others who are on this path with you. You will overcome ❤️

Of course. Thank you for watching.

Thank you for watching. :)

thank you :)

Hi Sandra, I'm so sorry to hear about your diagnosis! I totally understand the fears and anxiety about being out. I still have those till this day. have you started physical therapy? the sensations change over time. I hope your mobility improves with therapy and a good dr. Yes, there are a few groups on FB. There is one called Transverse myelitis, another called people living with Transverse myelitis that i have on FB, but there are several more. I like that we can share similar struggles, questions, vent and we all understand since we all are experiencing the same illness. The SRNA is also good to follow, Seigel Rare Neuroimmune Association, they often have podcasts and will post them to RU-vid of research and advancement in the field.

@@lauraspeer9762 Thank you for responding and for the information. I am no longer receiving PT. I can walk fine inside my house, but will need a cane for longer distances. I am still weak in my legs, more so in my left (but I am more numb in my right leg). My main problem as far as I am concerned is my dual incontinence. I am using pullups and pads. I guess I am just going to have to ‘bite the bullet’ and GO. I am just so afraid of bad odor. I think that has me most embarrassed.

@@sandracapps5543 I understand. I used a cane for several months. The more you keep pushing yourself, within reason of course, the better it will be. As far as the other issue, I understand completely. I had many times I had accidents and ruined my clothes or other times I tried to save them. Feminine washes are great for odor. I've found those to be the best when I have full blown accidents and need something strong. My dr told me to try to go to the bathroom every hour or 2 just to get my body used to the routine, but that didnt help. What heels me the most is finding out what foods trigger my stomach and avoid them😞 feel free to add me on fb if you ever need someone to talk to

@@lauraspeer9762 Thank you, I appreciate it. I can’t add “You don’t know how much” because you DO know!

Yes, we are in this together ❤️

Of course ❤️

Hello, thank you :) That's great news! I'm glad to hear that you've made such great progress!! My gut issues, like yours, started about 4 years after i was diagnoses. I have seen several gastro doctors and this current one I see is the first one who made the correlation between the paralysis i have and how it impacts the digestive system. Of course, we know we have no bowel / bladder control, but we also have other issues like you mentioned. So what my dr told me was that the nerves/muscles that allow the digestive track to do it's job are somewhat dead, that's not allowing us to properly go to the bathroom. I recommend seeing a gastro that is familiar with neuro disorders because some of them don't fully understand. In my case, i have lots of food sensitivities so i have to be very careful what i eat.

@@lauraspeer9762 Dang, I am going to see a gastro doctor, now my back, like wings from my thoracs is buzzing like those tens units....do you get that? It feels like its spreading, and pains over the heart too.

@@MysticFogGarden i'm glad you are going to see a gastro! I honestly don't get shocking/buzzing pains like that anymore. I used to but now it's rare when i get that. You should ask your neuro and find out what is going on. Hopefully you are ok and feel better soon.

Hello Mohammad, I'm so sorry to hear that. How are you doing now? I totally understand the burning feeling, I hate it. It is so painful and uncomfortable. My right leg is the one most affected as well. How are you coping now?

Hello, what area are you in? I'm in Texas, we have a few neurologist here, but the main ones are in Dallas. Please join the TM group on Facebook. There's a lot of people in there and I'm sure they could help you find someone near you. Don't give up. Join People living with transverse myelitis and Transverse Myelitis support page.

@@lauraspeer9762 Actually we are in India. Thank you for your reply!!

Of course ❤️

Hi Edward, oh wow I'm sorry you have to deal with this disease like the rest of us. :( Have you had any luck with recovery?

@@lauraspeer9762 Still cannot stand on my own... Just need to keep working on it. Your story is very inspirational, really appreciate your video.

@@edwardlin2941 thank you Edward. I am glad that i shared my story and was able to connect with many others who struggle with this illness. I hope your recovery continues to improve!

