An update from "Needs Advice" thread Feb 5th. Thought it would be best to start a new thread.
I had my new MRI a few weeks ago and was to meet with my PM doc Tuesday this week. After the phone calls I have made and my last visit with him and all of the monthly visits and way I was made to feel I decided to look for someone new. (also at the advice from you too.) Sometimes we get so caught up in the vicious cycle, we can't break free and clear our minds as to what course of action to take next. I did a lot of research and pretty much most in our area do not have good reviews. Bearing in mind people usually only post negative experiences, I kept looking. A girl at work has been trying to talk me into going to her doctor and see what he thinks. I searched his reviews and they were all raves. I made the call and had to leave a message. It was 24 hours before I got a return call. That bothered me some because of the experiences I have had, I thought-oh boy here we go.
Well I made the appointment and I met him today. He spent a full 1 1/2 hours with me. Can you imagine? I brought in what records I had and made a list of everything that is bothering me and included other symptoms I have in case there is any relation whatsoever such as my RA type symptoms, WBC and such. Things that no one can figure out. I told him that in case we forgot to cover anything it would be there for his review later. He was really happy about that too. He was so wonderful on every level and seemed more knowledgeable about the entire body inside and out than any other doctor in any field I have ever met. I left feeling like the weight of the world was lifted from my shoulder and a new hope.
Longer story shortened, he believes the bulk of my back and leg pain, (Sage are you reading) is from my right SI joint. He is going to start there and work his way up to my neck and tackle my back/neck problems and as many others that he can. When I left he smiled and said we will be seeing alot of each other in the coming weeks. I go back next week for the first part of the SI whatever he plans.
So needless to say, I am very very very happy today and hope and pray that this man is the one that will give me back my life to a degree where I am not just existing but able to enjoy at least some of it. I hope all of you get to have this too. Don't give up and don't let them make you feel like crap. We have enough of that with the pain.
Thank you again for all of your advice and encouragement when I have needed it most. Cross your toes for me!
Frosty, I have so many similar symptoms. I was in a car accident last year and have shoulder, neck, lower back pain and recently my legs have been aching so bad i can hardly stand it. My feet tingle and cramp as well. After the accident I had a big lump in the SI area on my left side and it was very painful. I got an fluoroscopy injection there. I'm on my second PM doctor and appointments are too few and far between. I am not using any pain medications because she doesn't like to prescribe them for fear of patients becoming addicted.
I was just wondering why you mentioned your WBC. I have noticed that mine always comes back low on all of my tests and I mention this to my family doctor but he never seems concerned.
Btw, I'm so happy you've found a PM that is promising.
I mentioned the WBC to him too because I have had a white blood cell count as well since about 2 years before my back problems were diagnosed. My primary doc is convinced it is the biggest flag for lukemia but I have had 2 bone marrow biopsies that have been negative. (thank goodness!) But they haven't been able to identify why it is so high. It fluctuates from a little high to very high and is never consistent from one bloodwork to another. I mentioned them to this new doc in case there is any connection with all that is going on with me. Honestly, aside from my back, neck and leg problems, it is as if my body is attacking itself. This could by why the joints are affected too, by body attacking the joints as a foreign invader. It's crazy I know but they say not to leave anything out because all of these symptoms tell a story to help them diagnose.
I don't know where you are but here in FL most docs make you come in monthly now. It can get old fast when all you get is a med refill. Gets expensive too. In the beginning, they didn't put me on meds either and when they did it was very mild stuff that didn't help anyway. Tests and appointments were anywhere from 3-4 months apart and during that time it was agony. We know how we feel, convincing others isn't always easy to do. I personally am just trying to get some quality of life back. Since I went back to work, I can't do anything but work. I don't want to give that up if I can possibly prevent it so I am trying a new doctor that is going to take a more aggressive approach. It doesn't mean it will work or help but I am praying that it does and am very thankful he is going to try.
He also told me to start taking 500 mg of magnesium at bed time to help with the leg and foot pain, spasms etc. It is over the counter so if you want to give that a try, you should be able to. He also said that epsom salt in your bath is the same thing so a nice soak with that could help too. I am in agony with the spasms. Soma really helps but I take it at night only. I hope the magnesium works really well so I can stop the Soma though. It does take time for the magnesium to make a difference.
I mentioned the WBC to him too because I have had a white blood cell count as well since about 2 years before my back problems were diagnosed.
So yours is high? Mine is always low so it makes me wonder what that is an indicator of. When I looked it up it said it can result from many different situations, such as chemotherapy, radiation therapy, or diseases of the immune system. I've had so much radiation from x-rays, CAT scans etc. in the past couple of years due to my illnesses and my recent car accident. It concerns me that my WBC is low. In a recent MRI they found "abnormal areas of cell uptake" and a bone scan was ordered. More radiation. I hope all of these tests aren't affecting my WBC or bone marrow.
