Sign-in to Ask A Doctor - 24x7
OR
Sign in with Google
Disorders Of The Heme System...Are There Any %E2%80%9Crare%E2%80%9D Conditions That
Question: disorders of the heme system...Are there any %E2%80%9Crare%E2%80%9D conditions That involve elevated D dimer, elevated B6, low red blood cells, neurological %E2%80%9Cepisodes%E2%80%9D(periods of confusion, possible hallucination, clumsy walking, like a drunk) livedo and that will change your in color once exposed to sunlight? I asked for rare conditions because we have not been able to find the answer through regular testing. picture of urine after 5 hrs if sun exposure.
disorders of the heme system...Are there any %E2%80%9Crare%E2%80%9D conditions That involve elevated D dimer, elevated B6, low red blood cells, neurological %E2%80%9Cepisodes%E2%80%9D(periods of confusion, possible hallucination, clumsy walking, like a drunk) livedo and that will change your in color once exposed to sunlight? I asked for rare conditions because we have not been able to find the answer through regular testing. picture of urine after 5 hrs if sun exposure.
Brief Answer:
Considerations
Detailed Answer:
Hello and thanks for sending the query.
Yours is a challenging situation.
D-Dimer is very very non-specific. Elevation of D-Dimer can reflect active inflammation, blood clotting disorder or possibly many other pathologic issues. It has to be taken in the context of what is going on.
You mention "low red blood cells". I would need to see a complete CBC report to comment on that.
Elevated B6 also needs to be taken in the context of another laboratory testing in your case.
Neurologic episodes and livedo are also somewhat non-specific - there are so many disorders which may manifest with neurologic changes or livedo.
I would like to review some labs if you have them available. Ideally, if you could collate your labs into one PDF file and upload them this might help in terms of diagnostic considerations.
I appreciate that you are dealing with a stressful and debilitating condition. I hope that we can work on a path of understanding for you so that you may achieve optimal health.
Sincerely,
Dr. Galamaga
Considerations
Detailed Answer:
Hello and thanks for sending the query.
Yours is a challenging situation.
D-Dimer is very very non-specific. Elevation of D-Dimer can reflect active inflammation, blood clotting disorder or possibly many other pathologic issues. It has to be taken in the context of what is going on.
You mention "low red blood cells". I would need to see a complete CBC report to comment on that.
Elevated B6 also needs to be taken in the context of another laboratory testing in your case.
Neurologic episodes and livedo are also somewhat non-specific - there are so many disorders which may manifest with neurologic changes or livedo.
I would like to review some labs if you have them available. Ideally, if you could collate your labs into one PDF file and upload them this might help in terms of diagnostic considerations.
I appreciate that you are dealing with a stressful and debilitating condition. I hope that we can work on a path of understanding for you so that you may achieve optimal health.
Sincerely,
Dr. Galamaga
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
Brief Answer:
Considerations
Detailed Answer:
Hello and thanks for sending the query.
Yours is a challenging situation.
D-Dimer is very very non-specific. Elevation of D-Dimer can reflect active inflammation, blood clotting disorder or possibly many other pathologic issues. It has to be taken in the context of what is going on.
You mention "low red blood cells". I would need to see a complete CBC report to comment on that.
Elevated B6 also needs to be taken in the context of another laboratory testing in your case.
Neurologic episodes and livedo are also somewhat non-specific - there are so many disorders which may manifest with neurologic changes or livedo.
I would like to review some labs if you have them available. Ideally, if you could collate your labs into one PDF file and upload them this might help in terms of diagnostic considerations.
I appreciate that you are dealing with a stressful and debilitating condition. I hope that we can work on a path of understanding for you so that you may achieve optimal health.
Sincerely,
Dr. Galamaga
Considerations
Detailed Answer:
Hello and thanks for sending the query.
Yours is a challenging situation.
D-Dimer is very very non-specific. Elevation of D-Dimer can reflect active inflammation, blood clotting disorder or possibly many other pathologic issues. It has to be taken in the context of what is going on.
You mention "low red blood cells". I would need to see a complete CBC report to comment on that.
Elevated B6 also needs to be taken in the context of another laboratory testing in your case.
Neurologic episodes and livedo are also somewhat non-specific - there are so many disorders which may manifest with neurologic changes or livedo.
I would like to review some labs if you have them available. Ideally, if you could collate your labs into one PDF file and upload them this might help in terms of diagnostic considerations.
