Until my little sister Betsy was diagnosed in April with post-viral, sudden-onset Transverse Myelitis, I’d never heard of this horrible disease.
Betsy with my 13 year old niece, her oldest daughter.
Now I am on a quest to learn everything there is to know about TM so we can try to get Betsy well. She’s in utter misery, and largely incapacitated and bed-bound. When she ventures out for an hour or two – like she’s going to today for a preschool event – it’s like climbing a mountain.
And she’s in unrelenting, terrible pain.
Yesterday she had her first of five Acthar shots. That’s a newer treatment that’s showing some promise in treating similar demyelinating diseases, like Multiple Sclerosis, but there are no guarantees. And the side effects she’s had since the first shot yesterday have been just awful.
There isn’t a huge amount of info out there about TM, so I am putting out the call here, hoping that my blog readers who may have been thru a TM diagnosis themselves, or who know someone who has, will share personal experiences with the disease in the comments below. Betsy has a terrific neurologist, but sometimes patient-to-patient info sharing can help provide a lot of ideas and insights for dealing with a rare diagnosis like this.
Here are the kinds of things I am hoping readers with TM will share:
How did your Transverse Myelitis start? What were/are the symptoms you experienced? How has it been treated, and what’s worked the best? Where do things stand today? What about alternative treatments and supplements? Any success with anything like that?
All insights, input and ideas will be GREATLY appreciated.
I recently watched this video (http://www.youtube.com/watch?v=KLjgBLwH3Wc) of a physician, Terry Wahl, who presented at a TED conference and described her approach (mainly dietary) to dealing with MS–which is of course not the same as transverse myelitis, but if I understand correctly also involves demyelinization. I thought of it when I read your post today. I hope your sister's recovery is speedy, and wish you all well.
Yes, I posted about Dr. Wahl's diet the last time this was spoken about… it's very close to the Paleo diet and it's all about eating foods that are healing and less inflammatory which reduces symptoms.
My husband has MS – and while diet is important, I would never recommend forgoing the medical treatments offered. They should be used in conjunction. Addiionally, his neurologist has been specific about NOT eating a lot of high fat animal protein.
Just for the record, I did not say to forgo medical treatments offered. That would be ludicrous. She asked for input and I gave it. That is all. I am not a doctor nor did I say I was.
Hello, My name is Dr. Lee Angle. I practice a very little known specialty known as Upper Cervical Care. We have had tremendous success with conditions like Transverse Myelitis. Please look at the following link. The first part is an explanation of what we do. Later on there is a Transverse Myelitis testimonial. http://empoweredmommies.com/content/Interviewwith…
Please let me know if you have any questions. 865-249-7276
Thank You.
I believe in chiropractic care, but it's people like you who give it a bad name.
I do hope this is just an innocent mistake, rather than predatory snake oil.
1. Transverse myelitis is not a 'degenerative disease' that will 'continue to worsen over time'. Either 'Danny' was misdiagnosed or misspoke. Either way, if you're going to treat an illness, one would hope that you have a basic knowledge of said illness. It is clear that you do not.
2. I'm really trying not to swear here: you're out of your ever-loving mind trying to pretend that chiropractic care can reverse true transverse myelitis. If you claimed that it could relieve some symptoms and promote healing, you'd have a leg to stand on. But you're putting this absolute lie/fabrication out there, with a 'doctor' title, and preying on innocent and desperate people. Check yourself.
This is not the place for an argument. Someone is looking for help not for others to argue. I will say two things. 1. Before you accuse someone of praying on the innocent know what you are talking about. Upper Cervical is not chiropractic care as I am sure you consider it. I doubt you have any real understanding of what it is I do and how it works. You are welcome to ask the thousands of people whose lives have changed due to UC care. I invite you to begin looking around and checking out the multitudinous testimonials of healing and the ridding of disease. 2. The pharmaceutical companies sell all the snake oil that the world will ever need. The link I posted as not my patient nor was it an interview of me. I simply posted it to give an example of someone under upper cervical care. If you remove what is keeping the body from functioning properly (interference in the nervous system) the body is capable of healing itself of just about anything. Again, I hope this lady finds her answer whether it be through the type of care I provide or where ever it may be. If you would like a further explanation I sincerely ask you to email me at [email protected] I have no desire to turn this into an argument when someone is looking for help.
Katie, I don't know about TM, but my partner has MS. The medications have not seemed to help but completely changing her diet has made a huge difference. I'm glad to share our info if you're interested-shoot me a message on FB.
Hoping for the best,
Claire
If you haven't already done so, you might want to contact the Transverse Myelitis Association, http://www.myelitis.org . They have information on treatments and an online forum that may be helpful.
I don't have it but since I'm a hypochondriac I googled this when you wrote that your sister had it. There's a support site specifically for it and someone related a story of how his wife underwent a balloon angioplasty-type procedure that is sometimes used for MS and it spurred an almost complete recovery in her particular case.
Also-is there any way she could have CFS or Fibromyalgia? Both can be brought on by stress. I'm not challenging the diagnosis, it just seemed as if they arrived at this one by the process of elimination. Might be something else to look into.
http://www.transversemyelitis.net/2010/11/30/roxs…
Here's the link Katie.
Hi Katie, I've read your blog for years and I'm on your facebook page.That is so horrible, I have been praying for her since you first posted about it on your blog. She needs to go see an upper cervical chiropractor, they have great results with neurological issues. I am a chiropractor (different type than upper cervical). Upper cervical chiropractic (Blair technique specifically) sees tons of neuro cases that no one else can help, MS, trigeminal neuralgia, TM, …. She can do it in addition to what she is doing medically. Here is the page to find someone in your state, I looked it up, there is someone in Knoxville, Dr. Jesse Angle on Coleman Road. http://www.blairchiropractic.com/locate_a_doctor….
It will help her for sure, I continue to send prayers and best wishes for her.
I believe Dr. Angle may have responsed in one of the above comments?
My husband was diagnosed with MS in 2001. The side effects from the injected medications are known to be far worse that the symptoms of the disease. This is the case with MANY medications for these types of illnesses. I hope for B's sake that these 5 shots are the only time she will require the medication and that she recovers.
Hi Katie,
My husband had TM awhile back. I sent him this post and asked him to comment; here is his response, hope it helps. We will be thinking of Betsy and hoping for a quick recovery.
~ Ginger and Dan
From my hubs:
When I was in my early twenties, I also was diagnosed with TM. My experience was scary, as I'm sure you are aware, because it is rare and the doctors don't really know what it is when you have it. They did so so so many tests on me to rule out other things. At one point they thought it was MS and then they were checking me for venereal diseases!! I had MRI's, spinal taps, and multiple other tests. The TM had effected my lower spine and caused paralysis to my lower body and an even stronger numbing of my right side. Eventually I was told it was TM but that TM really only describes the symptoms, it doesn't explain how or why someone gets it.
I was in the hospital for two weeks and they treated me with Steroids. I can't remember which ones but it brought down the inflammation around my spine. At the end of the second week I had enough feeling in my legs to stand up. I lost the ability to void my bladder during the process and had to use a catheter. It took a month for that ability to come back and three weeks of physical therapy to walk strong again. I never had another onset and I'm almost 40, but I have lingering symptoms. My neurologist told me that with spinal chord injuries, what doesn't fully heal in the first 4-6 months probably won't heal. I still have random pains, my right side is still a tad numb but has feeling, and I have a "lazy bladder" (feel free to google that one). The experience was scary and horrible and most of the time I'm just happy it didn't end up being MS. Not sure any of this helped but I do sympathize. To this day, I have never met anyone else who had it or knew what it was.
Hi Katie,
I have no experience with TM but I do know what it is like to be diagnosed out of the blue with a chronic illness. I was 34 when I was diagnosed with Type1 diabetes and I immediately had to make many, many life changes. It is a challenging journey. I am praying for Betsy that she will heal because of the pain she is in. I'm glad she has the love and support of her family.
Sending good thoughts to you.
Hi Katie:
I'm a librarian, so of course I'm going to suggest that you talk to one in your area. Does the hospital have a medical library/librarian? If not, check with a local college or public library. There are medical databases with vetted information – so much "out there" on the internet ranges from worthless to harmful. Good luck to your sister!
I am just so sorry, Katie. Hugs to you, Betsy and her family. There are many debilitating diseases and conditions out there for which we have little or no awareness. This one is a new one to me. However, it took me nearly 17 years of being a mom and nursing kids through all sorts of things before i became familiar with post viral or post anything syndromes and they are truly scary as they are autoimmune reactions after the fact, so there really is nothing to treat but the body's reaction itself. So much we yet don't know.
A prayer and hope.
I just emailed you some info from "Up to Date" which is a reference we use at the hospital that I work for. If you see any references you'd like me to try to get, let me know and I'll see if I can access them from work tomorrow.
So unfair- hope she gets the relief she deserves.
Agreeing with other comments about diet. I think you'd mentioned vegetarian previously, and I'm wondering if the flu and/or medications taken for flu had depleted Betsy's nutrients and made her susceptible to TM. She may need to eat something non-vegetarian to get well. I don't know what, but it's worth researching if it'll help her heal.
There are many foods that Betsy can eat that have the same protein content as animal meats. I don't think diet is an issue. We don't need animal meats even though I eat fish.
I have heard of Upper Cervical Docs before and I think it would be very informational to at least look at Dr. Angle's care. It could be her healing.
Praying for her relief.
I'm aware that there are many non-animal sources of protein, and I wasn't trying to knock vegetarianism. When we're sick, we need to look at everything that could have contributed. I don't think it's just protein that could be off-balance at this time. It could be some other nutrient, enzyme, fatty acid, etc. that's too low or too high in her particular diet. I believe she should investigate (as she probably already is) every option for therapy, food, medicine –whatever could help her, even if it's a non-veg food or supplement. Because they don't know exactly what factors conspired to result in TM, we can't assume what did or didn't play a role.
Hello To All
My story with TM just began two weeks ago. Two weeks ago I was very active strong fit busy going full ahead. I awoke one morning with a slight warm feeling that moved high in my right side all the down my leg and across the top of my foot. The next day I awoke and my left leg was very weak and I was tired. I went to work pushing off the idea something was wrong.The third day I awoke and the left side of my stomic was numb and contorted my left leg was numb weak and the warm feeling was constant in my right side down my leg and across my foot. I went to the hospital had blood tests and several MRI scans. For five days I had IV Steroids pushed in my body. I am scared weak have lost most of the control in my legs and side and am fighting and trying to learn and get answers. I have Acute Transverse Myelitis. Two weeks ago I was moving mountians. Today I can not move my legs . I pray for all fighting this and I pray for all to recover.
Saying prayers for you, too!
I hesitate to raise other questions about the diagnosis, but you may want to explore whether this could be Lyme Disease related. My Lyme Disease symptoms were/are very similar to this (extreme neurological pain, muscle weakness, etc.), and I received the bite and rash three and a half years before I experienced any symptoms at all (and I had a 2 week course of antibiotics right after spotting the rash). Of course, not all people are lucky enough to see the bite/rash. This started with a flu-like illness, right? That's a classic first stage of Lyme Disease. I pray that it isn't (because, as you'll learn if you do research, the politics and treatments around Lyme Disease are nothing to wish upon anyone), but bringing this up may influence a doctor to try a long-term course of antibiotics. Also, if the doctors are already explored this and ruled it out based on an ELISA or Western Blot test, request another course of tests through the IGeneX lab. Most ELISA tests (and many Western Blot tests) result in false negatives. Best of luck to you and Betsy!
My partner contracted West Nile virus 8 years ago, and because he was unconscious from that, the Transverse Myelitis he subsequently suffered went unnoticed and untreated for a few weeks.
His point of injury is thoracic, so from about waist-down, he is affected.
When he regained consciousness, he was completely paralyzed and without sensation from the point of injury down. He was treated with IVIG to try to stop further trauma. Whether it worked or not is anyone's guess.
Over the next 3 months, he regained sensation (and pain, of course) and some limited movement in the affected half. By 3 months post onset, he could walk with a walker or on parallel bars a few steps. He left the hospital in a wheelchair. We were told that he would do most of the healing he would ever do in the following 2 years.
And that's what came about. By 6 months, we put the wheelchair in the car for emergencies and he used a walker entirely. 1 year after, he started using a cane to get around the house and the walker for longer journeys. By 2 years, he'd given up the walker entirely and used the cane only outside the house.
And that's about where it lies. He has neuropathy which primarily affects his feet. His internal systems remain affected, though it's livable (I would go into more detail privately, if you'd like – but since it's not my story I'll retain the gory details from the public view. Feel free to email and I'll lay it all on the table, including coping stuff.).
TM is unpredictable at onset. Some people recover mostly, some recover a lot (this is where my partner is) and some recover little or not at all. I hope your sister's outcome is on the better end of the spectrum, and that her point of injury is low.
TM acts much more like spinal cord injury (sudden injury, sometimes slow healing) than MS (recurring intermittent injuries in multiple areas), though I know why people compare it more frequently with MS. I would encourage your sister to focus on SCI related research rather than the MS research.
If she smokes, it would greatly improve her chances of recovery to stop or cut back as much as possible.
Hi, me again.
I am well educated (not a doctor) and believe in both western medicine and natural/alternative medicine, as long as it's evidence based. Naturally because of my experience, a large portion of my research has related to TM and related research. I am not interested in an internet argument so I hesitate to refute or post advice for you here but if you want to write with specific questions, please feel free.
Stopping the demyelination is good, sooner is better. After that, it's all about fixing the damage, which is where the real mystery lies. Diet can't hurt, but it frustrates me greatly to see people recommend a dietary approach first. Nobody ever recovered from an SCI because they ate broccoli. Inflammation fighters are good and can slow or stop demyelination, but they don't do much for myelin growth. This is why MS is different from TM – in TM, the focus after stopping the demyelination, is to repair the affected nerves or grow new ones or train surrounding ones to do the extra work. In MS, the focus is always on slowing or stopping the ongoing demyelination.
The demyelination will stop (again, TM is different from MS even though they both deal with demyelination) – the drugs will hopefully stop it sooner, reducing the repair needed.
Write if I can be of any help.