Yesterday I had more pain than usual...even with my Lyrica...then I woke up this morning with the cramping in my calves and then when I got up my legs and hands were very stiff feeling and I ache all over....gees it's going to be one of THOSE days! Can anyone tell me a better medication for the pain than Lyrica? (besides the fact that Lyrica is causing weight gain.....ugh!! )
My dr. has diagnosed me with Neuropathy Myopathy at the moment but has taken a bunch of blood work this past week. So hopefully he'll be able to narrow the diagnosis down more.
Does Neuropathy always get worse over time?? Thanks! Roxie

Hi Roxie:

I read in one your other postings that your doctor recommended a weekly IV. What kind of IV?? I mean, what's the name of the medicine that is in the IV??

Thanks, Melody

P.S. You mention you are taking supplements. Is one of them Methylcobalimin B-12????

I take that every day I take 5000 in one pill under the tongue. Some days I add another 5000. It's so easy to take.
If I have no stress (and the weather cooperates), I have no neuropathy. So the Methyl b-12 is doing it's thing.

HI Melody!
The IV is Immune globulin (intravenous) (IGIV) It's used to strengthen muscles and nerves.......but you have to take it weekly (an hr long IV session) for the rest of your life! So it's not a fix.....just a bandaid that makes you feel better. It's a combination of 40+ people's blood to make this serum and the article I read on Google said it's screened for diseases and virus's but there's no guarantee that you won't catch something from it.....tho the odds are very low. With all the problems I already have I don't think I want to take this chance of catching something that someone else had! My Rheumatologist is looking into the IV situation tho.
No, I don't take Methylcobalimin B-12 (but will look into that!) I take the Twinlab formula of vegetarian B-12 Dots Sublingually. They are only 500mg. My B-12 isn't low (from the blood tests that's been taken recently). I take this brand only because my Gastro dr. who did my Gastric Bypass recommened it. I'm not sure I can take the Methyl type because I have Interstatial Cystitis......it might throw my bladder into a flare. But it might be worth trying to see if it would or not.....at this point I'll try about anything!
I'm SO depressed since I've had Neuropathy and all the testing I've had to do....I just wish I could get the pain under control.....or feel like I'm getting a handle on it! Roxie

Ah, you are talking about IVIG. My husband Alan does this twice a month. It's called a double load. Two consecutive days, a month. The first time you have to go into the hospital (usually) for 5 days (so they can monitor and see how you tolerate the procedure), it has all kinds of risks and some can't tolerate it. Alan tolerated it very well.

Until his last one when the bag had a leak (but that's a whole other story). He came down with a temperature the next day of 101.5. I had to monitor him very closely. Some people get really bad headaches. And you say the IVIG is one hour. My husband's prescription is for 4 hours and when the last nurse did it in 3, that's when he got sick the next day. We will never know if the bag was contaminated or what!!!

But research this hard and long before you let anyone give you a one hour infusion. I am not that well informed on IVIG and believe me, other's will jump in and educate you.

I don't know why the doctor told you it's once a week. Maybe some people do this for once a week. But many others do it once a month.


I'm extremely interested why some docs tell you once a week and others do not!!!

And as far as the 500 of he B-12. That's nothing. It's all about the malabsorbtion of it. Doctors are not educated about B-12, but the guys and gals on these forums know what they are talking about. They'll respond to this thread and give you all sorts of good info.
And the numbers for B12 deficiency, well, there is too much of a gap between what's normal and what's not. Aim for a 4 digit number. My number (the first time I got a reading) was 944. I'm aiming for much higher. See, Methyl B-12 heals nerves. Takes some time to do this but it does heal.

If you ask your doctor about B-12 methyl, believe me, he just might pooh-pooh it. Or they might say "can't hurt".

Listen to the people on these boards. They know what they are talking about.

Melody

P.S. Now let's talk about Interstitial Cystitis. How did you get the diagnosis because believe me, what I went through with my bladder (over 10 years ago), well, I wouldnt' relive those days for all the money in the world. I walked around with the pressure down there and I went nuts. Had every test in the book from a cystoscope, to a trans vaginal sonogram. They would always find nothing. I was under a great deal of stress at the time (due to my son's behavior), and now I know that it was all bladder spasms.

But I had gone to urologist, after urologist and one time I asked one of them "how do you know I DO NOT have Interstitial Cystitis", (see I read all about this on the internet and I had all the symptoms), and at the time, the only test to absolutely know if you have this condition is they pump your bladder full of water until they can see the tiny pinpricks of blood on the walls of your bladder. I asked the urologist, "are they going to do that to me?" and he said "are you nuts, we don't do that to women any more".

So have they developed a newer, more diagnostic tool for this condition?

thankfully, in my case, one day (7 years or so ago), I was in the shower and the hot water was running down my body and all the spasming stopped. I wasn't on anything. It just stopped.

I will never forget all those years of bladder torture if I live to be 100 years old.

Melody

Roxie,
I don't know that I'm familiar with Myopathy Neuropathy. Is that one disease or two different diseases?

