Transverse Myelitis - Multiple Sclerosis Message Board

UK SUSIE · 06-05-2009, 05:58 AM

Hi,

I have been posting on the Neurology board as I was told I had Pheripheral Neuropathy six weeks ago however a visit to the neurologist this week diagnosed me with Transverse Myelitis. Now I know this symptom is fairly common in people who have MS. Both an uncle and cousin of mine have MS. I am having an MRI brain scan but have been told the waiting list is three weeks. I have already had spine MRI and back and chest X rays. I am scared but at the end of the day will have to deal with what ever the outcome is.

Basically I started six weeks ago with a numness in both heels, which spread to both feet, then up my legs and then to waist level. my feet were freezing cold, my legs felt hard and swollen although they were not. I had a feeling of elastic bands gripping below my knee level. I lost awareness of the need to go to the toilet, however I had no accidents. My bottom felt as if I was about to pass an orange all the time. Sorry cannot think of howelse to describe it.
My symptoms have subsided over the time but I am still having a problem with my feet, however they now feel more like there is something inbetween my toes all the time and a constant squeezing tingly feeling around my tummy and back and now I have developed a painful rash on my genital/perenium area. It feels very raw and itchy.However it does not hurt me to pass water. I have only been given pain killers (taking) and Amtriptyline (which I have not taken)

I would be interested to hear if anyone else has had similar experiences to me or might know if this rash is related to TM as I have searched the net and come up with no answers.

Susie.x.

MSJayhawk · 06-06-2009, 07:57 AM

Sorry to hear of your problems. Although MS might be a factor, just a few of the following maladies could also be causes: lupus, sarcoidosis, CT disorders, Lyme disease.....

I have not had the onset as you described, but I have also been around MS long enough to know that MS can onset differently between individuals. I can empathize with the tribulation you are going through not knowing. i will keep you in my prayers.

scgirlgwd · 10-09-2009, 04:21 PM

I was diagnosed with Transverse Myelitis over 4 years ago. The numbness began about 3 days after a "flu bug" hit me pretty bad. It started in the feet and went up to the waist where it stopped. Very much like what you described. I went to a family doctor 1st and he, suspecting MS, ordered a brain MRI. I was told by a nurse in his office that it would take several weeks but when I called the doctor back and questioned him about this, he said "No, I want you seen right away". ( A neurologist later told me that it is very important to have those scans/testing while you are having the symptoms.)

The family doctor passed it off as being some freak thing related to the flu (after the MRI results/blood tests, etc) but I didn't feel comfortable with this "diagnosis" so I consulted a neurologist and he ordered an MRI of my spine and said that is what he would have looked at first...searching for inflammation b/c that is what causes the numbness and what he would need to see to diagnose as Transverse Myelitis. The inflammation was visible but very mild. Depending where the inflammation is on the spine determines where the numbness localizes. Since I was on the "upswing" of this, no spinal tap was performed or steroids administered. My doctor said this was now a matter of time in waiting for the inflammation to go away and the steroids that typically speed that up would have side effects worse than what I was dealing with. So I am thankful for that.

He also looked at my brain scan and said that in MS cases the brain scans are "cloudy" and mine was clear. So having that done first wasn't a total waste b/c w/o it, I would always wonder!

It did, however, take a full year and a couple of months for me to regain normal sensation in my legs. After that, whenever I would have an excess of carbohydrates (bread, potatoes, etc), my knees would be numb the next day???? Not a problem anymore though...and I do eat carbohydrates regularly. (Don't think that is a symptom but something I noticed with me).

Of course you know Transverse Myelitis is very rare...1-4 per million people per year!! So, it's great to connect with people on this message board dealing with the same illness...wish I had this 4 years ago!

Angie

UK SUSIE · 10-10-2009, 07:54 AM

Hi and thank you for your story. It is nice to share information and know you are not alone.
Now 7 months have passed since my first symptoms appeared and mostly my body is back to normal, all exept my toes on my right foot which feel numb but I know they are not because I feel the hot and cold and pain if I bump into something but they are just not 'my normal'. I am still getting the buzzing vibrating in my legs, I have noticed this more lately as my job has become increasingly stressful. Given more work to complete and not enough time to do it in. Then when I come home instead of being able to switch off I sit and worry about what I have not done and what I have to do and I can feel the tingling more especially in my right leg. I also feel a tingling in my lip like when you are going to get a cold sore so that leads me to believe it is something to do with my nerves. I have had the back and brain MRI's and a Lumbar puncture, still waiting the outcome of the LP. Next appointment with neurologist 8th dec. I suppose at the back of my mind I just do not want to have another attack like I have had ever again. I hope my toes go back to normal, it gives me hope they may if yours took over a year to normalise. My doctor said that what had not returned at 6 months probably would not return at all. lets hope he is wrong.
Thanks for sharing.
Susie.

scgirlgwd · 10-10-2009, 10:20 AM

Susie,

I remember worrying about that too. The numbness lasted so long that when asked if it seemed better, I said I couldn't tell if it was getting better or if I was just adapting to it!! Although, I could function with my legs/feet, it was just so frustrating! My doctor did tell me that it could take up to 2 years for normal sensation to return. Thankfully, I was back to normal a little sooner. Oh, the simple things we take for granted until something like that hits us!

I still have a little difficulty walking with backless shoes (flip flops)...I drag my right foot a little like I'm trying to keep that shoe on...could be a habit and could have walked like that before...idk...?? Just something I am aware of now.

I do not ever want to deal with that again either! Mine occurred 3 days after the flu and I noticed it while in a hot bath shaving my legs. I have been really sick once since then and I kept waiting for the symptoms to appear...only they didn't. I suppose that will forever be in the back of my mind during an illness after having gone thru this.

You sound like you are gaining the feeling back slowly but surely and I would be willing to bet your doctor is wrong

Give it a little more time...it's not a sudden thing b/c I think you kind of get used to the numbness and you don't notice it as much. But one day you just realize it's better...or GONE!

Hoping and praying for the best for you!
Angie