- Messages
- 581
- Reaction score
- 0
- Points
- 0
I honestly don't remember if I updated you on this but as I said awhile back, I went to my Neurologist about my vibrating foot. He said it could be Tarsal Tunnel Syndrome which is like Carpal Tunnel only in the ankle. He did a test and found out it was Neuropathy and it's not just mild, it's very significant. Anyway, he prescribed Nortriptyline to calm the nerves in my leg and foot and it seems to help. He then ordered bloodwork to see if he could find out anything that way and it came back that I had an abnormal protein called the M protein in my blood. So he sent me to a Hematologist for further testing to find out if it was anything serious.
He put me through some tests like bloodwork, a urinalysis and then wanted to do a bone biopsy and the first one was a flop because being ill equipped and in my opinion dumb, he didn't have the right needle so he sent me to a surgeon who did what is called a fat pad biopsy. He seemed to think it's a disease called Amyloidosis which is a condition that can turn into cancer and what not and the protein fights against the immune system and can destroy it cause it takes it over.
The Fat Pad Biopsy was NEGATIVE, so he did another Bone Biopsy and thank goodness he had the right stuff this time. It took FORTY FIVE MINUTES. He took fluid and bone to test it. He wasn't going to be in the office until tomorrow. However, I had a followup appointment with the Neurologist today and this is how it went, this is long, bear with me.
Neurologist Appointment May 30th
UPDATE: I saw my Neurologist today and this time there were no tests, we just talked. Anyway, he asked me questions like how I’m doing, asked if the meds were working to control the Neuropathy symptoms and I said the Neuropathy is a lot better and the meds help it a lot. The vibrations aren’t near as frequent unless I do a lot of walking or stand on my feet all day. He said if it does become out of control, there are other medicines that will help but for now he’s not going to change anything being I’m already on a lot of medicines.
He said it is possible that with all the stuff I had going on at the time of my second kidney failure, then the brain hemorrhage could be related to the Neuropathy. He didn’t seem to think the high potassium was related to the brain bleed though but possible that it can have to do with the Neuropathy however, he seems to think that it’s related in part to my Cardiomyopathy. There is a Neuropathy called Cardio Neuropathy and it would make sense cause the Neuropathy is on the same side as my heart.
He also said that it’s rare for dehydration to cause a brain bleed, that occurs mostly with infants. Anyway, he said that since I have such extensive Neuropathy, it could be related to all my illnesses.
He asked me about the appointment with the Hematologist and I told him about that doctor not having the right sized needle and after putting me through that, he said he didn’t have a long enough needle. Dr Riess seemed to find that amusing, not cause of me but cause of him. Lol I didn’t say that I didn’t find it amusing at all. Lol.
Anyway, I told him I had a fat pad biopsy and that was negative and had the second Bone Biopsy on the 23rd and I didn’t have results yet so he LOOKED on his computer and he HAD THE RESULTS. He said “I hate to steal his thunder but it says IT SHOWS NO EVIDENCE OF AMYLOIDOSIS WOOHOOO. NONE in the Fat Pad Biopsy and NONE in the Bone Marrow Biopsy. YESSSSS!!!
I told him that is great. He said it can appear in scant amounts in the bone marrow but this showed NO EVIDENCE of it. I told him I was glad he told me cause I was anxious about it. The Hematologist will call me of course but I know ahead of time. Hehe. Dr Riess said there is a Nerve biopsy we can do and a piece of Nerve is taken out of the FOOT? OUCH!
However, he said it would make it hard to walk and it would leave me with permanent numbness in my foot so we’re not going to do that unless absolutely necessary. This is SUCH a relief. I told him that the Hematologist seemed convinced it was related to all my illnesses but he didn’t think so and neither had I. I will talk to the Hematologist about it but Dr Riess beat him to the punch. Lol I love Dr Riess, he’s a great doctor and in my mind, knows more than that Hematologist. He just said that as far as the protein goes, just have to watch it to make sure it doesn’t do anything but he didn’t seem all that concerned. I have more concern with the Neuropathy than that. I feel better now. Thank goodness.
:clap::clap::clap:
He put me through some tests like bloodwork, a urinalysis and then wanted to do a bone biopsy and the first one was a flop because being ill equipped and in my opinion dumb, he didn't have the right needle so he sent me to a surgeon who did what is called a fat pad biopsy. He seemed to think it's a disease called Amyloidosis which is a condition that can turn into cancer and what not and the protein fights against the immune system and can destroy it cause it takes it over.
The Fat Pad Biopsy was NEGATIVE, so he did another Bone Biopsy and thank goodness he had the right stuff this time. It took FORTY FIVE MINUTES. He took fluid and bone to test it. He wasn't going to be in the office until tomorrow. However, I had a followup appointment with the Neurologist today and this is how it went, this is long, bear with me.
Neurologist Appointment May 30th
UPDATE: I saw my Neurologist today and this time there were no tests, we just talked. Anyway, he asked me questions like how I’m doing, asked if the meds were working to control the Neuropathy symptoms and I said the Neuropathy is a lot better and the meds help it a lot. The vibrations aren’t near as frequent unless I do a lot of walking or stand on my feet all day. He said if it does become out of control, there are other medicines that will help but for now he’s not going to change anything being I’m already on a lot of medicines.
He said it is possible that with all the stuff I had going on at the time of my second kidney failure, then the brain hemorrhage could be related to the Neuropathy. He didn’t seem to think the high potassium was related to the brain bleed though but possible that it can have to do with the Neuropathy however, he seems to think that it’s related in part to my Cardiomyopathy. There is a Neuropathy called Cardio Neuropathy and it would make sense cause the Neuropathy is on the same side as my heart.
He also said that it’s rare for dehydration to cause a brain bleed, that occurs mostly with infants. Anyway, he said that since I have such extensive Neuropathy, it could be related to all my illnesses.
He asked me about the appointment with the Hematologist and I told him about that doctor not having the right sized needle and after putting me through that, he said he didn’t have a long enough needle. Dr Riess seemed to find that amusing, not cause of me but cause of him. Lol I didn’t say that I didn’t find it amusing at all. Lol.
Anyway, I told him I had a fat pad biopsy and that was negative and had the second Bone Biopsy on the 23rd and I didn’t have results yet so he LOOKED on his computer and he HAD THE RESULTS. He said “I hate to steal his thunder but it says IT SHOWS NO EVIDENCE OF AMYLOIDOSIS WOOHOOO. NONE in the Fat Pad Biopsy and NONE in the Bone Marrow Biopsy. YESSSSS!!!
I told him that is great. He said it can appear in scant amounts in the bone marrow but this showed NO EVIDENCE of it. I told him I was glad he told me cause I was anxious about it. The Hematologist will call me of course but I know ahead of time. Hehe. Dr Riess said there is a Nerve biopsy we can do and a piece of Nerve is taken out of the FOOT? OUCH!
However, he said it would make it hard to walk and it would leave me with permanent numbness in my foot so we’re not going to do that unless absolutely necessary. This is SUCH a relief. I told him that the Hematologist seemed convinced it was related to all my illnesses but he didn’t think so and neither had I. I will talk to the Hematologist about it but Dr Riess beat him to the punch. Lol I love Dr Riess, he’s a great doctor and in my mind, knows more than that Hematologist. He just said that as far as the protein goes, just have to watch it to make sure it doesn’t do anything but he didn’t seem all that concerned. I have more concern with the Neuropathy than that. I feel better now. Thank goodness.
:clap::clap::clap: