United Brachial Plexus Network, Inc.

It takes a few days for it to work/build up a consistant level in your body. 50mg may not be enough yet as a single dose x3.. I started with 75mg in the Am and 75 at night, then added the extra 75 at night (150mg total) after a week. Build up slowly (as your MD says to) and see what you need. And no, it may not take it all away (pain/feelings).

marieke
I just found the TM fourm it helped alot with questions but also scared the he-- out of me. Is it true as I get better the pain may get worse?? My neck is the only pain I have that and headaches but its 24/7 and can be really bad at times my lesioin is at the C2 level the rest is just like my arms have fallen asleep, I take ambien cr to sleep at night can I still take lycria?

So far as they know, there are no drugs that interact with Lyrica, so it is safe to take with Ambian CR. You can ask your pharmacist or MD to be sure though if you want.

As far as pain increasing or decreasing... it can go either way and can fluctuate between the two. Pain (in other areas), fatigue, stress, your period, anxiety, infections/colds/flu... can all increase the pain. It doesn't usually last though. Most people I know, the pain has decreased as time goes on, and you end up finding the right dose and/or meds for you.

Mine went way down in the last 4 years, though I still have bad days where my butt and left leg are on fire and nothing makes it go away. It happens, but it never lasts.

Yes, reading all the info on the TMA site can be scary and daunting, but it is good info and a great place to get answers and support from others going through the same as you are.

Please keep asking questions and getting info.
Hugs,
Marieke

So from what it sounds like is that the diesase goes away but the symptoms remain??? The doctors said most people don't get it twice and that it doesn't happen in the same spot on the spine if it does happen again. He said that was good news for me since at the C2 level it could kill me but I did see a few people on the fourm that had it at the C2 C3 level. Mare

TM hits you and once the inflammation goes down you are left with the residual effects. It's a disorder, not a disease, so acts a bit differently. Your body attacked the myelin through an auto-immune process. Once it has stopped attacking itself, you are left with varying degrees of sensory loss, motor loss, pain...

3% of those who have TM will have a recurrence. Very small percent.

Any damage above C4 can lead to death as C4 is what controls your phrenic nerve/diaphragm = breathing. There are a number of people on the TM board who have a high injury, C-2-3-4. Some are on ventilators, others were lucky, like you and did not lose motor function, rather sensory was affected.

Marieke
I'm sorry to be asking so many questions. I just have one more how long can an attack take? I see some were affected all at once others a little at a time. I started in Dec with one arm being numb then days later the other then days later the tingling down the spine then no more symptoms until a few days ago I wake up with I guess what is called the banding its tight and tingling around me like I have a bra on too tight. Can bad stuff still happen or am I done? The doctors in NJ know nothing 3 neuro's 2 neuro oncologists and a neuro surgeon and none have treated anyone with this condition the MS doctor was the only one to diagnosis it and I think he took a wild guess and got lucky . Thanks so much for all your help I keep waiting for the bottom to drop out from under me.
Hugs Mare

What you describe is not a new attack, rather the "leftover" symptoms you will have now after the attack happened. They may stay for good, decrease, or go away completely. It takes 2 years to know for sure (more or less) where you stand. That is how long it takes the body to heal itself as best it can. Symptoms come and go and vary a lot in the first year, most in the first 3-6 months.

The Lyrica will help with the banding, as would Baclofen (for spasms).

You will find that you will go through many ups and downs for a while. It's not easy and can be scary.

If you get a loss of motor function, go to your neuro or ER ASAP and get steroids IV. That would be a "new" symptom of an attack.

All the new feelings you have now are BELOW the level of your lesion and therefore not new attacks. And they are all sensory/"normal" progression of TM or any spinal cord injury really.

Marieke, 32 LOBPI, TM @T1 since 2004

I'm really afraid to take the lyrica after yesrterday my pupils were the size of a pin head and I had burry vision and the worst headache the pharmacy said to stop taking it and talk to the doctor but I haven't gotten in touch with him yet just keep leaving messages.
Thanks for your help Mare

Marieke
I had another MRI Fri so the doctor could see if this thing in my spinal cord was shrinking or not (GOD I Pray it is gone) How long does this inflamation stay I know the symptoms can last forever but he said it should be gone with in 3 to 4 months of the onset. I will have the radiologist report by Tue but I don't see him till the 5th of May but of course I will read it and either breath a shigh of relief or start freaking out again. If its not gone should I request steriods or something ???
Mare

Honestly, I have no idea why he did not give you any to begin with if he saw inflammation!

I guess he figured it was too long ago to make a difference, but I am not sure.

Have you had any "new" symptoms or an increase in any? If so, then you may need steroids. If not, I don't think it would do much.

It's possible he will still see the lesion, but that doesn't mean there is inflammation... just damage. The lesion will shrink, for some people they never see a lesion (I had none, but the narrowing was obvious, so therefore inflammation).

Keep me posted, I was wondering about you this week!