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Ming's(Michele) Update

MingMMing Posts: 1,127
edited 06/11/2012 - 8:27 AM in Chronic Pain
Hey Guys,

I thought I would give you guys and update. I haven't posted any of my own stuff lately, just replying to others. I was just in chat by accident and couldn't beleive how many people were awake.

Let me start by saying I love you guys and am so glad that I found this site. It's help me in so many ways.

I feel like I am on the brink of a nervous breakdown at this point. I finally had my appt with the new neurologist on Friday. It was a complete waste of time and I left crying hysterically. Thank goodness I was able to reach my dad by phone because he helped calm me down so I could drive home. This neuro doesn't specialize in spine, doesn't prescribe pain meds and can't do anything with out EMG. I already knew this so I tried to get my primary doc to order one before I see this guy so he will have the results. I wasted a month waiting for this appt thinking this was the answer.

Now I hurry up and wait until Feb 11th comes and I have EMG. He said I will have the results at that time but said I should consider seeing a spine specialists....duh...you think L) I was so discouraged, disappointed and upset. I was hoping this guy was going to be the answer to my prayers and he's just a nightmare. He did the pricking me with a pin test and I didn't hurt on the tops of my feet. I didn't feel the prick until he got to my ankles. This was very scary as I know this can be a sign of nerve damage. The only thing running through my mind at this point is peripheral neuropathy which my father has and is in a wheelchair.

I just kept thinking, is this how my life is going to be. I'm 31 and I want to be able to do the things I used to. How can I do this with nerve damage. I am stressing over this so much and I haven't even had the nerve test done.

Now I am on antoher search to find a spine specialist and see if my primary doc will fill my prescriptions because he only gave me enough until I had this appt Friday. He was hoping this guy would take over my meds. I have to talk to my primary this week to see what to do about that.

In addition to all of this, my gma has stage IV non-small cell lung cancer in both lungs and has been given apprx 8 months to live. My uncle is supposed to take care of her affairs but lives in VA so asked me to help him get as much info as I can since I know the most about insurance and estates etc in our family. My cousin, her boyfriend and their 2 1/2 yr old live with my gma. They are supposed to be helping her out but are completely lazy. They are in their early 20's. I had a huge fight with cousin's BF today because the house is such a mess, gma is not getting her hair washed, clothes or bedding washed as well as her body. I talked to hospice to have them do this but they thought my cousin would be doing it since she said she was. She lied to hospice and now I am dealing with this.

All of this stress has really taken a toll on me. I am having severe muscle spasms and have taken max dose of everything I have including some things I have that were given to me to try (I know that I'm not supposed to do this but I was desperate). So now I am wide awake in excrutiating muscle spasm and back, leg pain right now and all I want to do is go to bed.

I am sorry for the long post. I just wanted those who have been there through all of this with me to know why I haven't been on much and to know what's going on with me.

I still try to log on and help out newcomers and read the new posts but not as often. I'm still waiting for all the meds I've taken within the last 2 hours to kick in but they haven't.

Thanks SH for always being there for me :X


  • I had a pain mgmt doc and he said he can't do anything more for me after the SI joint injection last month didn't work so I went back to square one because my ortho surgeon said he did all he can do too.

    These docs don't understand how much it takes out of us to get up, get showered, dressed. I have to drive 30 mins one way to any appt I go to which is painful. Sit in a waiting room forever to find out it was a waste of time. That's why I cried so hard. I was in pain from him making me move around and from driving and from being upset about results. The more stressed I am, the more I hurt. That's why I am having such aweful muscle spasms.

    That and I had to bend and twist to wash and cut my grandma's hair.
  • I wrote down 3 different docs that I want my primary to pick from for referral. 2 are neurosurgeons and one is orthopedic. I don't think I need surgery though so would I still consider an orthopedic or neurosurgeon if it's nerve damage? I am going to look into another pain management doc. I hate going through the same crap each month to get my refills.

    Thanks for responding so quickly. Like I said, I am so surprised there are so many on this time of night. I am hoping I will be able to sleep soon.
  • I'm so sorry - I totally understand about breaking down because of stupid doctors. When this happened to me, I was still in the room and my husband was beside himself. The nurse came in and acted like she was used to patients falling apart, lol, and I later found out he comes across that way all the time. Great!! lol

    So you saw a neurologist? I was sent to a neurologist for my EMG. Glad to see you will try to see a neurosurgeon - neurosurgeon's are "doers" and neurologists are "thinkers". This was just explained to me by an internal medicine doc. Good to know!

