Update, saw the rheumy
#295329 - 01/05/07 09:21 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, good new/bad news.....good news, my ra is under control according to my blood work. bad news, is that i have neuropathy. This really does explain a lot though.
Some of you may remember that i developed reflex sympathetic dystrophy a few years back after a serious ankle sprain. Apparently this can trigger other nerve damage. As can auto-immune diseases, such as ra.
Apparently the swelling in my hands and feet are not from the ra but from neuropathy. This is also whats causing me to be so dizzy and uncoordinated. It can cause abdominal bloating and C or D. It can cause urinary incontinence, I have had a few problems with leaking when i sneeze or cough to hard!  It causes shaking and weakness, tingling and pain. It can also cause intolerance to heat and cold and pain with the slightest touch. Blurred vision, dry eyes and mouth. The list goes on, it explains about 95% of my symptoms.
There doesn't seem to be an easy treatment though. She gave me Lycra which is supposed to help with nerve pain. She gave me lots of Norco instead of Vicodin, its basically the same thing but with less Tylenol in it so I can take more without the toxicity to my liver.
I am also low of vit d and calcium so she has me taking a boat load of each. She doesn't feel the steroids will help with this kind of pain and swelling so I can decrease 1mg every three weeks so it will be another 6 months or so before I am off of those.
I see her again in 6 weeks and will change the Zoloft to cymbalta if still not feeling better. I am to continue with all the other ra meds though.
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Taking it one day at a time.....
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OMG Michele!! While I am happy you have an answer to all of the pain and swelling, wow! I just checked online about neuropathy and it doesn't sound very good - you poor sweetheart! At least it explains everything, but still.
As always, I wish you all the best!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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I was thinking about you over the holidays, wondering how you were holding up. First, I want to say hooray for finally getting the RA under control. But boo to the neuropathy! I've been dealing with some nerve problems myself - burning tongue, hands and feet - but it's definitely no where near what you're experiencing and my rheumy was like, "Yep, that's strange. Well, as long as it doesn't get any worse, we'll just leave it." 
Big hugs, Michele. I hope you have more good news this year.
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Thanks girls. I agree, I am happy to finally have a name to my pain but it doesn't seem like it something that's going to go away anytime soon and not much helpful treatment out there. A lot of my symptoms make more sense now but what good is that if there isn't much you can do to fix the problem? 
I had a series of 8 spinal injections in my back when I had the RSD in my foot. If my hand doesn't get better, I may have to look into that route but its very risky and no guarantees but my hand looks like the pillsbury dough boys and it makes working/living very hard. It also makes sense why my socks have been bothering me so much lately, to the point that I have cut the elastic off them all! I only have one blanket that I can stand to touch my skin and finding something to wear to work is next to impossible. I only shave when absolutely necessary because it hurts. I tremble so much I can't even drink out of a regular cup because I spill it all over! Well, at least I am not mental, or not at least totally mental! 
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Taking it one day at a time.....
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WOW... as much as the name of it sucks... you have GOT to have some releif just KNOWING what it is.... best of luck to you sweetie in your treatments.... keep us posted. I'm gonna email my Mommy and let her know....she asks about you.
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Well, I'm glad that you have some answers, finally. And I hope that some of the new tactics will help to get your pain and swelling under control. As always, I'm wishing you the best. And, (I hope this is okay), from time to time I update my mom on your story, and she always says a prayer for you.
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If you're not dead, you've still got time.
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Thanks girls! No problem talking to your mums about me! I appreciate the thoughts and prayers!
I do feel a bit of a relief knowing what is wrong, somehow validated but the more I read, the more I find its a pretty crappy thing to have and not easily fixed. Leave it to me to be difficult! It does seemt o be common in people with auto-immune issues and connective tissue issues but mostly you hear about it from diabetics.
Its been a really busy afternoo and looking forward to going home very soon and relaxing!
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Taking it one day at a time.....
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Hi, Michele!
I'm sorry the news/diagnosis isn't better, but at least you have more of a direction to work with.
Question: Have you considered acupuncture at all? It's something more gentle that you could use to try to restore some balance/wellness to your body. You wouldn't have to give up your meds or anything, but you could approach it from a more homeopathic standpoint, too. Some insurance plans cover it. Mine doesn't, and she charges me about $50 a visit. That's not cheap but not prohibitively expensive, either.
Just something to think about. Gentle {{{{{hugs}}}}.
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Christine
Those who can do; those who want it done better teach.
