I was THAT close to going on cholesterol drugs, if I couldn't get it in check with diet. Instead I went on LDN, and my cholesterol has been in the normal range since . . .

My doc said "keep doing whatever it is that you are doing", and I said "I intend to".

Cherie

Cherie,

This was my first time on cholesterol medication and it lowered my cholesterol to normal in 6 weeks. It must be powerful stuff because it was an enormous drop in a very short time.

I had tried non flush Niacin and it worked really well for me. I got side tracked and ran out and stopped using it and my trig & cholesterol went right back up. I got back on the Niacin and took it everyday for 4 months and my trig went down but cholesterol went up. Weird! That's when my PCP put me on Zocor.

I don't know for certain that Zocor has caused this problem but I can't imagine what else it would be since Zocor has muscle and nerve side effects. It's too much of a coincidence that my reaction started 4 days after I started Zocor.

I hope my Neuro can get this straightened out when I see her in a few weeks. I have been massaging my thighs today to try to get the fluid moving out.

When I went to PT before I had back surgery, they massaged my back trying to move the fluid and it didn't work. I thought maybe it might help my thighs so I'm trying it even though it hurts, maybe it will help. I'm not going overboard on it but am going to see if it makes any difference in the next day or so.

I also printed out some info that Twink posted about LDN and I am going to take it to my Neuro to see what she thinks about it. I just can not imagine going back on shots.

I am in worse condition now than I was a year ago before I started the shots because of the shots. This was my first time on DMD's and I have had MS since 1992. I'm not real happy right now to be dealing with this along with the MS problems.

Today has been my best day since this problem began.

I don't know if the massaging has helped but don't think it has hurt either. I am now taking pain pills along with the Gabapentin.

I have been off of Zocor for 2 weeks so I would think that it must be completely out of my system now.

Whatever it is that is helping is fine with me to have a little relief from the pain.

I seem to have come to a halt in the healing in my thighs. The shot area in the middle part of my thighs is dented in all the way across and is not swollen anymore but is very sensitive.

I still have tightness and swelling in the lower part of my thighs and the very top of my knees. The nerve pain is in the lower part of my thighs and goes down towards the side of the outer side and both sides of my knees. It is much worse on the right side where the reaction first began but it just plain hurts like crazy.

I am going to try to call my Neuro next week to see if she is set up in her new office. I may need a higher dose of Gabapentin to help with the nerve pain. I'm not going to wait until the middle of the month since she may be able to increase it over the phone. I need to get in to see her as soon as possible since I haven't seen her since I remembered I forgot to tell her about the Zocor.

My thighs look so much better than they did but I am still having so much pain. I have had a couple of good days but way more bad days than good.

was hoping for a better saturday night report, I am sorry Becky, there is not a chance of pinch nerve somewhere, dangit that sucks, any suggestions from your Neuro?

I am sorry friend

Frank,

Thank you for your support. I was sure hoping this would get better and go away. It is better but not gone. I guess I'm just upset about having a new problem and tired of being in pain.

Lortab and Gabapentin are all the help I have for this. I don't think there is anything they can do for muscle and nerve damage other than get the right pain meds.

Hugs,
Becky

My Neuro is all settled in at her new office. I have an appointment Tuesday, the 16th so hopefully I will find out what she thinks is behind this muscle and nerve damage.

I am going to ask her about increasing the Gabapentin for the nerve pain. I don't know about increasing the Lortab because I don't want to walk around drugged out all the time.

I'm anxious to see what she says. I don't know what I am going to do about another DMD. I'm going to bring up LDN and see what she thinks. I do not think there is any way that I can have shots in my thighs. We talked about me starting Copax at my last visit but I just don't think that will work with the damage that I have.

I don't know. I will post after my visit.

Becky, maybe ask her about trying patches on the legs like Lycra or something to help relieve the pain. I am sorry your still hurting. I gave Jim his Beta shot (only 1/4th dose) the night before last and his legs tightened up so bad the next day. I am now wondering if he's developing some sort of immunity to these shots. It's going on 15 years that he's been shooting up with DMD's. But, we really wont know until he gets over these UTI's to see what is going on.

BFF!

and found that Avonex can cause elevated CPK levels.

Zocor can also raise these. Combined? Well, not good.
When CPK gets dangerous you will see a darkening of the urine. This is the byproducts from destroyed muscle being excreted thru the kidneys. When this stage is reached, there is often kidney damage, or frank failure in some extreme cases.

from patientsville.com:
http://patientsville.com/medication/...de_effects.htm

and this one
http://www.msassociation.org/news_ce...asp?a=summer07
on Rebif (very similar).

CPK is also elevated in mito disorders, and CoQ-10 is given
to improve this. Statins like Zocor, also can elevate CPK because they block CoQ-10 synthesis that our livers make for us.

While CoQ-10 is iffy still for MS in general, if you use drugs that destroy or block it, then you should consider supplementing with it.
http://www.lef.org/protocols/neurolo...lerosis_02.htm

I would think at least 300mg of softgel enhanced absorption type or 50-100mg of the newer actived form called Ubinquinol.
Both are costly. But since CoQ-10 is a natural substance we all make and use, and since it protects mitochondrial functions, it seems like a good candidate for Becky.

mrsd,

You certainly have given me some good information. I really appreciate it.

I did have 2 UA's done in June. One came back 6/5 as a UTI but I didn't go on antibiotics because it was overlooked. The second one came back as no UTI but abnormal WBC. All I did was drink a lot of water. That's a little suspicious to me.

My PCP just did the Lipid Panel on 6/5 when I had been on Zocor for 6 weeks. My cholesterol was 274 and 6 weeks later is had dropped to 183! That is a huge drop!!!! That is some powerful drug to drop it that much in such a short amount of time!!! I was so excited that it worked so well but now I'm scared of what it did to my body when dropping my cholesterol so fast.

I haven't noticed any darkening of the urine but I will make a point of checking to see if I have any. I have so much more fluid in the last few days for no apparent reason. My thigh swelling was almost gone but now it is worse again, not like it was but worse. I have no idea why.

I am certain my Neuro will figure this out. I am very anxious to see her and see what she says about all of this. Her nurse knew the minute I told her I forgot to mention Zocor during my visit.

Thanks so much mrsd.