Gingergrrl
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How are you doing @Belbyr? Have you learned anything new from the hematologist?
My first visit to see Dr Klimas and team (Success in the End)
- Thread starter Belbyr
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Tests are still showing abnormalities, bone marrow biopsy is on Monday. He said it would be about a week after that to get the results. The nephrologist said there is a tiny amount of protein in the urine but it's not a bad protein. I'm not sure what that means exactly... She wants me to send her the results of the bone marrow biopsy. She said I don't have the MGUS proteins.
My dad just had his colon surgery we are waiting on results to see if the cancer had spread outside the colon while he recovers in the hospital. I can't remember if I mentioned that earlier in the thread or not. It's been a hell of a year.
My dad just had his colon surgery we are waiting on results to see if the cancer had spread outside the colon while he recovers in the hospital. I can't remember if I mentioned that earlier in the thread or not. It's been a hell of a year.
Gingergrrl
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Best wishes for your bone marrow biopsy and that is good news that you do not have the MGUS proteins. I did not have them either (when we tested me at the end of 2017 after several years of elevated IgM).
My dad just had his colon surgery we are waiting on results to see if the cancer had spread outside the colon while he recovers in the hospital. I can't remember if I mentioned that earlier in the thread or not. It's been a hell of a year.
I don't think you mentioned that before about your dad. My mom passed away from colon cancer and please feel free to PM me if I can provide any info or support. I am sending positive energy and prayers for your dad.
Zebra
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Hi @Belbyr.
I thank you for keeping us informed of your journey. I had a similar GREULING schedule of traveling for appointments, invasive testing, trips to the ER, and lots of objective medical abnormalities with no unifying diagnosis.
I have 2 or 3 ideas I'd like to share with you, just based on my experience with severe GI dysmotility and terrible abdominal pain. However, I understand you need to have a bone marrow biopsy, await results, and possible follow up. And, I am sorry to hear that your father is very ill as well.
I will try to keep tabs on your thread to see how you are doing and if I can be of any help in the GI/abdominal pain area of your very complex illness!
I, truly, wish you and your father the best of luck.
Zebra
I thank you for keeping us informed of your journey. I had a similar GREULING schedule of traveling for appointments, invasive testing, trips to the ER, and lots of objective medical abnormalities with no unifying diagnosis.
I have 2 or 3 ideas I'd like to share with you, just based on my experience with severe GI dysmotility and terrible abdominal pain. However, I understand you need to have a bone marrow biopsy, await results, and possible follow up. And, I am sorry to hear that your father is very ill as well.
I will try to keep tabs on your thread to see how you are doing and if I can be of any help in the GI/abdominal pain area of your very complex illness!
I, truly, wish you and your father the best of luck.
Zebra
Thanks Zebra. Bone marrow biopsy is now done and awaiting results. I have been in some pretty serious pain from it (I'm trying to not take anything for it) and my other symptoms have been flaring pretty bad due to all the stress, odd scheduling, and just trying to push through for my family.
I would be interested in your ideas, feel free to post here or send me a message. I will update here when I get results back.
I would be interested in your ideas, feel free to post here or send me a message. I will update here when I get results back.
Zebra
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Hey @Belbyr.
I was rereading your thread and I am so glad you had the esophageal manometry testing done!
It may not seem like it, but your esophageal dysmotility is an important medical finding and should serve as a strong clue to your medical team. (Ditto for the results from your PH impedence study.)
Do you have the actual report generated from the EM test, or just the doctor's interpretation?
I ask because my first EM was misinterpreted, so I was initially misdiagnosed and mistreated.
I now obtain reports from every single procedure I have so I can review them myself and ask questions about abnormalities that sometimes get overlooked or not communicated to the patient.
Also, do you have a primary physician who is serving as the touch point for this widespread work up? That is supposed to be a PCP's job, but that may just be wishful thinking on my part.
Please keep us posted in all things.
Best wishes,
Z
I was rereading your thread and I am so glad you had the esophageal manometry testing done!
It may not seem like it, but your esophageal dysmotility is an important medical finding and should serve as a strong clue to your medical team. (Ditto for the results from your PH impedence study.)
Do you have the actual report generated from the EM test, or just the doctor's interpretation?
I ask because my first EM was misinterpreted, so I was initially misdiagnosed and mistreated.
I now obtain reports from every single procedure I have so I can review them myself and ask questions about abnormalities that sometimes get overlooked or not communicated to the patient.
Also, do you have a primary physician who is serving as the touch point for this widespread work up? That is supposed to be a PCP's job, but that may just be wishful thinking on my part.
Please keep us posted in all things.
Best wishes,
Z
Zebra
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Hi, @Belbyr!
Thanks for letting me you have your reports, and yes, the dysmotility could be neurological or neuromuscular. (And then the next hurdle would be to diagnose the disease process causing neurological and/or neuromuscular symptoms.)
I first experienced severe esophageal dysmotility in 2014, which seemed to come out of NO WHERE and within 4 to 6 weeks I lost the ability to swallow solids and then liquids. I don't share that information to scare you, but rather to establish that I was HIGHLY motivated to get to the bottom of my condition so that it could be improved.
Please double check me on this, but my understanding is that the upper part of your esophagus is striated muscle tissue, and the lower part is smooth muscle tissue. (Weird, right?) Your report from the EM, should pinpoint the affected area. The report should also state the pressures of your upper and lower esophageal sphincters, which would be good to know as well.
In your thread you have made mention of many abnormal test results, and I have what might seem like an odd suggestion. I hope you don't mind.
As I progressed on my medical/diagnostic oddessy, my neuro suggested I create a list of medical abnormalities, which I categorized by bodily system. My list only included true objective medical and lab test abnormalities. I did not include "subjective" symptoms, which are often dismissed by some physicians.
