MRI is scheduled! I get the neck MRI done next friday, with the follow up appt with ortho DR on Tuesday June 10. Hopefully from there we can figure out best way to heal neck quickly!
Nothing else new to report today. Pain and everything else same as last night. Did finally manage to sleep. And getting the call today for the ortho office so quickly about the MRI goes a long way towards mentally making me feel better. Actually the ortho doctor and his staff have been the ones who have helped the most in this whole thing. Still waiting to hear back from neurology doctor but trying to be patient. =)
Friday, May 30, 2014
Patience is a virtue, or so I've been told...
So you would think after all this time I would be good at the waiting game, right? Yea, not so much. First I did get a call from the neurologist I want to switch to and am just waiting for him to sign off on taking me, so fingers crossed!! So I did physical therapy on Wednesday for my neck, at first I thought it went good. She messaged the muscle and my range of motion opened up some and she gave me a couple of exercises to do at home. Then that night the pain kicked back in but like ten times worse to the point where I was up most of the night throwing up from it. I have more pain in my left arm now and keep losing feeling in it then I did before the therapy. And I went all day today with my face feeling like it was asleep. Sure your thinking, Becky maybe it was just tired from being up all night throwing up! But seriously, I have had these symptoms for weeks now and never have they lasted for this long of a period, it's really really scary. So the ortho Dr had said to call if the therapy didn't help or made the pain worse. So I called, and he ordered an mri. Now of course the insurance has to approve it and they may not because I didn't give the therapy long enough of a try but seriously I don't intend to do therapy and then spend that night up in pain throwing up, know what I mean? Plus here I sit not throwing up but in pain still. So we wait to find out if I can get the mri. Patience!
And speaking of pain, cause well my life does revolve around it. So my headache's are at their best (if you can call it best) when I am lying down. On the old scale of 1 to 10 it is generally a 2 to 3 when I am lying down. When I first wake up in the morning for that first minute or so a 1 or a 2 if I am lucky. But the minute I get up bam the headache pain shoots up and is worse when standing compared even to sitting. And here is where the fun for me comes in. Since doing the therapy my entire left side hurts more when I am lying down. I would put it on a pain scale tonight of about a 9 to 10. So do I sit up with a headache that right now is inching into a 10 or lay down with side pain, face, arm, ribcage, and shoulder blade area that is also in the 9 to 10 pain range. I could try crying, but that makes everything hurt. Of course the dog doesn't have a problem sleeping she is snoring away, lucky! At least my Bosco has just come to sit with me, his purring is calming anyway!!
And speaking of pain, cause well my life does revolve around it. So my headache's are at their best (if you can call it best) when I am lying down. On the old scale of 1 to 10 it is generally a 2 to 3 when I am lying down. When I first wake up in the morning for that first minute or so a 1 or a 2 if I am lucky. But the minute I get up bam the headache pain shoots up and is worse when standing compared even to sitting. And here is where the fun for me comes in. Since doing the therapy my entire left side hurts more when I am lying down. I would put it on a pain scale tonight of about a 9 to 10. So do I sit up with a headache that right now is inching into a 10 or lay down with side pain, face, arm, ribcage, and shoulder blade area that is also in the 9 to 10 pain range. I could try crying, but that makes everything hurt. Of course the dog doesn't have a problem sleeping she is snoring away, lucky! At least my Bosco has just come to sit with me, his purring is calming anyway!!
Tuesday, May 27, 2014
Here we go again....
I sometimes feel I am living a soap opera. I know I wanted to write for them, not live one! So on Friday I had an appt with my orthopedic specialist for my herniated discs. They seem to be doing better, so that something. I showed him my swollen left arm, he begins to exam it and told him my neurologist ruled out a pinched nerve. Ortho asked if neuro did an mri of neck and I said no, ortho then said "then he couldn't have completely ruled it out." Okay then. So he took x-rays of my neck and sure enough just from the x-rays he can tell I have deterioration. He wants to try physical therapy first to see if that helps, if it doesn't then he will order an mri of my neck. Yay another test!!! In the meantime I kind of told him about what was going on headache wise and asked if he could recommend a neurologist here in town. He did. Of course the one he recommended is part of the same group I go to, cause life can't be easy can it? So I call to try and switch to this doctor. Well you guessed it, can't just switch on your own. I was told I had to write to the administrator and it could take two to three weeks. When your head feels like it has men with jack-hammers in it day in and day out two to three weeks is a lifetime, not to mention your disability is hanging on a tiny tiny thread. So of course I go into tiny panic attack number, I don't even know what number I've lost track of them lately. Once I calm down I decide to call the admin, can't hurt to call, right? Didn't even think I would get through to be honest, but I did. He answered his phone! I explained my situation, he gave me his email so I could write to him that way and get the process started sooner. He also said it wouldn't take two to three weeks. He didn't guarantee I would get to switch but fingers crossed because I CAN NOT go back to my neurologist, I just can't.