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Good to hear you have a more definitive diagnosis. Even if the treatment isn't clear at this point at least you're not left guessing anymore. And some peace of mind can do a lot for you. Hopefully the new meds you're starting will be able to help, and hopefully you'll be able to completely stop the steroids, even if it takes a while. I pray for continued improvement for you!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Oh my goodness! I'm glad they've finally figured out what's been causing you all these problems, but I'm sorry that it's such a serious condition. Sometimes it's just a relief to know what's causing the problem, knowing you're not crazy & it's not just all in your head (at least that's how I felt). I hope this is your year! Better health & less pain! Good luck! My thoughts are with you! 
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IBS-A...I can never make up my mind 
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Michele
#295519 - 01/07/07 01:32 PM
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Janey
Reged: 10/25/03
Posts: 1716
Loc: Maryland
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That is good news indeed about the RA. Also good news about the steroids and finally being able to wean off of them. I know you are happy about that.
I am sorry to hear about the neuropathy but at least you know now what is wrong and hopefully the Rheumy doc will be able to find something that works for you.
Sending lots of love and hugs friend,
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Janey
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Glad to hear you can at least stop the search for answers. Sometimes that's the most frustrating part....dealing with not knowing what's wrong with you.
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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no fun.. but at least you know what is wrong.. what a mess.. hrm.. wonder if the one issue is causing the other (neuropathy causing your IBS)
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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Typing really aggravates my hands so sorry about not posting to everyone individually.
I had a relatively good weekend. Did my shot Friday and boy does that stuff make me sick, nausous and throwing up. I have a girlfriend who is a doctor and she brought over some, um, well, not really legal green stuff to smoke and boy it really helped me get through the night.  I didn't throw up after that and wasn't nearly as sick feeling. SO, I guess I will start doing that Friday nights after I do my shot! 
I have been on the heavy duty mega dose of vitamins and started the lycria as well and Saturday, I felt relatively well. I mean the usual places still hurt and I was dizzy and would almost pass out if I stood up too quick and the shakes are still really bad but overall, not bad. I spent about 3 hours cleaning house but didn't get to taking down the x-mas decorations, so they will stay up another week. But, my bathroom was pretty gross so I hosed it down, actually got naked, climbed in the shower with a bucket of cleaner and went to town!! Well, I realized the bath matt was moldy so I throw it out.
I put some jeans on and headed out to buy a new bath matt. I drove by this hardware store by my house that is closing to see what was on sale. No bath matts but they had Dyson vacuums on sale, they never go on sale! I have wanted one for years, so, I flagged down a cute little boy working and asked him to carry it out for me! Had to put it on the credit card but oh well. Its the purple one, the top of the line with all the gadettes and gizmos!!
Still needed a bath matt, so off to Target, boy was it busy! Got caught up in trying some cloths on, got some really comfy yoga pants and long sleeve t-shirt, some panties and tank tops, a new book, blah, blah, blah, bunch of stuff I really didn't have to have. Stood 20 minutes in check out, walk 2 miles to the car and realize DUH, I didn't buy the darn bath matt!  Crap, walk back into the store and 20 minutes later back at the car with the bath matt and a bag of cookies!
Got home and took a nice hot bubble bath. My tub is little so it wasn't as relaxing as I was hoping but my little Oliver sat next to the tub licking the bubbles and looking so darn cute. I would have dropped him in with me except we were expecting company for dinner in like 20 minutes!
My girlfriend and her boyfriend came over and Will cooked a great turkey roast and baked potatoes and steamed green beans, yummy! We just hung out for a bit and socialized. It was nice to feel well enough to entertain.
I know I over did it as Sunday I slept most of the day! I hurt but not as bad as usual, even after doing all that on Saturday! Today, I am a bit tired and my hand is screaming but otherwise everything is a dull roar instead of a SCREAM. I noticed my ankles are very swollen but the rheumy said that might happen with the lycria and it should pass in a week or so.
Mentally, I feel a lot better. I was feeling really suicidal there for a few weeks but now, I feel a bit renewed. I'm going to give it a few weeks and do some research. I don't know if I will wait the 6 weeks until I see the rheumy again before I make an appt with a neurologist or do it on my own. She never mentioned seeing one but if I do have neuropathy, I think that's who I need to see. Maybe Ill give the vitamins and lycria the 6 weeks and go from there. I'm still a bit overwhelmed with all the doctors and medical stuff so as long as I don't get any worse, I may just wait. I think I just need to chill, see what happens, recharge my batteries so to speak. While I was driving around Saturday, I was actually singing along with the radio! I am trying to stay positive and not let myself get so down as before. I realize this isn't going to be easy to battle but I think I will be ready for the fight soon.
