Neuro Appointment - Cross Your Fingers For Me!!!
 

I am getting ready to see my Neuro today. I hope I get some answers about the nerve and muscle damage in my thighs.

Everybody cross your fingers and say a little prayer for me please! I am just miserable with this pain and need some relief. The Lortab and Gabapentin are helping but it's not good.:(

I keep thinking it's going away but it isn't.:(

Hugs
Becky:hug::grouphug::grouphug:

Becky, sending up prayers for you, and crossing my fingers and toes!! Hope you get some good answers, and can find some relief soon!:hug:

Becky!

My fingers and toes are crossed as well!
Wishing you the best,

Niko

Same here, Becky. Fingers crossed and hoping the doc can help ya out. :hug:

Hope the Dr can help you find some relief, Beck!

Keep us posted, OK??

I hope your doctor will have something better that will help. Feel better soon Sweetie. :hug:

Hope the appointment goes well, and that you find a solution for the pain.

How was the apt dear??? hope helped...and dr had some ideas..hugsss,sarah

How did it go Becky/Bff?

My Neuro has never seen anything like what is going on with my thighs. She was a professor of Neurology at OU so she has a lot of knowledge.

She has seen one abscess on a patients arm and one infected site from her MS patients but has never seen problems like I have both thighs.

She said the pain I am having on the top on my thighs is from the swelling irritating the nerves under the skin. The strong nerve pain I am having on the side of my knees is from nerves that are trapped by the swelling.

She has no idea if this could be the result of the Zocor but has definitely not ruled it out. She sent me to the lab and the took a ton of blood. She is checking to see if I have the condition that causes the muscles to waste away and I think that test is called a CPK test.

She and I talked for an hour and decided that I would talk to my long time Cardiologist who retired in last Sept. He is still consulting for transplant patients. She has just moved into the Integris network in SW OKC 2 weeks ago and doesn't know a lot of the doctor's yet.

My old Cardio is in the NW Integris network so I suggested it to her and she thought it was a good idea. She knows what a good doctor he is and even had his son as a student when she was teaching at OU. He and I have a close bond since he was my Cardio for 14 years.

I tried to call him when I got home but he was gone for the day. I want him to take a look at my thighs to see if he has seen anything like this in his 40 years of practice. Since Cardiologists are usually the doctor's who prescribe cholesterol medication, he might have an idea of what is going on. If he doesn't, he will know who I should see.

My Neuro said she was not going to put me on ANY DMD until they come out with the pill form that is in the works. No more shots for me!!!!!!

She is extremely upset that this has happened and just so compassionate. She actually apologized to me. I told her it wasn't her fault. She is truly one of the nicest doctor's I have ever had.:)

She wants me to start increasing my Gabapentin slowly to double what I am taking now.

I didn't get any answers yet but hopefully I will soon. It may just take a lot of time for whatever this is to heal. I am not going back on Zocor no matter what the outcome of all of this. I am starting back on regular over the counter Niacin to try to control my cholesterol.:)

That's everyone for crossing your fingers and your good wishes.:hug::grouphug::grouphug::grouphug:

Hey Becky -- how did your appointment go with your neuro? I sure hope he was able to give you something for the pain. I can definitely relate to that! With the weather changing the pain is acting up again. :( Let us know how you made out!!

WOW Beck~ that does sound strange. Hope you can get into your Cardio and that he'll be able to give you some definitive answers. Take care and keep us posted.

Sending hugs your way~~~~~

becky,

i'm sorry you're going thru all this.
your dr sounds great. i hope between the both of you and labs and consults that you will find an appropriate answer to what is going on...and then some relief.

sending prayers your way.
please take care and keep us posted.

Becky I'm so happy to hear how pleased you are with your neuro, and that she's genuinely concerned and compassionate. It's great comfort to have someone really in your corner! I'm praying you'll be pain free ASAP!! Hang in there, I know you're one tough cookie!! Love ya!! XOXOXO

Becky sounds like a productive visit with the doc, hopefully the blood work or the gab dosage will ease the pain, keeping you in my prayers Becky:hug:

Becky - Saying prayers that all works out well and you can start a better treatment plan. Let us know how everything goes.:hug::hug::hug:

BTW - I am not a thigh shooter as the swelling, reactions, etc. were horrible every time I did my thighs. So I stopped all together. One injection site took a year to clear up.:eek:

Oh Becky, I pray there is nothing serious added to your already confusing pain. :hug:

When will you about the test results? I heard about the pill form of ms drugs. When does she think it will be approved?

