I was wondering myself if my 25 years of being on Metaprolol might be causing or contributing to my strange neurologcal symptoms.
I just had a small nerve fiber biopsy done yesterday at USF in Tampa FL after I pushed my neurologist from Tampa to finally request this biospy be done. After seeing this neurologist for over one year and only learning about this small fiber biopsy on this Mayo blog I then requested my neurologist to do this biopsy as a process of elimination. He said he did NOT do this test and had to refer me out to a neurologist that did.
I just had the biopsy done 3 days ago and she said it could take 2 to 3 weeks. Problem is my neurologist that the results were sent to, the neurologist I had a beg for over 1 and 1/2 years to do this test only to find out he did not do it and he had to refer me out to another neurologist in Tampa etc, those results will be forwarded to him and he never ever uploads any of my results to my patient portal nor does his office ever call to give me results. I will once again have to call his office and try to get the results of this test from what the doctor in Tampa USF told me this week it could take 2 to 3 weeks.
@joannemm30809 My biopsy was sent to New York from Florida. It took 3 weeks. Why not request a form to get your results from the Dr. that did the biopsy? You have that right. Tell them you are keeping a file on everything regarding your health because you are seeing other doctors and it would help to make it easier. I do know how frustrating it is not to have answers. I think I stay frustrated. I am sorry to hear the issues you are having. I hope the results come back sooner for you.
I just had the biopsy done 3 days ago and she said it could take 2 to 3 weeks. Problem is my neurologist that the results were sent to, the neurologist I had a beg for over 1 and 1/2 years to do this test only to find out he did not do it and he had to refer me out to another neurologist in Tampa etc, those results will be forwarded to him and he never ever uploads any of my results to my patient portal nor does his office ever call to give me results. I will once again have to call his office and try to get the results of this test from what the doctor in Tampa USF told me this week it could take 2 to 3 weeks.
It’s a law in NC now for results to be immediately released (or available) for patients electronically. You may have to see it via a patient portal or email, so a signup is involved. We (now) almost always get lab and other procedure reports before the doctor has time to review and plan out next steps if needed, before calling. So we must be courteous and respect the timeline the doctor gave so they can manage the care of their entire patient load; but at least you have the report and can followup when the time window expires, since unfortunately critical test results sometimes fall through the cracks with even the supposedly most reputable hospitals and doctors. I thought it was Federal Law to let patients get results now, but you can check your state’s. And for those who think it’s insensitive or traumatizing to read test results vs waiting for their doctors to call them, there’s supposed to be options to make sure you don’t get your results directly.
@joannemm30809 My biopsy was sent to New York from Florida. It took 3 weeks. Why not request a form to get your results from the Dr. that did the biopsy? You have that right. Tell them you are keeping a file on everything regarding your health because you are seeing other doctors and it would help to make it easier. I do know how frustrating it is not to have answers. I think I stay frustrated. I am sorry to hear the issues you are having. I hope the results come back sooner for you.
I did ask her if I could get a copy of results and she said she was sending results to my neurologist who referred me to her. Its upsetting that these doctors provide these patient portals yet some doctors, like my neurologist, never uploads any of my results to my portal even though I repeatedly ask him to. I feel he just thinks I have anxiety and that's why he appears to me to be very lax and nonchalant about my health concerns.
Many doctors too even when being told by the patient how their nonstop debilitating symptoms are destroying their life, quality of life etc,, they still act nonchalant and say 'well, come back in six months and let's see how you are doing', even though they know you've been suffering for two years etc. Or they schedule tests that are three to six months out or they drag their feet in doing tests as a process of elimination like this Small Nerve Fiber skin biopsy that one of my neurologist should have already done by now over these past 2.5 years.
Why is it that so many patients like me with chronic nonstop debilitating and frightening symptoms are blown off by their doctors OR these specialists want to blame it all on anxiety??
I am totally dismayed and disgusted with far too many doctors that think nothing of dragging out a patients misery and pain for years or they refuse to look at anything else for the cause of these symptoms except anxiety and they quickly want to put you on antidepressants and refer you out to a Psychiatrist.
That's insulting to me.
I did ask her if I could get a copy of results and she said she was sending results to my neurologist who referred me to her. Its upsetting that these doctors provide these patient portals yet some doctors, like my neurologist, never uploads any of my results to my portal even though I repeatedly ask him to. I feel he just thinks I have anxiety and that's why he appears to me to be very lax and nonchalant about my health concerns.
Many doctors too even when being told by the patient how their nonstop debilitating symptoms are destroying their life, quality of life etc,, they still act nonchalant and say 'well, come back in six months and let's see how you are doing', even though they know you've been suffering for two years etc. Or they schedule tests that are three to six months out or they drag their feet in doing tests as a process of elimination like this Small Nerve Fiber skin biopsy that one of my neurologist should have already done by now over these past 2.5 years.
