tests tests and more tests. What is the point??
 

Does it ever end? I went in for more fun poking and prodding today.

I am still trying to get the glue out of my hair from the "watch the red dot while the dancing checkerboards make you nauseated and gives you a migraine" test.

Then I saw the neuro for all of 5 minutes in the hallway on my way out. He did bump my follow up to next Tuesday (originally some time in Dec). He is concerned that the numbness is now moving into my left leg. He then warns me that I may begin to lose bladder control and if this happens come back immediately. (No doc, I thought I would wait a few weeks!) He did tell me he will go over the pros and cons of LDN next week, I seemed to shock him by asking about it so early on when I haven't tried any other treatments. But he didn't try to shoot the idea down either, we will see what he says next week.

Then it was off for another fun filled day inside the MRI machine! Today we are doing a brain scan. (HA HA sucker that thing ran away YEARS ago!) Oh and thanks for forgetting my latex allergy when you did the contrast that lovely rash on my arm is really helping me to forget I cannot feel my right side.

By the way, does anyone else get extremely cold from the MRI? This is the second one and both times I could not get warm after.

So as I am laying in the tomb of incessant noise I can't help but wonder what is the point? I mean if you find no lesions or 20, how does the change the course of treatment? And the treatments he is offering have a whopping 30% reduction rate. That is less than a 50/50 shot. Is it even worth it to subject my body to this?

Isn't it fun???:p

I was lucky? because I was diagnosed almost immediately after my first clinical symptom ( i just went blind-easy diagnosis!) but the whole poke prod probe pinch stick process was over pretty quick! I remember having just about every test they do in the space of about a week. It was waiting for all the results that took a long time! I think it took almost three months to get back the final test results (the LP results) cause they had to send those out of state. The doc didn't officially give me a diagnosis until all the results were in.

Bring some good music with you on a CD when you have the MRI! They have a CD player and they will even pipe it in while you are laying there! Just don't start rockin' to the music,they frown on that! Ask for a couple of heated blankets too! They have them hidden somewhere and they will give you a couple if you ask!

As for the efficacy rates for the drugs, the CRABs are at best 34% as compared to placebo. Tysabri is 67% as compared to placebo. LDN doesn't have a rate associated with it because it hasn't been tested like the CRABs have, but many people report good results from it, and there are tests going on now. It is thought that LDN hasn't been tested before because it's relatively inexpensive and not worth it to the drug companies because it is already off patent and they wouldn't make any $$!! and IMO that is a @#$%^&* shame and our government should have spent some $$ on testing it a long time ago!! :mad:

Don't get discouraged... some of the medications do help alot. My husband had good control for ten years with copaxen. He didn't have any more exasperations for almost the whole ten years. It was only after he decided that he didn't need the meds that his MS changed from relapsing remitting to Progressive.

I know that it is difficult to keep pushing on when you are in pain. My husband had a lot of muscle and joint pain too.

You will be in my prayers!


Grammyto09

So your numbness started on your right side, and is now how far up your body? When did that occur (i.e.how long has it been like that?).

Now your left leg is going numb ~ from the foot up? When did that start?

Sorry for the 1000 questions, but it sounds like the start of a Transverse Myelitis (spinal lesion) attack. Do you know if you have spinal lesions? Have you been thoroughly tested for any infection in your body; bladder, teeth, sinuses . . . anything?

Why so much testing? You already have a dx, don't you?:confused:

If they find 20 lesions now-a-days, SOME neuro's MIGHT recommend Tysabri from the get-go, rather then trying the CRABs first. It depends on how pro-Tysabri he is though. :cool:

As far as efficacy of the meds, you have to remember that the 30% (or whatever) is an "average" reduction of RELAPSE RATES. My neuro didn't feel that they were a very suitable option for me because I tended to have a low number of relapses, and the attacks I did have were confined to spinal lesion activity mostly.

As I said, that number is an average, so the good news is that there are likely some number of people who prove to have significant reduction in relapses, and others who have none. You could be one of the lucky ones . . . :)

Of course that doesn't mean the disease won't progress just as quickly as if you didn't have any, or had 5 relapses instead :(, but who likes relapses? :(

If you are intent on LDN, I would propose to him that you are prepared to try Copaxone AND LDN. That way he gets what he wants, and you get what you want; win/win. If you go that route though, it's worthwhile to introduce the two meds seperately.

Cherie

It started as a small spot on my Right calf. That was back in August it then spread up to my belly button and now it is just under my breasts front to back and all the way to my foot on the right side.Then last Thursday (my birthday) I was shaving my legs when I realized i couldn't feel the razor on my skin from the knee down on my left leg.

They found 4 lesions on the spinal MRI and yesterday was to see if there are any in my brain. I have the DX from two different Neuros but I have to finish out all of the other testing just in case but they are both willing to bet money it's MS. I have never been in so much pain and so exhausted as I have in the last week.

the thing I am concerned about is the Grave's disease Dx from 99 and the Bipolar dx from 2004. I don't know how all of these are related, but they are all kicking my butt right now. And the 45 mile commute to work when you can't really feel the pedals is not a pleasant experience. Especially with my 4 yr old in the car. Hopefully we will get something accomplished next week.