I think you have a great doctor and hope you get answers soon. :hug:

I just lost my post for some reason and it was really long so I am going to try again.:(

Thank you all for your good wishes and concern.:grouphug:

I spoke with my former Cardiologist yesterday. I told him about my thighs and he said he thought it was the Zocor attacking the weak muscles at the Avonex injection site.

He said that I need to have my kidney functions checked to see if there is any abnormalties. If there are, then I will need to go to a Nephrologist for treatment. If the blood work comes back ok, then there is no treatment and it takes a long time before the swelling will go away.

As the swelling goes away, the nerves will be able to heal since they will not have the pressure on them. He said that it could be the Avonex and Zocor mix but he leans towards the problem being caused by Zocor. He told me that I should have blood work done every 4 weeks until this heals.

He told me not to ever take another cholestrol medication that is a statin. He said they have rare side effects that attack muscles. The wasted muscle filters through the kidneys and can cause serious damage even death in some cases that are not caught in time.

I spoke with my Neurologist and she was very happy to have the information from Dr. Dahr. She has never seen anything like this reaction in any of her MS patients. She was glad to hear that she had done the correct blood work on me. I told her that Dr. Dahr said I could call him with any questions or she could call him. She said she was very happy to know that and to learn the information he had provided about my situation.

Anyway, I pray that my blood work comes back normal and am trying to be very optimistic that I will heal with no problems but the passing of time.

Hugs to all my friends for your great support. Thank you. :grouphug::grouphug:

Thanks for the update, becky. Definitely hope everything turns out ok. :hug:

Thank you. I will let everyone know as soon as I get the information. I'm going to take a late nap. I'm exhausted with all of this going on.:hug::hug:

Becky, I sure hope this is a temporary thing! i am going to ask Jim's doc again just in case. Maybe the Beta and Zocor or any of the DMD's have this risk? I know that Jim is much tighter the day after his shot, like a clock.

(((Becky))) Saying some healing prayers for you. I hope that the blood work comes back good. Many hugs to you.:hug::hug::hug::hug::hug:

Becky, I also hope this is a temporary thing.

I also take a generic of zocor. I don't have any problems with swelling, but I do remember asking my doctors prior to ms dx if my muscle spasms could be attributed to the statin. Now I have experience stiffness plus spasms. I wonder what would happen if I quit taking it. I may try it for one week just to see.

((((Becky)))) Lots of hugs and prayers for you.:hug::hug:

well it really is becoming pretty apparent what probably caused this, it attacking the injection sites? wouldn't that be an anti body and white blood cells job not some cholesterol meds? did he say anything positive about it healing, like time will heal it so on and so forth? I get this carpy feeling the answer is no, how about a suggestion of a specialist? I pray blood work is fine and any kidney test come back clean:hug: prayers for you and you to feel better real soon Becky:hug:

Sandy,

I hope it's temporary too!

I think you should ask Jim's doctor about the Zocor. I knew they had side effects but what doesn't? You can look on Zocor's website or just google statins and see what side effects they have.

My PCP and Neuro had not dealt with this problem before. I got my info from my former Cardiologist who is retired but still does consulting on transplant patients. He knew exactly what was wrong when I told him my problem.

What out for tight muscles and don't let the doctor's blame all of Jim's symptoms on MS.

Hugs,
Becky:hug:

Trish,

Hugs right back to you.:hug::hug: Thank you for your prayers. I hope to hear something today about the blood work.

Hugs,
Becky:hug::hug::hug::hug:

Barb,

I hope this is temporary and that it was caught before any permanent damage was done. That really scares me.

I was on generic Zocor. My problems are swelling in my thighs at the injection site where the muscles and nerves are weak from have intramuscular shots of Avonex. You might want to check the stiffness with your doctor. I have had muscle spasms since my MS began in 1992 but this reaction is very different.