Thank you so much for every ones continued support through all this, it really has met the world to me! Love and hugs to all.
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Taking it one day at a time.....
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I was interested to read your post and to hear what the doctor has diagnosed because I am experiencing some of the same symptoms. Since my foot surgery 3 months ago, I've had increased pain in both feet (a hot, burning pain, even when I'm sitting). The orthopedic surgeon is sending me to see a neurologist on Wednesday=----and one of the things he will be checking for is neuropathy.
I'm curious as to how the doctor came up with this diagnosis for you. Did you undergo nerve conduction tests? I have had some of those with a different doctor, but from what I understand, the neurologist will be able to do more extensive nerve testing.
The orthopedic surgeon who did my foot surgery had me try Lyrica (3 times a day) this summer---before the surgery---to confirm that I did indeed have a nerve problem. The Lyrica did help tremendously (that was the first time in years that I had walked without a lot of pain), but it made me so drowsy---and I gained about 20 pounds in the 5 weeks I took it! I was so starving that I would eat a sandwich and make me another one! The doctor told me I could not take the medicine long term. I gradually weaned myself off of it (reducing the dosage to twice a day for a week and then once a day for a week, then every other day), and I still experienced some ugly withdrawal symptoms when I finally got off of it. (I felt like I had the flu, was nauseous and achey, and had bad insomnia for about 2 weeks). That finally got better! Of course, the doctor didn't want to attribute that to me stopping the medicine, but I know it was (the nurse told me the drug rep said it could do that.)
Hopefully, it will help you with the pain and swelling. I know it did me! It's got to be better than taking the steroids. I'm glad you finally have a diagnosis. Maybe now you can get some relief.
I am interested to see what this neurologist says on Wednesday about medications for nerve pain. My main concern is that I cannot afford to take anything that will cause me to gain any more weight! Right now, I take a very small dose of Elavil (one of the old anti-depressants), on a as-needed basis only, at night, when the nerve pain gets too bad. Lately, it hasn't seemed to help at all!
Good luck!
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I have not had any of the nerve tests done yet. I think she is basing it on my history of the reflex sympathetic dystrophy and my symptoms. I have the hot burning sensations that you mentioned. I shake uncontrollably, I am very heat sensitive, like I cant sweat and turn beat red and feel like I am suffocating-and I am not talking extreme heat, like if my boss turns the heat up to 70 in the office, I think I will die!! I can't stand to wear socks, they hurt my legs, even shaving hurts. My skin is way more sensitive than it ever was. I have all this visible swelling yet my lab works shows no active inflammation. Apparently the only thing that would cause that is neuropathy. I am sensitive to light and sound and touch and my outside fingers sometimes go numb. I can't stand any sort of pressure anywhere. I have to roll over every 20 minutes and can only sit in the same position for like ten minutes. The pressure of clothes is intolerable and shoes, even headbands! I am very dizzy all the time and my vision is odd, its like everything pulsates. I am always short of breath. I have trouble going pee and sometimes leak a bit when I cough or sneeze or something. The list goes on and on.
Please update me on what your neurologist says Wednesday. I just started the lycria and I don't seem to have the munchies from it but I am also decreasing my steroids. The rheumy talked about switching my zoloft to the cymbalta at my next appt as well. I may have to have some spinal blocks for the pain and swelling in my hands.
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Taking it one day at a time.....
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Hey Michele; after just reading what you did over the weekend;tired me out!!! But really you sounded like a super woman! Glad to hear that you may know what is really happening to you and to great results would be good!! Hoping today you are not worn out and you have a good week! Reading a post up the page, did you read anymore on MS. and get any answers. Possibly your Dr. can fill you in on that?! Take care, and I will keep reading your responses of your updates and keep you in my prayers everyday!! You have been through so much but your upbeat attitude does keep us going day today!! luv Sue ps I know that green stuff makes the world a better place sometimes, oh and it can be for medicinal purposes
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You know, I feel BETTER!!!!!!!!!!!!!! Not great, not pain free but definitely a big improvement. My ankles swelled from the lycria but the rheumy warned me of that. My lovely hubby rubbed them last night very gently to get some of the fluid broken up and they are still puffy but don't hurt as much right now, we will see what happens by the time I get off work.
My hands are still puffy but I would say the swelling is down 30% and the pain is probably about half of what it was. A normal person might say they feel bad but for me, its all relative! I was actually singing in the car to the radio again this morning!!