So today I go to see my gp doctor to discuss this "referral" my neuro wanted him to do. There seemed to be some confusion. My gp thought my neuro doctor was referring me to a different neurologist down at IU Med, because whatever is wrong with me is more then my neurologist can deal with (that much I agree with!) where my neurologist told me he wanted my gp to refer me to someone at IU med or the Mayo clinic because I could have some rare disease like Lyme disease. The look on my gp's face when I said Lyme disease was kind of funny! I told my gp about trying to switch neurologists based on my ortho doctors recommendation and he told me to keep pushing on that. Had me schedule an appt for in a week and we would go from there if needed. He did agree that since this is day 59 of this headache, it is not just a migraine like my neurologist keeps telling me. So between my orthopedic doctor and my gp doctor I am feeling better. I also feel better because I have some very good friends both near and far who have all reached out to me in various ways and your love and prayers mean more to me then words could ever ever say!!
So today I go to see my gp doctor to discuss this "referral" my neuro wanted him to do. There seemed to be some confusion. My gp thought my neuro doctor was referring me to a different neurologist down at IU Med, because whatever is wrong with me is more then my neurologist can deal with (that much I agree with!) where my neurologist told me he wanted my gp to refer me to someone at IU med or the Mayo clinic because I could have some rare disease like Lyme disease. The look on my gp's face when I said Lyme disease was kind of funny! I told my gp about trying to switch neurologists based on my ortho doctors recommendation and he told me to keep pushing on that. Had me schedule an appt for in a week and we would go from there if needed. He did agree that since this is day 59 of this headache, it is not just a migraine like my neurologist keeps telling me. So between my orthopedic doctor and my gp doctor I am feeling better. I also feel better because I have some very good friends both near and far who have all reached out to me in various ways and your love and prayers mean more to me then words could ever ever say!!
Thursday, May 22, 2014
No where to turn!
So today is headache day 54. Doesn't even matter anymore. We will start with Tuesday. I went in for an appointment with my neurologist only to find out my appointment had either been canceled or vanished from the system. I'm still not sure exactly what happened. I went in today for tests because I am still losing feeling in my fingers and toes, as well as my cheeks and lips. All at random times. He wanted to make sure I didn't have a pinched nerve or inflammation somewhere. I didn't. Every test he has run has come back normal. As far as he is concerned this is just a migraine and I just have to deal with it. I have to wait for the medication to work. The medication I have already been taking for six weeks. While each day I get worse and worse. Here is how it all breaks down in order of how I noticed the symptoms.
- Headache
- tastebuds off when drinking anything carbonated
- tingling feeling in fingers/toes followed by numbess
- extreme pain in back of head
- pain between shoulder blades
- pain in left shoulder down into arm
- lips and cheeks numbness
- muscle spasms back of head down neck in shoulder-blades down into back area
- left arm swelling, getting a little worse every day
So now he says the headache is just a migraine and he can't explain the other stuff and I should see my family doctor so he can refer me to a specialist down in say Indy or maybe even the Mayo clinic where they deal in little know illness like I may have. Because I so can afford to drive all over the country trying to figure out what obscure disease I may have. Never mind I asked him about checking to see if I had a csf leak because a lot of the symptoms I have are similar to a csf leak and he point blank told me I can't have one and he would not test for one. When I asked about getting a second opinion he first said it was my right but he then later told me he would not give me a name of a person to go to. So I sit here crying not knowing where to turn. According to him I have to return to work in two weeks even though I am barely functioning. Not having any answer as to what is wrong with me and not believing for one second that for all of these days I have been dealing with a migraine. I am beyond upset and don't know where to turn or even who to turn to.