Hugs,
Becky:hug:

Tara,

Hugs to you!:hug::hug:

I will talk to you soon. You keep resting and try to let your knee heal.:hug:

Becky:hug:

Frank,

Yes, it is apparently the Zocor that is making my life miserable. What a crappy year I have had. I'm ready for the drama to go away.:(

Zocor is evidently attacking the week muscles at the injections site since I have injecting Avonex into the muscle for almost a year.

It's not an anitibody reacting to Avonex because I was doing just fine on it until I started Zocor.

Google Zocor or any statin cholesterol medication and check out the side effects. It talks about muscle damage and it can be very bad.

I hope I get the blood work results today and everything is just fine and dandy.:) Then all I have to do is wait until this gets completely out of my system and hope and pray that my muscles will heal without permanent damage.

Hugs,
Becky:hug:

Wow, Becky, I hadn't been keeping up on reading threads and didn't know what was ailing you.
I'm really glad that you're sharing all of this with us, because we all need to know about things like this. I'm sorry you're having so many problems.:hug:

I take Lescol and Zetia...I've been experiencing spasms and pain in my thighs and legs, but the spasms have been going on even through a med change in my cholesterol meds. But the pain is recent...guess after reading this thread of yours that I should definitely call my pcp.

Again, thanks for sharing...our thoughts and prayers are with you...take care of yourself...:grouphug:

thanks for your thread becky.
i switched my statins a while back from lipitor to zetia because i thought i was having way too much muscle pain.

while i'm on copaxone i still try to be wary of SE's.

i hope your labs come back fine.
i really hope you will start to feel better and your muscles will heal.

Debbie,

Yes, I have learned a lot the hard way in the last few months. I had no idea that cholesterol meds could do so much damage so fast. It is very scary to think that we are taking something that is supposed to help us live longer and it can do so much harm to some people.

I think you should call you PCP just in case and have complete blood work done. My PCP didn't know what it was and neither did my Neuro so if you don't get an answer you might want to check with a cardiologist and have complete check up.

Thank you for your prayers.:hug::hug:

Judy,

That's one of the problems with MS. We think everything is related to it but it's not. I thought when I had the reaction that it was my MS acting up. I had no idea what I was in for.

I will probably go back to Niacin when I am healed. My cardiologist said do not ever take statins again.

Thank you for your good wishes.:hug:

My Neuro called this morning right before I was leaving to have my pacemaker checked.

She said my blood work came back good on everything regarding my kidney funtions.:)

She also ran a ton of other test even checking for Lupus and it was all good.:)

She said my results for rheumatiod arthritis were not good and the RA came back very high. I was shocked. She is faxing it to my PCP and wants me to see a rheumatologist. I will see what my PCP thinks.

I think it might be a false positive since my thighs and knees are so screwed up from the Zocor. I can't have anything else wrong with me, it would just be too ridiculous!

I'm going for naptime, it's been a long day for me.:) I am very relieved that I do not have any kidney damage. It will just take time for me to heal.:)

Wow Becky! Glad you are going to see the doc and have all your ducks in a row...high RA factor...that's not good. I suppose they will run that test again in a couple of months when the inflammation subsides. Just a guess but it wouldn't hurt to go see the Rheumy just in case.

Wishing you well! :hug:

Cheryl,

Thank you!

I am so tired of looking different ailments up to see what they do.:( Mrsd has been so helpful with the Zocor problem.:)

I'm going to have my PCP run another RA test in November when I have my physical. I think it very well may be a false positive from the swollen thighs. I will see a Rheumy if she thinks I need to. Good grief, this is getting ridiculous!

Hope you are doing well! I haven't heard anything from Lauren. I may send her a quick one today to see how she is doing. I'll let you know if she answers me.

Hugs,
Becky:hug:

No one has heard from Lauren. She tends to do that. Evidently she refused the LP? My sister heard that from her son, Lauren's husband. So, no clue on what's going on. She has a tendency to exclude family.


Yes, I know what you mean about having yet another ailment. MS and Reynauds is enough for me along with all my allergies!

:hug: