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New to forum, recently diagnosed with TM

PostPosted: Sun Sep 28, 2008 7:47 pm
by May
I was diagnosed with TM just over three weeks ago and am wondering what to expect.

I woke up one morning just over three weeks ago as normal. About an hour into my day, I noticed that my right leg seemed to be falling asleep. I tried walking around to wake it up, but gradually the weird feeling started to move up the leg into my thigh. When the same sensation started in my left leg, I decided to call for an ambulance. Within an hour of arriving in ER, I had lost the feeling on my right side as far as my waist and on the left side to just above the knee. The initial diagnosis was Guillain-Barré Syndrome.

I had two MRIs shortly afterward. They both came back clear. I believe the second MRI (or brain and neck) was to look for any scarring associated with MS. Later that evening, the neurologist did a spinal puncture, but even before that the diagnosis had been changed to TM. Initial results of the CSF showed nothing abnormal. I could still urinate but was retaining some urine, so a catheter was inserted to reduce the chances of a urinary tract infection. Treatment was started that night, the first of five intravenous doses of Solumedrol.

Over the first few days my heart and respiratory function were monitored to make sure they weren't compromised. Then I was moved to an ordinary hospital ward. On the fourth day, I was able to walk a short distance with a walker, accompanied by two physiotherapist, but bearing a lot of weight on my arms.

On the fifth day, I was moved to acute rehab. I spent two weeks there. The steroid treatment continued, this time in oral form as Prednisone. The initial plan was to taper it off over ten days -- moving from 100mg/day to 10/mg day, one day at a time. However, on the fifth day as I reached the 60mg mark, I noticed a worsening of symptoms. I seemed to lose more sensation in my right buttock and lower right abdomen and it felt as if my bowel area was frozen. It was decided to put me back on the full dose (100mg) of Prednisone again and taper it off much more gradually. At around this time also, I noticed that the muscles on my right side became very stiff, especially in my right buttock and right thigh. I thought this was temporary thing but realize from reading this forum, that it may be something I have to live with. The neurologist prescribed Baclofen for that -- 10mg/twice a day. I haven't really noticed any lessening of the muscle tightness with this, but was warned that a higher dose might cause weakness in the other muscles.

As far as mobility goes, while in rehab I progressed from using a walker to using a cane. I have now been home five days and am walking around stiffly with the cane and navigating stairs one step at a time. I want to go to outpatient OT and PT, but don't have appointments for either yet. The sensation seemed to be coming back gradually to my feet. My left leg feels almost normal now, and although the sensation seems to be almost back to normal in that foot, the foot itself feels stiff. On my right side, the whole leg is stiff, but especially the inner thigh and buttock area. In fact the whole leg is so stiff that it will just stand up on its own. Getting it to move smoothly is the problem. For the first couple of weeks, both feet felt frozen, but now they are warm to the touch.

Just as an additional bit of background, although I thought that I was perfectly healthy before this happened, there was an incident three weeks prior that was probably related. I was waking up during the night with what I thought was abdominal pain spread across the entire lower abdomen and a feeling of distension. When I tried to urinate, it felt like an effort to fully empty my bladder. This continued for four nights. On the fifth day, I also felt bad and mildly feverish during the daytime. I used an over-the-counter test kit to check for a UTI. It was negative. I went to bed in the late afternoon and slept for about 16 hours. The next day, I woke up feeling well again. In looking back, I think this was the first indication of TM.

Re: New to forum, recently diagnosed with TM

PostPosted: Mon Sep 29, 2008 5:25 am
by Lynne
Glad you found us, but so sorry you had to. Sounds like you are progressing really fast with your recovery, hope things continue to go well for you.

Re: New to forum, recently diagnosed with TM

PostPosted: Mon Sep 29, 2008 7:00 am
by marieke
Hi May,
The stiffness you describe is actually Sapsicity. It may go, it may stay.. Baclofen helps, though at 20mg a day you really could increase it if you are not feeling that it is helping. If it does weaken your other muscles then you could always decrease it.

Some people though need some spasticity to be able to walk as the muscles without it are too weak.. it is all a matter of balancing meds/symptoms and knowing what you need to do to be able to function.

3 weeks is still very early to know what your future holds. Recovery takes up to two years.. the most recovery in the first 3-6 months, then the following 6 months, then year (hence the 2 years period). Things will change over time, some things may feel worse at times, does not mean a relapse necessarily, just an exacerbation due to a variety of factors.

Things that can increase spasms/spasticity and neuropathic pain/sensations (tingling, numbness, burning pain..): fatigue, stress/anxiety, your period, illness (flu, cold, UTI..), hot weather, cold weather, rain/dampness...

The "rule" for TM is that 1/3 recover completely, 1/3 recover partially, 1/3 do not recover at all. There is no way to tell where one falls in this until 2 years have gone by. You have already made some recovery and that is great! Get in to PT/OT ASAP! This is what will get you going and get better recovery. Call them, pester them, do whatever you need to to get in now.

Keep posting!

Re: New to forum, recently diagnosed with TM

PostPosted: Sun Oct 05, 2008 2:11 pm
by May
Thank you Lynne and Marieke for the replies.

I made so much progress in the first three weeks that I was hoping I would continue to improve at the same rate. However, now I find that although I have improved at walking and am able to walk more and more every day, the spasticity is getting worse. Also in the last couple of days, I find that the lack of sensation/numbness seems to be getting worse too. My left foot had felt almost normal, now it feels cold and asleep all the time. The right foot and leg is even worse.

I still haven't got a place for physiotherapy. I have been calling them but not pestering them too much in case I annoy them. I'm on a waiting list and this just to come in for assessment. I really don't know whether to push myself to walk more, or whether I should be concentrating on more stretching exercises. I used to cycle before this happened and I'm tempted to buy a trainer/bike stand to turn my bike into a stationery bike. I think it would be good for my leg muscles and circulation.

I saw a really good neurologist when I was admitted to hospital for this. I would really like to go back to see her, but she doesn't' accept my insurance, so I've made an appointment with another neurologist who does. I know nothing about him, I just pulled a name from the insurance company's list of providers. Does anyone on here maintain a list of neurologists by area?

Re: New to forum, recently diagnosed with TM

PostPosted: Sun Oct 05, 2008 3:45 pm
by marieke
If your spasticity is getting worse, then I would push for Baclofen! More exercise will likely make you more spastic, but it does help the muscles get stronger to be able to "break" the spasms. Catch 22! Stretching helps, but not for long.. Really, get meds, try them, if they weaken you too much, then stop. Get in to see a neuro ASAP!