What was your last B12 test number?

Billye

IVIG? I couldn't live without it! I've an auto-immune mainly sensory CIDP. But the chemistry action/reaction of our bodies to ourselves is very similar.

Check out this part of this site...
http://www.neuro.wustl.edu/neuromuscular/maltbrain.html

For each person, how one is treated, either thru steroids, IVIG or plasmapherisis...it's up to the doc in charge and his philosophy and the patient's stage of neuro/myopathy and any other complicating factors.

Some folks with CIDP and MMN I know of receive short infusions as have you of 1 hour weekly. Others anywhere from 2 weeks to 6 months or more...or as needed.

The magazine called IG Living is a good resource about all the conditions IVIG is used for, and also info on how it's made. Should you haev trouble getting it, they can help too! Wonderful concept, a joint project of most IG manufacturers and home infusion providers. http://www.igliving.com/

Yes, this all does come and go! I wish like you it would GO AWAY more.

Hope this helps! - j

Someone else will probably come along with a technical explanation. In the meantime, proper nerve function is necessary for normal muscle function. When nerves are damaged in such a way to make muscles malfunction or cease to function that could be called myopathic neuropathy, I suppose.

Probably the most important thing is to make sure it isn't the central nervous system (CNS) affecting muscles. Sometimes a treatable cause of CNS damage is allowed to continue because it has not been properly diagnosed.

One of the easily treatable causes that is frequently undiagnosed or diagnosed late, is B12 deficiency (usually due to malabsorption).

Please do read my non-commercial site. It will provide you with important basics that most doctors do not know because many medical reference editors have not been doing their jobs on this issue for decades. I was damaged badly, and unnecessarily, becuase of this.

rose

HI Melody,
My B-12 level was 786 the last time I had it checked, last month. Quest Lab uses 200-1100 pg/mL as the reference range. So I thought I was ok. Guess maybe it's not ok. I'll check into the Mythol b-12.
About the IC problem.......You sound like me! I went thru years of hell with severe bladder pain with no real pain meds or bladder meds. When I moved from Katy TX to Houston, TX I changed Urologists. I found a specialist in IC and he's fantastic! He said they don't use those old tests they used to use for IC.....now if it 'looks' like IC they treat as such. I didn't have the little purple spots in my bladder when it was tested but have every other symptom in the book. Now I'm on Elmron and Elavil and use the Oxytrol patch and I'm doing really well with IC. I still have to watch what I eat but I do anyway because of my gastric bypass. I also take Freeze dried AloeVera and that works like Elmiron to coat the bladder lining.
I know many dr.s have no idea how to treat IC.....it's sad this day and age! I belong to the ICN website and they have lots of great info and great people on there to chat with. I really enjoy it.
I hope you stay in remission from IC. I've heard that there's lots of people who stay in remission, that would be SO nice!
What state do you live in? Roxie

I just posted something on nerve and joint function on the laptop post...

Muscles need stimulation from nerves to function, if they don't get it they atrophy.

On the IVIG, it is actually made from about 1,000 donors per bag, however it is chemically washed, and they get out 'most' stuff that we know of, even Prions. It is probably the safest of blood products. If your problem is autoimmune, it is a good option.

People think steroids build up muscles...not the kind of steroids that you get for autoimmune disease...they can cause myopathy.

IVIG does not actually build up muscles. It is an immunmodulator. It is used to build up immune systems in immunocompromised patients, and to suppress the immune system in autoimmune disease....must be smart stuff.

I had a course of it for 6 months, but it did not help my problem at least they didn't think it did. It is usually reserved for autoimmune conditions due to cost of $3000 or so per bag. If something autoimmune pops up in the future...it would be my choice over steroids...did awful on those.

I started Lyrica two weeks ago and have been on a tiny dose, and have felt totally brain dead. Not for me....plus I gained about 5 pounds...no wonder, I just laid around.....feeling gloomy...and I had nightmares to beat the band!

It is probably a good drug for many people. I couldn't handle Cymbalta either, not without a portapotty attached....oh, and I had complete, utter insomnia.

Discuss your pain frankly with your doctor and tell him what does and doesn't work...I have found nothing that works fully...mostly just stuff to take the edge off. I have noticed when I get calf pain, sometimes, not always a magnesium tablet helps...but check with your doc.

HI Cyclelops!
Thanks for all the info.
I can't take steriods so they aren't even an option for me. I have Barrett's Esophagus and steriods cause major pain with that.
My dr. is trying to narrow down exactly what my problem is....I hope to get tests results next week.
I've had major pain in arms and legs yesterday and today...out of the blue. They were doing a little better....but now I'm in pain. I'm taking the Lyrica but it's barely taking the edge off.
I'm going to call my dr. on Monday and see if I can get into see him and talk about pain meds. I work at a Jr. High and I was on sick leave the last 5 weeks of school. I hope to be better by the time school starts up again.
Take care......love hearing from you! Thanks for all your info.....Roxie