Originally Posted by Frosty6
He also told me to start taking 500 mg of magnesium at bed time to help with the leg and foot pain, spasms etc. It is over the counter so if you want to give that a try, you should be able to.
I know someone who has fibromyalgia and takes magnesium for it. I think she said she also takes vitamin D or calcium, I can't remember which. She says it really helps her. I think I will ask my doctor about the magnesium and see what she says. I get these massive cramps in my feet and toes and occasionally in my calves. I don't see her until March unfortunately.
I would really like to go to the Mayo Clinic. My family doctor wanted to refer me there but I'm not sure my insurance will cover it or that I am up for the travel.
I hope that your PM doctor works for you and you get the quality of life you are seeking. I know exactly how you feel. We just want some measure of functionality back and we would like to live under a certain level of pain each day. We shouldn't have to suffer so much every day.
Frosty!!!! I am so thrilled for you. This Dr. sounds so wonderful...actually listened to you....I am glad that you told him everything that has been going on with you...this way maybe he can put the puzzle together. The magnesium makes me laugh....I have taken that for my heart....and to hear that it helps the Fibro...well, that is another bonus...I will have to start taking it again....even if I am not having any Tachy with my heart at the moment... We kind of knew that you might have the SI joint problem...too bad you can't see Dr. GS....especially now that he is doing the new procedure... This Dr. seems willing to try new stuff...and I am thrilled for you...it has been way too long...gosh...how long ago since we went to the Mayo...where all they did was give us the shots...one after another after another...they were nice enough..but didn't really do anything...and the COST there is amazing...Allicat...you might want to reconsider the Mayo, unless you have really good insurance...it cost me a lot...and I had good insurance....and they didn't help me at all....just made me gain a bunch of weight...
Lisa....let me know how this is all working out for you...I am just so excited for you!!! (how sad we have to be excited for each other about a new Dr!!!! But It is true...I am hoping this Dr. will be the answer for you....)...take care....thinking of you!!!
The magnesium makes me laugh....I have taken that for my heart....and to hear that it helps the Fibro...well, that is another bonus...I will have to start taking it again....even if I am not having any Tachy with my heart at the moment...
Hi Sage, magnesium is good for many things. I believe this person that has fibromyalgia takes it with calcium at night and she says it also helps her sleep. I was told it would help me with my migraines. You should ask your doctor which kind and how much to take.
Originally Posted by Sage48
Allicat...you might want to reconsider the Mayo, unless you have really good insurance...it cost me a lot...and I had good insurance....and they didn't help me at all....just made me gain a bunch of weight...
Thanks, it's good to get feedback from people that have treated there. I wouldn't want to travel all that way and spend all that money only to be disappointed.
Sounds like this Doc is a really good one Frosty. Just the time alone he spent with you speaks volumes. Shows he really cares. I hope things work out for you.
I'll be curious to see what you think of Embeda. It's a new med and that's why the pharmacy had to order it. Just as a heads up, it is oral morphine and has naltrexone in it. If taken as directed, it passes through unused. However, if the med is manipulated in any way, it's released and the person goes into immediate WD.
There have been some cases of the med working incorrectly....Don't mean to scare you, but rather give you information. Just wanted to let you know in case you notice anything, you'll know what it is.
Embeda is manufactured by King Pharm. What's really interesting is that King recently purchased Avinza and there is speculation that they may put the Embeda technology into Avinza...Or discontinue Avinza and have effectively purchased a section of the market....And switch everyone to Embeda. This type of thing is the future of PM.
Thank you for sharing in my joy! Leslie, I miss you! I'm glad to see someone that is taking my body seriously and following the pain to see what it tells him. We have thought long that the SI was my biggest problem. My PM at Mayo thought this but could get no one to listen and I've shared that with every doc since. No one cared or believed it or did any exam and testing to even look into it. I do feel like I am in excellent hands now. I'm so comfortable in his presence and trust him completely. Not something I have every felt in a first visit, much less several years of visits. I'm concerned with the comments from Ex about the Embeda though. I'm glad the pharmacy can't get it until next week. I see the doc again Tuesday and plan to discuss it with him in greater detail.
Lisa, I am so happy for you, you seem to have achieved a comfort level wit this new Dr., and that is a wonderful thing....we have to put our confidence in our Drs., and TRUST them....good for you!!! I know nothing about the new med...but I know that you will research it fully!!! Again...that is important.... Feel better...