    I'm sorry about your gma too, that must be so frustrating knowing that situation. Shame on those who live with her. HOw sad and depressing for your gma.

    Take care,

  • I will post more to you after while...I have a lot to say and I hope that I can be of some help to you.

    My heart truly feels for you right this minute.With all that you are going through.....and you ARE going through some issues that are going to make your pain even worse.Emotions really DO play a part in our pain levels (as I'm sure you know).There will be times when you may forget why you are hurting so much because...it's going to be very hard to keep track of where/when/why/how your pain is coming from and the levels in the next few months are going to be a roller coaster.

    I'm not trying to scare you-only help,but please take care of yourself ASAP and find a new Dr to treat your pain.Time has a way of creeping up on us...it's already Feb 1st.

    My mom was diagnosed with stage IV non-small cell lung cancer last year-on Feb 14th.She wasn't even sick.I'm so sorry that your grandmother has to fight this terrible disease.

    My prayers are with your family and your grandmother during this difficult time.
  • Hi Ming, I am sorry for all your pain and frustration. No one understands this Spiney life unless they have been through it. Perhaps look for a physiatrist who specializes in pain management. We have several in my town who do injections, acupuncture, AND prescribe pain meds. My pain doc is an anesthesiologist, he does injections and prescribing as well. I have noticed here on SH some pain docs only do injections, and do not prescribe pain meds. Perhaps that is the case with the one you had. It also seems the PMD's are reluctant to treat people with chronic pain. I think they are afraid of the narcotics and the liability. I hope you can find some help soon. Take care, >:D< Cali-Sue
  • hang in there girl!!
    you can always email me if you want a 1 2 1 at anytime i know how bad things can get..and sometimes its good just to let off some steam..with out fear of embarrassment .i am up most nights.i am on e MSN and face book .if you go on face book i am the Anthony beer in a grey suit stood next to kathryn {redhead} .keep on going its not easy / as you know
  • Sweetie, I can understand what you are going through. To tell you the truth many of us went and go through same thing to find a good DR. Dr who will be compassion, who will understand... But not always happens.
    May I ask you why are you talking about permanent nerve damage? I can share some things with you about neuropathy.
    After I had my first major spinal surgery I woke up to a nurse and my surgeon on a second day after surgery touching my toes, feet and asking me to move them. There are no movement in my right foot and very little in my left.
    To make long story short: I got dropped foot right after surgery, permanent neuropathy. I had all total 8 EMG tests done. I wouldn't rush to conclusion if I would be you before this test is done. This tests results are usually given to you right there, so you will know exactly what is going on that day.
    I understand your frastrution. Can you imagine a surgeon, who was nominated one of the 10 best spinal surgeons in US totally ignores all signs of neuropathy and dropped foot? I was going to him telling him about my symptoms, falling down because no feelings in my feet, etc. he would say: what do you want? you had a major surgery.
    This was until I went to see second opinion in NYC. I brought back to him my first EMG test results and dx: permanent nerve damages, full right dropped foot and partially left dropped foot. Worse than I anticipated.
    He did not look at that paper even, saying that I still have time to recover.
    I left him right there and than. He may be a good surgeon even though some people may say how can he be good if you got so many damages. I say this to them: spinal surgeries are very complicated and dangerous due to a lots of spinal nerves involved, and more complicated surgery-more damages may happen. I had a very extensive one so I don't blame him for this, I blame him for not admitting, for not sending me to Neurologist right the way, his ego was bigger than bed side manners he suppose to have.
    Fortunately, we have so many good DR in US, I am in such good hands right now, a great team of Drs work on me now, I can't be happier. It took a lot of research, a lot of time to finally find who I really like, but I done it! Make sure your spinal surgeon has to have Fellowship in Spinal Surgeries - don't just pick an Ortho surgeon who does from soup to nuts. He has to specialize in spinal surgeries.

    I also strongly suggest: before you make an app with a new DR, check him out. I done it through Internet, all their specialties, what they train in, how many similar surgeries do they do a year and so on. I go for my app fully prepared. I write down my symptoms, all questions I want to ask and so on. This is very important.
    And don't hesitate go and see another opinion if you are not satisfied. This is very important.

