Joined
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30 Posts
Hi Everyone, wasn't sure where to post this, hope I picked the right category.
The frustration continues.
I had one pred pulse (didn’t have the cyclophosphamide yet), but still have bad pain right side of neck, rt chest, rt arm, terrible burning, etc. Saw Neuro, but he hadn't received the Rheumy's referral, she still hadn't prepared it by the day of my app't, and I had to be the one to suggest they get the office to fax the report she'd sent to my GP. Then he didn't agree with some of her assessment, although I don't think he took into account improvements that might have occurred due to having the pulse therapy a week prior. He was so focused on whether or not my reflexes were depressed, and didn't take time to assess my pain, (that I have always felt might be something in and of itself, separately needing to be assessed). He did note some left-sided weakness and referred for MRI, but this is 6-8 wk wait. He just said he had no explanation for my pain and if the MRI doesn’t find anything, then he thinks my doctor should check my heart............I can't believe that.......wait until after the MRI to check my heart? and I was at a loss, felt defeated and didn't have energy to pursue or argue. So once again, my concerns were not addressed.
I spoke to my Rheumy via phone after that (she is in city 3 hours drive) to find out the next step, as my GP doesn't take any initiative and hasn't even read the report she sent to him on Jan 10, the day I saw her. She told me in a snarky tone "you can't push the doctors", and that I just had to wait. I couldn't believe this. I have gone from being a hard working productive, contributing member of society, to being unable to work, and this health system is content to let me sit there, sick, waiting for months as they take their time, doing one test at a time. It seems like my Rheumy has decided the right-sided pain was due to CNS effects of Lupus, and so there is no thinking into whether there could be another cause, and in the meantime nothing gets resolved.
So I saw my GP again, and asked him, “are you sure this right-sided pain couldn’t be from an injury ?” “Yes, it could be a brachial plexus injury”, he said in such a matter-of-fact tone, I was stunned. So why wasn’t this being investigated further, I don’t get it. So finally, he said he would refer me for nerve conduction studies, but when I checked a few days later, his staff nurse said he hadn’t even made a note to do the referrals. Can’t push the doctors??? If you don’t, nothing gets done!
Sometimes I could just cry, I feel so much like I’m hung out to dry and facing so many obstacles. I have no help, and I sometimes just don’t have the strength to push things anymore. My family doesn’t seem to think my situation warrants coming out to help me, and my friends, although helpful, have full time jobs and their own lives to lead/problems to handle. Last week my dog (13 ½ year old Golden Retriever, “Teak”) had a sudden serious illness (vascular event) and for a couple of days, it seemed likely she would die, so I was dealing with that as well. Fortunately (I am so thankful, I cannot even say) she has recovered remarkably well, however she now needs substantially more care.
In the meantime, while all of this was going on, there was an interesting development. A couple weeks ago, I received a phone call from a Doc who took over patients from a former GP of mine who moved to another province. His office informed me that they had just received a result from a thyroid ultrasound I’d had some time ago and that he wanted to discuss it with me. I had since found a GP closer to where I was living and working and that GP had told me the results were insignificant and the subject had been dropped. Not wanting to involve yet another doctor, I initially declined an appointment, but last week decided to go. I saw him last Wed, and he told me that the nodules on my thyroid warranted investigation and that I should have had a thyroid scan. He asked a lot of questions about family history, etc, and the discussion naturally led to the pain I was having and some of the investigations that had been done. He took a copy of the last report from my Rheumy, and sent me right away for a chest xray and thyroid blood tests. He said he wanted another opinion on this right-sided neck/arm pain and he was going to refer me to a general surgeon, as well as referring me for the thyroid scan.
And so, I am hopeful (but scared to hope) that this other doctor will be the one to take interest, think outside of the box, and search to find the cause of this pain. I am not certain what he is thinking, but my educated guess is that he thinks my thyroid is a possible cause of the pain. I am happy to let him set up any investigations he feels are needed, I really need someone who will take charge and sort this out. I’m not ready to drop my current GP, but I will follow up with the new guy and see what he has to offer. I need his help.
Well, I have gone on enough and my body is suffering the consequences of sitting this long in front of the PC. I just really needed to rant, as I have no one who will listen and provide me with any emotional support.
If you can all just keep your fingers crossed for me that this new GP will come through for me and I will get some answers. In some senses, at least I now have confirmation that I do have Lupus, but there are still unanswered questions and I don’t feel certain yet that the Lupus is the cause of this additional pain (I have never had this with previous flares). I need this figured out, so I can get proper treatment.