- Headache
- tastebuds off when drinking anything carbonated
- tingling feeling in fingers/toes followed by numbess
- extreme pain in back of head
- pain between shoulder blades
- pain in left shoulder down into arm
- lips and cheeks numbness
- muscle spasms back of head down neck in shoulder-blades down into back area
- left arm swelling, getting a little worse every day
So now he says the headache is just a migraine and he can't explain the other stuff and I should see my family doctor so he can refer me to a specialist down in say Indy or maybe even the Mayo clinic where they deal in little know illness like I may have. Because I so can afford to drive all over the country trying to figure out what obscure disease I may have. Never mind I asked him about checking to see if I had a csf leak because a lot of the symptoms I have are similar to a csf leak and he point blank told me I can't have one and he would not test for one. When I asked about getting a second opinion he first said it was my right but he then later told me he would not give me a name of a person to go to. So I sit here crying not knowing where to turn. According to him I have to return to work in two weeks even though I am barely functioning. Not having any answer as to what is wrong with me and not believing for one second that for all of these days I have been dealing with a migraine. I am beyond upset and don't know where to turn or even who to turn to.
Friday, May 9, 2014
Just..I don't know....
Today is headache day 41. But it isn't even just the headache anymore. It's so much of everything. I am having the headache which isn't as bad in the morning but is worse as the day goes on. Especially if I am doing any kind of walking. Like going to doctors appointments. When I get home I am just in so much pain. My head is throbbing and I am having all these muscle spasms in the back of my head down my neck and in my shoulders. I am having this pain in my back between my shoulder blades. My fingers and toes keep getting this tingly feeling and like losing feeling. My face, my cheeks and lips get numb. And now my back hurts from the spinal tap that didn't actually go well. And the more I think about that the more depressed I get. And I keep getting more depressed because I am blaming myself for it failing. He kept telling the nurse he needed a longer needle. Maybe if I wasn't so friggen fat he wouldn't have had so much trouble doing the stupid spinal tap. So I sit here crying. I am crying because I just hurt, I hurt everywhere and they can't seem to make the pain go away. I am crying because no matter what I do I can't lose weight. I had lost 50 pounds and even though I haven't changed anything, heck I was even moving around more with the type of work I am doing and yet I have gained back so much of it. I sit here crying because my disability is still pending. I sit here crying because either I won't ever be able to go back to work, or I will but I will still be in pain and I will just have to try and find a way to work through it even though I get so dizzy when I am walking and have blurred/double vision when I am walking. But I have to earn money to pay the bills. And they can't figure out what is wrong with me. I'm just sad and frustrated and lonely and I miss David more then ever right now! 
Monday, May 5, 2014
Happy Cinco de Mayo!
Or as I prefer to call it headache day 37! 
So I went to the ENT doctor today. I was not referred to him. Went on my own, after having multiple sinus and ear infections last year. I am glad I made the decision. He feels the ear infections are a by product of the sinus infection and that the sinus infections have not been treated properly. To many antibiotics given over to long a period. So he is giving me stronger antibiotic and I am going to take it for the next 28 days. After that he is having another CT scan done to see if there is any signs of a residual infection. If there is then we will have to do something else to get rid of it. If there isn't then hopefully I won't be dealing with them as often as I have been these past few years. He also said something about the fluid coming out of my nose maybe or maybe not being spinal fluid. I told him I had a spinal tap scheduled for Wednesday and he wants a copy of those results. So I told him I would make sure to let my neuro Dr know to send him a copy. While what we dealt with today will do nothing to help overall with the current headaches I am dealing with it will help to deal with a lot of the illness' I was dealing with last year. I missed a lot of time from work because of my sinus' so this is a big step towards helping to help me and make my bosses happier with me!
So I went to the ENT doctor today. I was not referred to him. Went on my own, after having multiple sinus and ear infections last year. I am glad I made the decision. He feels the ear infections are a by product of the sinus infection and that the sinus infections have not been treated properly. To many antibiotics given over to long a period. So he is giving me stronger antibiotic and I am going to take it for the next 28 days. After that he is having another CT scan done to see if there is any signs of a residual infection. If there is then we will have to do something else to get rid of it. If there isn't then hopefully I won't be dealing with them as often as I have been these past few years. He also said something about the fluid coming out of my nose maybe or maybe not being spinal fluid. I told him I had a spinal tap scheduled for Wednesday and he wants a copy of those results. So I told him I would make sure to let my neuro Dr know to send him a copy. While what we dealt with today will do nothing to help overall with the current headaches I am dealing with it will help to deal with a lot of the illness' I was dealing with last year. I missed a lot of time from work because of my sinus' so this is a big step towards helping to help me and make my bosses happier with me!
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