He did say something about steroids.... anybody had any luck with these? he says it would be a last resort kind of thing.

Ah yes, the "rule out the mimics" tests. I felt like a lab rat when that was done, especially with all the bloodwork they had to do. :rolleyes:

I agree with you about the VEPs. Wasn't fun for me either, and made my tummy do flip flops.

Some MRI places have the ability to let you bring CDs or at least pipe through radio stations to cover some of the noise of the machine. They have to cover me with a blanket before they send me into the MRI, because it gets cold for me too.

I personally have never been on steroids, so can't help you with those questions. :(

Legzz - the MRI makes me cold EVERY time! Ask for warm blankets, they have them. The poking and prodding wears me out too. Hang in there...we have all been there. :hug:

Ah yes, I had the pleasure of the DX process, twice....once in 1976, which included a myleogram and many blood tests. I was DX and then I had a lovely 17yr remission, of sorts. Then in 1993, I had a whopper exacerbation and went to the hospital, where I experienced all the new fangled tests....MRI...etc, etc, etc...whoopee!!:rolleyes:

All that was available in 1976 was Prednizone, so I hd a bit of that and it may have helped, since I went into remission, but I may have anyway, who knows.

In 1995, or thereabouts, I started Avonex and stayed on it for 7 horrible months of awful side effects.....then onto Copaxone for 10 months, no side effects but I progressed from RRMS to SPMS..:mad:...so I stopped the poopy shots and did nothing for awhile.

Then I discovered LDN in April 2003 and the rest is history..:D I felt better right away on LDN. It didn't cure my SPMS, but did keep me from worsening in disability and eased many of my yucky symptoms. I've been on it for almost 6yrs and am pretty much the same in disability as I was in 2003....

I have advanced in years, however, so I am a little slower and less agile, but still have that overall feeling of wellness that LDN has always given me.

So sorry for all the agony of testing and your MS pain..:( I wish you luck in getting a script for LDN from your Doc.. There is really no reason not to, since it does no harm and you believe it will help you. The Copaxone...eh...that's your choice, but I suggest you try the LDN for at least 6 mos, before adding Copaxone, if that's your decision.

Good luck and good wishes..:hug:

Well, I guess that wouldn't be a typical "acute" Transverse Myelitis attack, as they often come on very quickly (both sides within a week or two). However, it does seem clear that your spinal lesions are causing this, which is exactly how MS made unveiled itself with me too.

There are very few conditions that present with spinal lesions, and it's highly likely they are on the right track with a MS dx. If they can find lesions in your brain too, it will be a slam-dunk . . . but for now they are looking for dissemination in space (neurological damage in two areas of the CNS) to confirm MS. They would be trying to take Devic's disease off the table too, which is like MS but mostly only affects the spinal and optical nerves.

Spinal lesion attacks are wicked, especially if they come on very quickly. Both sensory and motory nerves can be affected, and how high up you get numb will determine which spinal cord lesion, i.e. a C spine one, or a T spine one is flaring right now. So for instance, in my first attack it was my T6 (I think) lesion, and the numbness stopped mid-way through my breast on one side, and just above my breast on the other. When I had my C spine attack(s) though, the numbness included my hands, tips of my ears, vocal cords, etc.

I have always heard, and my neuros and doctors have fully endorsed, that "sensory" attacks would not be treated with steroids. Although these kind of attacks are relatively rare, most people I've talked to have chosen to try steriods because they "hope" they will help . . . but I have never seen the use of them change the outcome or time to recovery. For that reason, I didn't take them on the 3 occasions I've had these attacks.

JoeMac went through a very acute TM attack this past summer, and we walked him through it on a thread here. Please be advised that if you are a person who would rather just face things as they come, this isn't going to be a thread you will want to read:

http://neurotalk.psychcentral.com/sh...verse+myelitis

This spinal lesion attack you are in is presenting differently though, in that this has happened over several months. The only time that happened to me was when I had a tooth infection that I ignored FAR too long, so I will reiterate that you should be fully inspecting your body for any sign of inflammation or infection of any sort right now. :cool:

Cherie

Oh, and I always loathed going to the doctor, especially since my mom was dx schizophrenic. I probably had MS going back to the 70's, but I ignored a lot of symptoms because I did not want to get labeled.

However, when you are at the point of 4 objective lesions in your spine, and a classic presentation of spinal lesion activity, they do not doubt you. :) For me that occurred in 1991, years after my first symptoms.

Bipolar can be as a result of MS (over time), and/or some people present first with bipolar and eventually the REAL MonSter (MS) makes itself blatantly obvious. They are quite used to running into this. ;)

I don't know anything about Grave's disease though . . .

Cherie