Jennifer
The frustration continues.
I had one pred pulse (didn’t have the cyclophosphamide yet), but still have bad pain right side of neck, rt chest, rt arm, terrible burning, etc. Saw Neuro, but he hadn't received the Rheumy's referral, she still hadn't prepared it by the day of my app't, and I had to be the one to suggest they get the office to fax the report she'd sent to my GP. Then he didn't agree with some of her assessment, although I don't think he took into account improvements that might have occurred due to having the pulse therapy a week prior. He was so focused on whether or not my reflexes were depressed, and didn't take time to assess my pain, (that I have always felt might be something in and of itself, separately needing to be assessed). He did note some left-sided weakness and referred for MRI, but this is 6-8 wk wait. He just said he had no explanation for my pain and if the MRI doesn’t find anything, then he thinks my doctor should check my heart............I can't believe that.......wait until after the MRI to check my heart? and I was at a loss, felt defeated and didn't have energy to pursue or argue. So once again, my concerns were not addressed.
I spoke to my Rheumy via phone after that (she is in city 3 hours drive) to find out the next step, as my GP doesn't take any initiative and hasn't even read the report she sent to him on Jan 10, the day I saw her. She told me in a snarky tone "you can't push the doctors", and that I just had to wait. I couldn't believe this. I have gone from being a hard working productive, contributing member of society, to being unable to work, and this health system is content to let me sit there, sick, waiting for months as they take their time, doing one test at a time. It seems like my Rheumy has decided the right-sided pain was due to CNS effects of Lupus, and so there is no thinking into whether there could be another cause, and in the meantime nothing gets resolved.
So I saw my GP again, and asked him, “are you sure this right-sided pain couldn’t be from an injury ?” “Yes, it could be a brachial plexus injury”, he said in such a matter-of-fact tone, I was stunned. So why wasn’t this being investigated further, I don’t get it. So finally, he said he would refer me for nerve conduction studies, but when I checked a few days later, his staff nurse said he hadn’t even made a note to do the referrals. Can’t push the doctors??? If you don’t, nothing gets done!
Sometimes I could just cry, I feel so much like I’m hung out to dry and facing so many obstacles. I have no help, and I sometimes just don’t have the strength to push things anymore. My family doesn’t seem to think my situation warrants coming out to help me, and my friends, although helpful, have full time jobs and their own lives to lead/problems to handle. Last week my dog (13 ½ year old Golden Retriever, “Teak”) had a sudden serious illness (vascular event) and for a couple of days, it seemed likely she would die, so I was dealing with that as well. Fortunately (I am so thankful, I cannot even say) she has recovered remarkably well, however she now needs substantially more care.
In the meantime, while all of this was going on, there was an interesting development. A couple weeks ago, I received a phone call from a Doc who took over patients from a former GP of mine who moved to another province. His office informed me that they had just received a result from a thyroid ultrasound I’d had some time ago and that he wanted to discuss it with me. I had since found a GP closer to where I was living and working and that GP had told me the results were insignificant and the subject had been dropped. Not wanting to involve yet another doctor, I initially declined an appointment, but last week decided to go. I saw him last Wed, and he told me that the nodules on my thyroid warranted investigation and that I should have had a thyroid scan. He asked a lot of questions about family history, etc, and the discussion naturally led to the pain I was having and some of the investigations that had been done. He took a copy of the last report from my Rheumy, and sent me right away for a chest xray and thyroid blood tests. He said he wanted another opinion on this right-sided neck/arm pain and he was going to refer me to a general surgeon, as well as referring me for the thyroid scan.
And so, I am hopeful (but scared to hope) that this other doctor will be the one to take interest, think outside of the box, and search to find the cause of this pain. I am not certain what he is thinking, but my educated guess is that he thinks my thyroid is a possible cause of the pain. I am happy to let him set up any investigations he feels are needed, I really need someone who will take charge and sort this out. I’m not ready to drop my current GP, but I will follow up with the new guy and see what he has to offer. I need his help.
Well, I have gone on enough and my body is suffering the consequences of sitting this long in front of the PC. I just really needed to rant, as I have no one who will listen and provide me with any emotional support.
If you can all just keep your fingers crossed for me that this new GP will come through for me and I will get some answers. In some senses, at least I now have confirmation that I do have Lupus, but there are still unanswered questions and I don’t feel certain yet that the Lupus is the cause of this additional pain (I have never had this with previous flares). I need this figured out, so I can get proper treatment.
Jennifer