    For your 30 you have your hands full and I believe you are very good person to care about it all. This is life, honey, unfortunately. I also believe that doesn't matter how bad our experiences can be - it makes us stronger, better...
    Best of luck to you. I know you are stronger than you think, you will do it, girl!
  • I'm so sorry that he disappointed you so much. But don't you fret young lady. There is a doctor out there somewhere who will figure this out for you and get you headed down the right path. I'm glad to hear that you are considering seeing a new PM and new docs too.
    I'm also very sorry to hear about the issues with your Grandmother. Kids in their 20's think they rule the world and really don't know much. I know because I have one. I can't believe that hospice care would even consider leaving her in their care. Why are they even living there if they aren't really helping? Sounds like you've been too burdened by all of this. Just try to remember to take care of yourself since you only have one you and a lot of people counting on you. Don't let all of this make you depressed. Remember that we are all here for you and you can come vent to us anytime. Day or night. Sometimes you can even find me here after midnight when I can't sleep. Just wish I had been here when you needed help the most. Oh and mention to your GP about reaching the point of having a nervous breakdodwn. They can help you with that. I actually pay to talk to a counsellor about my wreck although I don't know why because I have some really great friends right here who give some really great support, like you for instance. Let us know if there is anything we can do to help and keep us updated on your doctor's appointments.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I'm so sorry all this is happening to you. I'm not on here as much as I have been in the past. But I've read many of your posts and your too nice of a person to have all of this happen to you. I can't add to the excellent advice that you have already got. But I can tell your a strong person. Hang in there girl. Things will get better. Follow the advice you've been given.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I am so sorry. I don't know what else to day other than that.
  • they are all right. You are a very good person and that will come back to you. I know that it seems that it is the good people that get crapped on but I really think that it does come back to us. I am so sorry about your gma. I hope that you can get hospice back in there to help with her. Throw those other lazy bums out!
  • I'm sorry you're getting the runaround from these doctors. Someone needs to step up and take command of your treatment instead of saying, "not me".

    The situation with your grandma strikes a cord with me. I went through the same thing about family neglecting both my grandparents. We're a big family, but there are some who were too far to do anything about it. The relatives in charge of her isolated her so that the rest of us were cut off. Unfortunately she passed away, and then my grandpa shortly after. Lawyers were involved and a lot of fighting. Now I have disowned half of my family and can't wait for them to rot in hell for what they did to my grandparents. I will never forget or forgive. How can someone do this to their own parents who brought them in this world?

    Please don't give up Michelle, you are a strong woman with a kind and giving heart who is always there for everyone else in their time of need. I pray you find a good specialist who will do anything to get you feeling better. I wish they wouldn't put you through that nerve conduction test because it's unpleasant. You really need to get in with a neurosurgeon and a PM doctor, and they both can coordinate your care. I'm not saying you shouldn't have the EMG/NCT, I just want you to get in with a doctor who will start treatment ASAP.

    I have also found that when I feel stressed out, the pain shoots up. I am sorry to hear about your grandma and she deserves the best pampering and care in the world. I know you love her dearly and she will appreciate anything you're able to do for her.
  • I am so sorry for everything you are going through. I agree with the excellent advice the others have given. You must take care of yourself!
    Remember that we ae all here for you & would do whatever we can to help you! >:D< You are more than welcome to PM me or a lot of others, I'm sure if you need to.

  • I am sorry for everything you are going through. I agree that you need a pain management doctor to script your meds every month. I especially feel bad about your grandma. It has to be so difficult for you, esp being in pain yourslf.

    Fused L2-3 to S1 and at C5-6. I have a central herniation @ T11-12 and multiple bulging discs in my thoracic. I also have fibromyalgia and suspected arachnoiditis, awaiting my results of a recent MRI.
  • just wanted to stop by and give you a hug.
    i know all to well everyone says find a new PM dr or this and that. well its not that easy in some states and areas.
    only because i am going through it at this moment.
    next time im asking all questions on the phone before i even commit to an appt. because i also hate getting there waiting a month or more for them to say there is nothing i can do "because"
    ya think PM would be goverment ran in each state.
    its so odd and frustrating to myself that one state or city has the perfect drs and give out meds like candy, and the next state your lucky to get a injection. or you end up to a trip to the ER even with proof of surgery, mri's , ct scans etc etc etc etc.
    just watch yourself as i have myself hurting more right now from stress also. it does things to our whole body that we are unaware of at the time or do not even think about..

    you hang in there hun alot of us have been in your position or worse...

    lots of love and huggies
  • I just want to thank all of you guys for your responses and PM's. I am so grateful to have SH in my life :X It really is truly great to get on here and be able to connect with people who understand, support and care for others. What a loving community we have in SH >:D<

    I am so glad to hear from you and hope you are doing well. I remember your if I don't do it, who will very clearly and that is exactly how I feel. I hope you are well and home from hospital and healing well and feeling so much better.