Why is it that so many patients like me with chronic nonstop debilitating and frightening symptoms are blown off by their doctors OR these specialists want to blame it all on anxiety??
I am totally dismayed and disgusted with far too many doctors that think nothing of dragging out a patients misery and pain for years or they refuse to look at anything else for the cause of these symptoms except anxiety and they quickly want to put you on antidepressants and refer you out to a Psychiatrist.
That's insulting to me.
I just posted this a few minutes ago in response to someone else. Unless you have a treatable cause for your neuropathy, neurologists can only offer the same old worn out regimens in the hopes that something help you. You are right about a skin biopsy being done a long time ago. Many people have great experiences with spinal cord stimulation. Unfortunately it didn’t help me. Good luck!
I was diagnosed with Idiopathic Small Fiber Neuropathy (ISFN) 6 years ago. I have been to the Mayo Clinic in Rochester, University of Alabama in Birmingham, and Piedmont Hospital in Atlanta. I have had 3 skin biopsies, numerous MRI’s, Nerve Conduction studies, EMG’S, numerous sympathetic nerve blocks, epidurals, a spinal cord stimulator and a DRG stimulator. I have taken every drug that’s indicated for neuropathic pain. I have had EXTENSIVE blood work that is totally normal. The only abnormal tests were the skin biopsies with gave me the diagnosis of ISFN.
If your neuropathy is idiopathic. I would encourage you to see a pain specialist about spinal cord stimulation. Learn everything you can! As I have said before, medicine has failed those suffering with neuropathy. They do plenty of clinical trails, that produce absolutely nothing in terms of effective treatment. Think about it, two very popular drugs for neuropathy, gabapentin and Lyrica started out with an indication for seizures, and they have been out for years. We have had nothing new of any significance to treat neuropathy for many years.
I did ask her if I could get a copy of results and she said she was sending results to my neurologist who referred me to her. Its upsetting that these doctors provide these patient portals yet some doctors, like my neurologist, never uploads any of my results to my portal even though I repeatedly ask him to. I feel he just thinks I have anxiety and that's why he appears to me to be very lax and nonchalant about my health concerns.
Many doctors too even when being told by the patient how their nonstop debilitating symptoms are destroying their life, quality of life etc,, they still act nonchalant and say 'well, come back in six months and let's see how you are doing', even though they know you've been suffering for two years etc. Or they schedule tests that are three to six months out or they drag their feet in doing tests as a process of elimination like this Small Nerve Fiber skin biopsy that one of my neurologist should have already done by now over these past 2.5 years.
Why is it that so many patients like me with chronic nonstop debilitating and frightening symptoms are blown off by their doctors OR these specialists want to blame it all on anxiety??
I am totally dismayed and disgusted with far too many doctors that think nothing of dragging out a patients misery and pain for years or they refuse to look at anything else for the cause of these symptoms except anxiety and they quickly want to put you on antidepressants and refer you out to a Psychiatrist.
That's insulting to me.
After 5 years, an Integrative Medicine doctor recommended Acupuncture. I thought “Why Not?” Since we’re not doing anything else (I haven’t been able to get a SFN skin biopsy ordered me, or an MRI, so I understand your frustration). I had my first Acupuncture session last week. They told me we need 4 sessions to determine how it’s working for me. But I’ll say, I had some pleasant changes in feeling after my first visit, so I’m staying optimistic, as I head to my 2nd session today! (My insurance doesn’t cover, and I know we’ve all spent a lot of money on our illness, but I’m willing to try it for $60)
After 5 years, an Integrative Medicine doctor recommended Acupuncture. I thought “Why Not?” Since we’re not doing anything else (I haven’t been able to get a SFN skin biopsy ordered me, or an MRI, so I understand your frustration). I had my first Acupuncture session last week. They told me we need 4 sessions to determine how it’s working for me. But I’ll say, I had some pleasant changes in feeling after my first visit, so I’m staying optimistic, as I head to my 2nd session today! (My insurance doesn’t cover, and I know we’ve all spent a lot of money on our illness, but I’m willing to try it for $60)
Anyone with burning from SFN had a PET/CT ? Did it make the burning worse? Thank you in advance to anyone who will respond. I'm going for the test on Monday with great apprehention.
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What did the biopsy reveal?
Yes, I would like to know the same thing.
I just had the biopsy done 3 days ago and she said it could take 2 to 3 weeks. Problem is my neurologist that the results were sent to, the neurologist I had a beg for over 1 and 1/2 years to do this test only to find out he did not do it and he had to refer me out to another neurologist in Tampa etc, those results will be forwarded to him and he never ever uploads any of my results to my patient portal nor does his office ever call to give me results. I will once again have to call his office and try to get the results of this test from what the doctor in Tampa USF told me this week it could take 2 to 3 weeks.