This may seem like an arduous task, but having everything in one place does come in handy, especially if you are exhausted by the time you get to your many medical appointments.
Also, you just never know which physician might be curious enough to step outside their narrow specialty and take a look at the whole medical picture and really try to pull all this information together.
Best wishes,
Z
Thanks for letting me you have your reports, and yes, the dysmotility could be neurological or neuromuscular. (And then the next hurdle would be to diagnose the disease process causing neurological and/or neuromuscular symptoms.)
I first experienced severe esophageal dysmotility in 2014, which seemed to come out of NO WHERE and within 4 to 6 weeks I lost the ability to swallow solids and then liquids. I don't share that information to scare you, but rather to establish that I was HIGHLY motivated to get to the bottom of my condition so that it could be improved.
Please double check me on this, but my understanding is that the upper part of your esophagus is striated muscle tissue, and the lower part is smooth muscle tissue. (Weird, right?) Your report from the EM, should pinpoint the affected area. The report should also state the pressures of your upper and lower esophageal sphincters, which would be good to know as well.
In your thread you have made mention of many abnormal test results, and I have what might seem like an odd suggestion. I hope you don't mind.
As I progressed on my medical/diagnostic oddessy, my neuro suggested I create a list of medical abnormalities, which I categorized by bodily system. My list only included true objective medical and lab test abnormalities. I did not include "subjective" symptoms, which are often dismissed by some physicians.
This may seem like an arduous task, but having everything in one place does come in handy, especially if you are exhausted by the time you get to your many medical appointments.
Also, you just never know which physician might be curious enough to step outside their narrow specialty and take a look at the whole medical picture and really try to pull all this information together.
Best wishes,
Z
Zebra
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Widespread autonomic dysfunction.
Cause of dysautnomia? Unknown.
Might be my ME/CFS. Might be a pre-existing condition.
Good luck to you.
Cause of dysautnomia? Unknown.
Might be my ME/CFS. Might be a pre-existing condition.
Good luck to you.
Zebra
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@Belbyr.
I feel very ill today, so I am not at my best.
What I *should* have said in my previous post is that I feel confident that you will obtain a more precise diagnosis than I have, thus far.
You have accumulated a lot of objective medical abnormalities that will eventually be explained by one or more diagnoses.
I look forward to the day you are able to post that news on PR.
Z
I feel very ill today, so I am not at my best.
What I *should* have said in my previous post is that I feel confident that you will obtain a more precise diagnosis than I have, thus far.
You have accumulated a lot of objective medical abnormalities that will eventually be explained by one or more diagnoses.
I look forward to the day you are able to post that news on PR.
Z
BeADocToGoTo1
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That is good news. Hopefully you will get an answer on the others symptoms soon too.
Gingergrrl
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Great news @Belbyr and I’m so glad your bone marrow biopsy was normal. Hopefully this entire mystery will be solved and you are one step closer with each thing you rule out.
I agree, my GP asked me if I ever had a muscle biopsy before which I have not. She was running down the line of my symptoms and we concluded that about 90-95% of my symptoms involve muscles whether it be skeletal and/or smooth muscle. She is thinking it's autoimmunity but not sure to what... The hematologist thought the same when he said 'if' you are negative for cancer, we need to see some really forward thinking immunologist.
Followed up with the hematologist. Confirmed all clear on cancer. He doesn't have anything else to offer right now. Even though IGG and IGM are low he still does not feel IVIG can be approved since we still do not have a hard line diagnosis. He is 50/50 on it helping or not.
He mentioned a Dr. Abell that is now in Kentucky who has taken a big interest in motility disorders and autoimmune illnesses that cause them. I've always wondered about the nerves/muscles of my GI tract, wished a biopsy could be done to see but apparently they are invasive?
I've had some more bad days again lately. Been curled up on the floor for hours a day and night in agonizing pain, nausea, and feeling really really weak. I just don't know anymore... Might call back down to NOVA to tell them, "the abnormal blood work is not due to cancer, so now what?"
He mentioned a Dr. Abell that is now in Kentucky who has taken a big interest in motility disorders and autoimmune illnesses that cause them. I've always wondered about the nerves/muscles of my GI tract, wished a biopsy could be done to see but apparently they are invasive?
I've had some more bad days again lately. Been curled up on the floor for hours a day and night in agonizing pain, nausea, and feeling really really weak. I just don't know anymore... Might call back down to NOVA to tell them, "the abnormal blood work is not due to cancer, so now what?"
BeADocToGoTo1
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One other test to consider if not already is GI Map by Diagnostic Solutions. It is a stool test.
https://www.diagnosticsolutionslab.com/sites/default/files/u16/GI-MAP-Interpretive-Guide.pdf
https://www.diagnosticsolutionslab.com/sites/default/files/u16/GI-MAP-Interpretive-Guide.pdf
Is there harm in applying for IVIG from an insurance standpoint? It helps in autoimmunity and low IGG. The dose is more powerful in Auto. vs low IGG. It could be given by a nurse at home at a slow rate with a lower dose.
I'm sorry you are in so much pain.
I'm sorry you are in so much pain.
Gingergrrl
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Even though there is not a firm diagnosis, was that doctor considering IVIG for autoimmunity or immune deficiency (or both)? I wasn't sure if I understood.
Would the biopsy be done w/endoscopy or colonoscopy or a more invasive surgery? Do you know what they would be looking for?
I would do this and I think they should know that cancer has now been ruled out and if they have any other ideas.
I don't see how it would harm and worst case scenario is that insurance says no (which they are going to say no regardless of anything from my experience) and then you appeal the denial.