And, I haven't had D in three days!!!!!! In fact, I have had normal, regular people poops! I don't know if its the boat load of calcium or the lycria or just what but I'll take it!!!! I read yesterday the neuropathy can affect the gi tract so maybe we are on to something. The lycria is still making me a bit dizzy but they say that should pass.
Its been a while since Ive been friends with the green stuff but boy, it sure does take away the nausea like nothing else. I have tried phenergan (sp?) and zofran and still puke for hours after my mtx injection. After a little stink weed, I stopped barfing almost immediately!! So, I guess I will just get that out when I draw up my shots on Friday night! Id rather spend Friday night going DURRRR from being high than puking my guts out from the chemo drug!
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Taking it one day at a time.....
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Re: Thanks everyone
#295766 - 01/09/07 01:30 PM
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Toady
Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada
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Michele, I'm happy to hear the "herb" is working for you. I have never tried it myself, but if it works, all the power to you! I'm glad you had a good day on Saturday, even if you did overdo it. If anyone deserves a good day, it's you!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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It's so good to hear that you're feeling better and having some success with your health issues. I'm glad the green stuff works! That must be such a relief knowing there's something that will actually help the side effects from the chemo drug. And Whoohoooo!!! on no D for three days! That's fantastic. I understand the joy of normal poops!
I didn't know neuropathy can affect the gi tract; I've mentioned before I've had some problems with a burning pain in my hands, feet, and tongue, but thankfully it hasn't gotten any worse and I haven't had D in months. Are you going to see about getting an MRI? A friend's husband was recently diagnosed with MS, but I don't know too much about it.
Big hugs!
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I am absolutely amazed at the no D and regular poops!!! There are different kinds of neuropathy, peripheral neuropathy is the one that affects your hands and feet, there is a sensory neuropathy that messes with how you perceive pain, for example, it actually HURTS for me to shave. Than there is the autonomic neuropthy that affects the things you can't control, like your breathing, sweating and gi tract. This would be the category the RSD I had would fall in!
I don't know if the lycria is helping the D or the boat loads of calcium and vit D but I like it!
I will probably wait until I see the rheumy again in 6 weeks to ask about the mri, unless my symptoms get worse. I really think the neuropathy fits more than ms. Sorry to hear your friend was just dx with it.
How are you feeling?
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Taking it one day at a time.....
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I'm doing okay. Thanks for asking! But I'm home sick today - really bad torso pain, fatigue, and prickly pain in my hands and feet. It's not horrible pain like I've had in the past, but I didn't think I could make it at work - standing, stacking and carrying books. I've gone in when I've felt like this and the strenous lifting exacerbated the pain and made it last longer. So now I have a better idea of when I should take it easy and not push myself. I had a cold twice in the last month and that seems to have triggered some of the lupus symptoms.
In other news, life is pretty good.
Edited by Maria!Maria! (01/09/07 02:40 PM)
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Thanks Cassandra! I used to be a big fan of the herb but I sort of grow out of it! My girlfriend who is the doctor actually suggested I try it and she even brought it over for me! I agree, whatever works! If it stops me from puking, I'm all for it!
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Taking it one day at a time.....
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Yes, that's a hard lesson to learn, when NOT to push our selves! I get a good day every once in a blue moon and I try to be super woman and get everything done and it just makes it worse!!
I hope you feel better soon!
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Taking it one day at a time.....
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 Now that you have answers hopefully you can start to get better. I hope everything works out and that your next visit will be better.
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Glad to hear that they may be finally figuring out what's wrong with you! Having a diagnosis and a battle plan is always good. Even though I may not post much, I still check-in to follow your updates.
And there is nothing wrong with using the 'magic green stuff' as a nausea reliever. I believe it's one of the reasons why my IBS has been in remission - and when I do have nausea or attacks, it's always there to help me out.
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- Jennifer
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I seem to feel relatively ok in the am but as the late afternoon evening approaches, the pain really sets in. I took two Norco pain pills last night and still sat in my chair nearly in tears my feet and hands hurt so bad. Its crazy, if tonight is the same way, I will call the rheumy tomorrow and ask for a neurologist.
I am beginning to wonder if I even have RA and its all neuropathy? I'd be really torked if I have taken all these toxic drugs and they arent even treating the right thing?!!! 
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Taking it one day at a time.....