  • I had an appt with my primary doc yesterday. I explained my frustrations with waiting a month to find out this neuro couldn't help me other than doing the EMG. I am not looking forward to going through that next week but am glad to be making progress and hope they can rule out nerve damage as the cause.

    I talked to my primary about switching my pain meds to something longer lasting and how the skelaxin is not always cutting it for my muscle spasms. He wrote a script for 10mg 2x per day of oxycontin. I am waiting for pharmacy to get prior auth to fill it so I haven't started yet. He also put me on 10mgs 3xs per day of flexerol for the muscle spasms which seem to be helping better than the skelaxin.

    The doc is also sending me to one of the best neurosurgeons in our area and he actually accepts my insurance. I am waiting for my ortho to send over my files to the neuro and then they will set up an appt.

    I finally feel like I am making progress. Thanks for all of your support and for being there for me.
  • I disagree with this statement,and actually find it offensive.
    its so odd and frustrating to myself that one state or city has the perfect drs and give out meds like candy
    Perfect Drs don't 'give out' meds like candy-IMO.It bothers me that some people think that only good Drs give pain meds,or the meds that a person decides is right for them.Frustration though has a way of causing it's own pain.

  • I'm glad that you are making progress.I get the muscle spasms too,really bad when my back/neck gets even a chill-and the flexeril should help you.They work pretty good-especailly with a heat pad...awesome relief!

    Thinking of you and hoping you are having a peaceful day.
  • Can you remind me, you had surgery recently?

    My "gut" feel is that you are perhaps expecting too much too soon. I am 24 months from my first surgery. I am still in terrible pain. I have had unusual complications.
    That aside, it takes ages. I know! lol!
    "itsalongwalk" and if only I had known when i used that name! rofl!

    You say about numbness on your foot?
    Is this new from surgery?

    I am gonna try and find your story on the boards but PM me will be easier...I have been to PM docs who treated me like your doc. I too cried from despair. I now know that it means your problems are beyond their technical capability, and you need to find someone else. It doesn't mean there is nothing to be done.

    Keep going and I hope you find some releif soon!
  • I had EMG yesterday and the neuro said there is no evidence of nerve damage or impingement. I was so releived to hear that. I am waiting for my ortho to send copies of my file to neurosurgeon and then get into to see him. I asked my primary to refer me to this neurosurgeon cuz he is one of the best in the area and deal directly with spinal issues including DDD, failed back syndrome etc.

    I had ALIF L5/S1 on 7/1/08. Most of my issues and the procedures I've had done are in my signature. I agree with you, I do set my expectations too high and am getting frustrated that I can't do what I had set for my goals as far as walking for any length of time, going back to work etc. The numbness in my feet and legs is new since surgery. It started about 3 months after surgery. i get the pins and needles feeling too.

    Thanks for your advice. They actually changed up my med and put me on 15 mg MSContin and 7.5/200mg vicoprofen for breakthru. I don't plan on upping the dosage as I would like to get off this crap and start feeling better. MSContin makes me tired and I sleep about 3hr after each dose. I take one in the morning and one in the evening. I haven't been exercising lately. Those exercises I was doing were setting my back into spasms. I also had a bad flare up on Monday. I was skooching my butt out of the bar stool at home and when my feet hit the floor I was bent over in pain like I was when I had my flare ups before surgery. It hurt so bad and it still does off and on but seems to be getting better.

    Well, I better go cuz I gotta get kids up in morning to get them ready for school.

    Good night to allmy spineys and hope you have a wonderful valentines day if I don't chat with you before then. I haven't been on here as much lately due to family issues, muscles and flare ups. I hope to get back on here more often to help out any one I can.
  • Glad to hear you are doing better. You are so strong to go through all this and already weaning down on pain meds.

    It was a huge relief to me and my family to hear no nerve damage, especially my father. He was very happy as we both feared that I may have inherited his peripheral neuropathy.

    I have parked the bat mobile and fusion fighter has put up her orthotic superwoman boots up until I feel better =))

    Hubby is taking me on a surprise date tonight for Valentine's... :jawdrop: yes you heard me right...it was hubby's idea lol. I will report back tomorrow.

    Take Care Zach. It is always nice to hear from you too. I hope you are getting Joy :X something very nice for valentine's. Maybe a certificate for a massage or facial or something that she can do to relax and let someone pamper her. Happy Valentine's Day. I hope you two have a great day tomorrow :D
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