@amirinamdar9446 hello Amir, I'm sorry you are suffering with TM. There are 2 groups I really like on Facebook. One is a public group called Transverse Myelitis: facebook.com/share/c56F5taHmkqGNWGH/?mibextid=A7sQZp And the other group is people living with transverse myelitis this is a private group. Everyone is very helpful and supportive. Know that you are not alone and we are here for you. facebook.com/share/uzaHcu68a4FvRffY/?mibextid=A7sQZp

Hello Suraj, I'm so sorry to hear about your brother's diagnosis. 😢I hope that your brother continues to recover. I'm glad your brother has a strong support and you are trying to understand and help him. Some days things get very tough and it's difficult to deal with the pain, and the fact of not being like your old self or be able to keep up with others, so the fact that you are working so hard to understand him and make him feel not along is amazing. I wish your brother health and peace. ❤

@@lauraspeer9762 thank u so much for sharing ur experience. Laura Do u have leg shaking Problem during that time?

@@surajsinghaswal1 yes, it happened to me all the time. it still does happen but not as frequent. it happens if i am stresses or nervous, also if i sit too long.

@@lauraspeer9762 okay , u have still this problem ,and which month and year u hve started this transverse mylistis , when will it goes leg shaking Problem, sorry for asking lot's of question.

@@surajsinghaswal1 no, it's ok. i've had TM for almost 15 years now. the shaking is not as severe as before. for me that calmed down a lot. i would say maybe within the first year, that calmed down. but you have to listen to your body, if your body is telling you it's tired or can't keep up, you have to give it a break, that is in my case. every situation is slightly different. for me, it only comes back when i'm very stressed or if i sit too long.

Hi Brooke, oh no, I'm so sorry. Have you gone to the ER? Done MRI's? I've found over the years that many neurologist are not familiar with these rare diseases. TM, NMO, ADEM and others. I hope you can find a good doctor that could help you with all these symptoms :(

@@lauraspeer9762 yes, I’m in the hospital now on steroid treatment. I had to do a blood patch bc lumbar puncture made a leak, struggle is real. MRI’s Ct scans ect….

@Brooke B oh no! I'm so sorry to hear that! I hope the doctors can help you 🙏 sending love and positivity your way ❤️

no i haven't tried either. I have a very numb feeling from the waist down still, but i regained movement after about 3 weeks of hospitalization. I was very slow but i was able to walk very slowly with a walker then progressed to a cane. Over time and with PT i got stronger and faster. I would say i was using a cane for a few months until i finally felt balanced. I think the heavy doses of sterioids helped me. I was also on steriods after i was discharged. I believe i was on them for a few months as well.

@@lauraspeer9762 Thank you for taking the time to posting your experience and also answering my questions. I appreciate it very much. This is day 9 for us. Emma still has no feeling bellow her chest. Im very worried. Likely all her pain is gone and she is learning how to balance her self. She is now sitting in a special chair and is doing activities in there. Every morning i wake up and i ask her to wiggle her toes but nothing so far. My wife and I have been sleeping in the ICU with her.

Hello, I'm sorry to hear about your diagnosis. I'm happy to hear of your progress though! I hope your recovery continues!

@@lauraspeer9762 sister you are recover fully

Yes, we'll I'm recovered as much as possible. It's been 15 years already for me. I think I've peaked my recovery. I can walk unassisted as well and drive. I still don't have full sensation from the waist down, but I'm trying to manage as best as possible.

Sry sister to hearing your problem good bless you sister

@@Stake-l3e you too!! I hope you will continue in your recovery ❤️

De nada

💗

i honestly don't remember. it's still something i struggle with to this day (17years into it). i still don't have much control, so i have to be very careful.

Hello Natasha, I'm sorry to hear about your daughter's diagnosis. It is definitely hard and life changing. I'm glad she has you as a strong support. I can't imagine being so young dealing with such issues, she is truly a fighter...