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1 Reaction@joannemm30809 My biopsy was sent to New York from Florida. It took 3 weeks. Why not request a form to get your results from the Dr. that did the biopsy? You have that right. Tell them you are keeping a file on everything regarding your health because you are seeing other doctors and it would help to make it easier. I do know how frustrating it is not to have answers. I think I stay frustrated. I am sorry to hear the issues you are having. I hope the results come back sooner for you.
It’s a law in NC now for results to be immediately released (or available) for patients electronically. You may have to see it via a patient portal or email, so a signup is involved. We (now) almost always get lab and other procedure reports before the doctor has time to review and plan out next steps if needed, before calling. So we must be courteous and respect the timeline the doctor gave so they can manage the care of their entire patient load; but at least you have the report and can followup when the time window expires, since unfortunately critical test results sometimes fall through the cracks with even the supposedly most reputable hospitals and doctors. I thought it was Federal Law to let patients get results now, but you can check your state’s. And for those who think it’s insensitive or traumatizing to read test results vs waiting for their doctors to call them, there’s supposed to be options to make sure you don’t get your results directly.
I did ask her if I could get a copy of results and she said she was sending results to my neurologist who referred me to her. Its upsetting that these doctors provide these patient portals yet some doctors, like my neurologist, never uploads any of my results to my portal even though I repeatedly ask him to. I feel he just thinks I have anxiety and that's why he appears to me to be very lax and nonchalant about my health concerns.
Many doctors too even when being told by the patient how their nonstop debilitating symptoms are destroying their life, quality of life etc,, they still act nonchalant and say 'well, come back in six months and let's see how you are doing', even though they know you've been suffering for two years etc. Or they schedule tests that are three to six months out or they drag their feet in doing tests as a process of elimination like this Small Nerve Fiber skin biopsy that one of my neurologist should have already done by now over these past 2.5 years.
Why is it that so many patients like me with chronic nonstop debilitating and frightening symptoms are blown off by their doctors OR these specialists want to blame it all on anxiety??
I am totally dismayed and disgusted with far too many doctors that think nothing of dragging out a patients misery and pain for years or they refuse to look at anything else for the cause of these symptoms except anxiety and they quickly want to put you on antidepressants and refer you out to a Psychiatrist.
That's insulting to me.
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Helpful -
Hug
2 ReactionsJoannemm,
I just posted this a few minutes ago in response to someone else. Unless you have a treatable cause for your neuropathy, neurologists can only offer the same old worn out regimens in the hopes that something help you. You are right about a skin biopsy being done a long time ago. Many people have great experiences with spinal cord stimulation. Unfortunately it didn’t help me. Good luck!
I was diagnosed with Idiopathic Small Fiber Neuropathy (ISFN) 6 years ago. I have been to the Mayo Clinic in Rochester, University of Alabama in Birmingham, and Piedmont Hospital in Atlanta. I have had 3 skin biopsies, numerous MRI’s, Nerve Conduction studies, EMG’S, numerous sympathetic nerve blocks, epidurals, a spinal cord stimulator and a DRG stimulator. I have taken every drug that’s indicated for neuropathic pain. I have had EXTENSIVE blood work that is totally normal. The only abnormal tests were the skin biopsies with gave me the diagnosis of ISFN.
If your neuropathy is idiopathic. I would encourage you to see a pain specialist about spinal cord stimulation. Learn everything you can! As I have said before, medicine has failed those suffering with neuropathy. They do plenty of clinical trails, that produce absolutely nothing in terms of effective treatment. Think about it, two very popular drugs for neuropathy, gabapentin and Lyrica started out with an indication for seizures, and they have been out for years. We have had nothing new of any significance to treat neuropathy for many years.
-
Like -
Helpful -
Hug
3 ReactionsAfter 5 years, an Integrative Medicine doctor recommended Acupuncture. I thought “Why Not?” Since we’re not doing anything else (I haven’t been able to get a SFN skin biopsy ordered me, or an MRI, so I understand your frustration). I had my first Acupuncture session last week. They told me we need 4 sessions to determine how it’s working for me. But I’ll say, I had some pleasant changes in feeling after my first visit, so I’m staying optimistic, as I head to my 2nd session today! (My insurance doesn’t cover, and I know we’ve all spent a lot of money on our illness, but I’m willing to try it for $60)
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Hug
1 ReactionI did try acupuncture but it did not work. I put out several hundred dollars with no improvement.
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4 ReactionsAnyone with burning from SFN had a PET/CT ? Did it make the burning worse? Thank you in advance to anyone who will respond. I'm going for the test on Monday with great apprehention.