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I spent an hour with the neurologist this morning. He tested my reflexes, and he concluded that I do not have neuropathy. After looking at the MRI's and X-rays I brought with me, he doesn't think the nerve pain I'm experiencing in my feet are related to my disc problem in my back. He said he wished he could wave a magic wand and make me better, but that I just have a nerve problem (which I already knew) in both feet---not caused by anything, just bad luck. (He looked at the results of my nerve conduction tests done by another doctor.) He said he knew it's painful, and that I have got to break the pain cycle and get back to exercising. (I tried to explain to him that I can barely make it from the sofa to bed each night!)
He said the orthopedic surgeon did the right thing by operating on my left foot (a plantar fascitis and a tarsal tunnel release), but that nerves take a very long time to heal. He said it may take me 6 months to a year (following the surgery which was Sept. 20) to feel better.
He is starting me on Neurontin to help with the nerve pain, and he recommended that I find a water aerobics class to join. He wants me swimming 4 days a week. He did order a few more tests (I had blood drawn). The good news is that Neurontin is used for mood disorders and I have bipolar disorder, so it may help me with that too.
When I told him I've taken nerve medications in the past and they helped temporarily but the pain comes back when I discontinue them, he looked at me funny and said, "I'm not talking about you taking it short-term. If you have to take it the rest of your life, so be it. I take blood pressure medication every day because I need it." Gulp! (I wasn't expecting that.)
I am also doing physical therapy twice a week----and the first time I went, I was in even more pain! But since going last time, my feet have felt a lot better. I went today and begged the therapist to continue the same regimen. (He is using ultrasound and an ice pack, as well as having me do some stretching exercises.) Hopefully, this alone will give me some improvement! I'll take any I can get! I just want to walk without pain!
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Well, I think that's mostly good news! I agree, the swimming is GREAT!!! Even check around as a lot of pt places will offer a hot pool as part of your pt!
I wonder what the difference between the neurontin and the lycria is? The lycria does seem to help me. I felt pretty good yesterday until later than the pain really set in. Same thing is happening today. I read the neuropathy does tend to get worse as the day goes on.
I actually called and left a message asking the rheumy to call me back to discuss the neurologist. I haven't been able to start exercising again either. Like you, some days I can barely walk!!
I hope it doesn't take a whole year for your feet to heal but it sounds like you are on the right track. Love and hugs and thanks for the update.
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Taking it one day at a time.....
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BL - It sounds like you finally have a clearer answer to your problem. I'm just sorry to hear it can take up to a year for your feet to heal.
Quote:
When I told him I've taken nerve medications in the past and they helped temporarily but the pain comes back when I discontinue them, he looked at me funny and said, "I'm not talking about you taking it short-term. If you have to take it the rest of your life, so be it. I take blood pressure medication every day because I need it." Gulp! (I wasn't expecting that.)
I think that's great, how he could relate to you in this way. It's also good to hear a doctor say that you take medication because you need it and if you need to take it forever that's okay too. I think this is something a lot of IBSers or others with chronic conditions should hear. I heard it!
Thanks for updating and sharing this. I hope that you'll get some long-lasting relief from your nerve pain.
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Michele - may I ask why you were taking Vicodin? Was it for the RA ?
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septic hip with birth of daughter - 7/99
hip replacement - 9/03
MS limbo since 5/04
dx IBS
dx compressed L7-8 and T4-5
dx RLS
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Hey you
#296003 - 01/10/07 07:05 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I'm renewed my appreciation for the sticky herbal medicine this year. It's been a miracle for me.
It's helped me get through some of the worst D pain I've ever experienced, really taking my mind off the anxiety of the next attack. There's nothing like it for nausea and pain, and kudos to you for being open minded about your management of your health and quality of life.
You know I think the world of you, Michele, and your ability to cope and adapt really makes me proud to know you. Screw this illness crap, and here's to a better 2007.
~nelly~
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I started taking vicodin a few years ago for the extreme pain of my IBS. IT was just an occasional thing and a relatively low dose. Than, as the ra, or whatever the hell I have, got worse the pain was awful so I pretty much take it everyday. Some days I take more than others. The rheumy just gave me Norco, which has the same hydrocodone as the vicodin but a bit of a different formula and a bit stronger. I have a few oxycodone but we are trying to hold off on those because once you go to those, there really isn't anything else after that!
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Taking it one day at a time.....
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Re: Hey you
#296041 - 01/11/07 07:49 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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CHEERS! Here's to a better 2007!
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Taking it one day at a time.....
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as I'm running late for an appointment! The doctor said the Lyrica and Neurontin are very similar. The Lyrica is a newer version of Neurontin. I haven't gotten it filled yet.
More tomorrow......
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You are very sweet!
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