Thank you Sally, nice to be welcomed onto the forum

Lisa

Hi Lisalu,

I will PM you with my email address, because I don't pop around here too often, but I read my email every few days, usually.

Infection is bad for some people with MS, and it seems to be especially true for those of us where we are impacted moreso in the spinal cord.

As I mentioned, most people do try steroids, but I opted not to. I was told that although it will knock the inflammation down, with this type of attack it will inevitably come back. That is how I've witnessed it play out for every person I've talked to with this kind of attack too ...

An advantage to using steroids is that they do seem to make the relapse not quite as severe compared to what I went through. However, I have yet to find one person that didn't end up with the same relapse flaring up and being very aggressive again, when they opted for steroids.

In my case, the relapse was very difficult (I know all are, but ... as bad as it gets), but at least it was over and done with. Everyone else did the steroids, and MOST did steroids again when it re-flared. I can understand that because it is very scary, but since the steroids do not change a person's outcome, I'd rather just "suck it up" the first time, even if it is more extreme.

After that initial 6 weeks, and the 6 weeks of initial recovery, I did continue to have ups and downs for 18 months to 2 yrs, and they weren't pleasant. They were nothing like the initial attacks ... though equally as scary because we don't know what's going to happen, and we do know how bad it can get while we are there.

However, all three times nothing was nearly as bad as the first time, once my body went through the main/major inflammatory period.

This thread pretty much describes every step of the way, fortunately (or not ) because Joe was wanting to know everything that he could at the time. I'm glad you find it helpful.

Have you been tested for Devics/NMO?

Cherie

Thank you Cherie once again for your response. I assume I was tested for absolutely everything when I was in hospital. They took bloods, an LP and 2 MRI's and all they could find was the inflammation on my T spine, the 3 white spots on my brain and the O bands in my spinal fluid. I guess I just have to be patient and let this current episode recover but it's oh so hard!!!! Especially when I thought I was over the worst and bam, I'm back to only being able to walk short distances and having to deal with all these symptoms and sensations again. It really tries your patience all this!!!

Thank you again
Lisa x

I wouldn't assume on the NMO/Devics testing, Lisalu, because it isn't something they normally test for.

They used to classify NMO/Devics as a "type" of MS, like RRMS vs SPMS, etc., but in the last 5 yrs or so they have figured out that it the disease process is actually different. They believe at this point that it is another disease, and there is a test for it out of Mayo (the only place that does it), but many doctors are not up on this latest update.

The test has a small false-negative and false-positive result, but if a person does have NMO/Devics, they are normally offered different treatment options, vs. our standard MS DMD's.

It was only a couple of years ago that my Neuro-Optho suggested that I might actually have NMO, because I too started off with only one LARGE spinal and a few small brain ones, for many years. That is fairly tell-tale for NMO, though the lesions themselves can sometimes be identified as NMO one's visually too (by doctors that know what they are looking for).

My MS Specialist was prepared to send away the testing to Mayo, but I opted to not find out at this point in the game. I've had "MS" for a long time, I don't use any of the mainstream DMD's, and I wouldn't use the experimental treatments they offer for NMO anyway ... so for me personally, I didn't see the point in finding out.

But for those who are using the DMD's, I think it is worthwhile talking in depth with their neuro about, to see how "up" he is on this testing.

JMHO.

Cherie

I, too, have the TM diagnosis. I wish we had a separate place here in NeuroTalk, because it has different issues than MS in many cases.

I did not have the severe and disabling first attack of transverse myelitis that many do. I have a friend who was rescued off a mountain after she was struck halfway down the hill while snow skiing. Totally paralyzed. Many of my friends from a facebook group have similar stories of total paralysis, even blindness, at the first onset of their TM. Some go through flares tht are almost as severe. TM is a time-bomb to which we are not privy to the timing device.

My TM came on insidiously, first as tingling in my feet, then numbness, then the pain. It all began after being hospitalized for servere ulcerative colitis right after I turned 50 ... so severe they took my entire colon and rectum. For the first 6 years or so all the neuros I saw diagnosed peripheral neuropathy. Then I checked into the MS clinic where my new neuro nixed that diagnosis when he found exaggerated deep tendon reflexes, which he said would be absent in pn. Declaring I had been mis-diagnosed, he set me up for neuro-ophtho testing to rule out Devics, and MRI's to take a first look. I repeat my MRI's for the first time this fall. The only Rx I am on for this is Imuran, an immuno-suppressant, which made sense because after my colectomy I was promptly also diagnosed with Crohn's. His hope is to take the edge of my immune system and keep down the flares. My body seems to thrive on producing inflammation. None of the nerve, anti-convulsives, an other MS drugs we have tried work or are appropriate for me, as they cause flares of my Crohn's. My life is a constant battle between keeping the digestive system working and not going batty with the TM pain. I have also experienced vertigo, the hug, and some bowel/bladder issues, but it is hard to distinguish those from Crohn's sometimes. I am full of adhesions and the scar tissue at my ileal-an.al anastomosis (I have a j-pouch reconstruction where my small intestine is reattached to my sphincter, so I am free of ostomy issues!) . . . I deal with sphincter spasms that can bring me to tears and stop my day. My poor base chakra is a total mess, that part of me has been so destroyed. Some days I don't leave the house, because it would spend all my time finding restrooms during spasms, or unable to walk without excruciating pain. My gait has changed so much that it is affecting my pelvis and back now, in spite of the fact I screamed for help preventing gait issues. However, I continue to do the exercises and stretching my physical therapists have suggested just to keep moving.

My TM diagnosis could morph into an MS diagnosis if there are any significant findings on my repeat MRI's. Or I could remain an atypical TM patient. I count my lucky stars that so far I have escaped needing a chair . . . or worse. Some TMers can end up in iron lungs.

lady_express_44 -- it has been enlightening to hear of your experience and information on TM. Maybe we could convince NeuroTalk to give us our own section here in the MS forum. I know the sharing we do in my FB group (which is women-only, so we can discuss anything and everything) has been extremely helpful to my spirit. What is heartbreaking is that we have a few teens in our group . . .

That's very interesting that you were dx with Ulcerative Colitis, as I was too in about 1986, then with MS in 1991.

I used the Sulpha drugs for the UC (that's PAINFUL, eh??), up until 2005 when I went on Low Dose Naltrexone (LDN) for the MS, since I had no other options available to me with the mainly spinal-concentration of lesions. By then I had had two severe TM attacks, and my neuro's also said the MS DMD's wouldn't help, based on his clinical observation of his patients.

Of course back then they didn't realize that NMO was a separate disease, so it may have been because some of his recurring TM patients actually had that ... but either way, I wasn't offered the MS DMD's.

With no options available to me, I went looking for something to use, and happened upon LDN. As it turned out, LDN had been under-going clinical trials for Crohns (or UC??), and it proved very successful. It was also being used off-label for MS, so I got on it right away and have used it since then. I have not had one UC attack since I started on it, besides the many benefits I got for MS.

As far as NT opening up a separate forum for TM, this condition is very, very rare actually ... something like 1,500 cases a year are dx in the US. Some of those cases are idiopathic (no known cause), some are from MS, some from NMO, etc., so you probably don't run into a lot of information on it because of that.

As you mentioned, there are varying degree's of "attacks", and resulting disability. Sometimes it is a one-off (most often actually) and other times it is recurring. No matter what, it's GROSS though, IMHO.

I consider myself VERY lucky to only be as disabled as I am, given how bad it can be. I had it very bad in the attacks, but I had a good recovery the first time, and reasonable recovery the second, TG. I had a third TM attack in 2007, but it was a more moderate one compared to the other two. All of mine have been proceeded by infection.

Nice to meet another person who understands anyway!!

Cherie