I appreciate that you are dealing with a stressful and debilitating condition. I hope that we can work on a path of understanding for you so that you may achieve optimal health.
Sincerely,
Dr. Galamaga
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
I have all Medical records listed on the site called picnic health. they are an online gathering system for patients records. We use this when applying with the UnDiagnosed network. you can see there has been quite an extensive list of testing done. currently there are three working theories of possibilities.
-porphyria%E2%80%99s
-sneddons syndrome
-ahus
to access the records through this link you only need DOB
05/11/1951
https:/pic.nc/sh/c2f176d27246ae
-porphyria%E2%80%99s
-sneddons syndrome
-ahus
to access the records through this link you only need DOB
05/11/1951
https:/pic.nc/sh/c2f176d27246ae
I have all Medical records listed on the site called picnic health. they are an online gathering system for patients records. We use this when applying with the UnDiagnosed network. you can see there has been quite an extensive list of testing done. currently there are three working theories of possibilities.
-porphyria%E2%80%99s
-sneddons syndrome
-ahus
to access the records through this link you only need DOB
05/11/1951
https:/pic.nc/sh/c2f176d27246ae
-porphyria%E2%80%99s
-sneddons syndrome
-ahus
to access the records through this link you only need DOB
05/11/1951
https:/pic.nc/sh/c2f176d27246ae
Brief Answer:
Followup
Detailed Answer:
Thank you. This website asks for a login and password which I do not have. If you would like to share that with me I would be happy to check it out.
Dr Galamaga
Followup
Detailed Answer:
Thank you. This website asks for a login and password which I do not have. If you would like to share that with me I would be happy to check it out.
Dr Galamaga
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
Brief Answer:
Followup
Detailed Answer:
Thank you. This website asks for a login and password which I do not have. If you would like to share that with me I would be happy to check it out.
Dr Galamaga
Followup
Detailed Answer:
Thank you. This website asks for a login and password which I do not have. If you would like to share that with me I would be happy to check it out.
Dr Galamaga
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
sorry Dr XXXXXXX that the link did not take you directly there.
login
YYYY@YYYY
password
Blue77836%23
login
YYYY@YYYY
password
Blue77836%23
sorry Dr XXXXXXX that the link did not take you directly there.
login
YYYY@YYYY
password
Blue77836%23
login
YYYY@YYYY
password
Blue77836%23
Brief Answer:
Followup
I was finally able to access your data.
I am impressed that your doctors have searched far and wide to determine a cause for your constellation of symptoms.
Unfortunately the lab results do not reveal a definitive causative disorder or factor.
You have been extensively tested. A specific test for the very rare porphyria disroder could be a consideration but this test needs to be performed very carefully so as to assure that the result is accurate.
Often, if a patient has an unexplained disorder I will try to take them off of all medications for a "drug holiday". This has to be done under close supervision of your doctor, however. Then your doctor can determine if the medications are contributing.
There may be a deeper neuropsychiatric issue at play here - something that would fall under the expertise of a neurologist or neuropsychologist.
I do not otherwise see evidence of a purely hematologic disorder here.
The elevated D-Dimer is non-specific - it can reflect anything from inflammation to infection to blood clot or other disorder which is why it is usually only ordered if there is a high index of suspicion of an active blood clot.
Again, I can appreciate that you are dealing with a frustrating issue in terms of your health and encourage you to continue to followup - especially with your primary doctor who is th "quarterback" of your overall care.
Sincerely,
Dr. Galamaga
Followup
I was finally able to access your data.
I am impressed that your doctors have searched far and wide to determine a cause for your constellation of symptoms.
Unfortunately the lab results do not reveal a definitive causative disorder or factor.
You have been extensively tested. A specific test for the very rare porphyria disroder could be a consideration but this test needs to be performed very carefully so as to assure that the result is accurate.
Often, if a patient has an unexplained disorder I will try to take them off of all medications for a "drug holiday". This has to be done under close supervision of your doctor, however. Then your doctor can determine if the medications are contributing.
There may be a deeper neuropsychiatric issue at play here - something that would fall under the expertise of a neurologist or neuropsychologist.
I do not otherwise see evidence of a purely hematologic disorder here.
The elevated D-Dimer is non-specific - it can reflect anything from inflammation to infection to blood clot or other disorder which is why it is usually only ordered if there is a high index of suspicion of an active blood clot.
Again, I can appreciate that you are dealing with a frustrating issue in terms of your health and encourage you to continue to followup - especially with your primary doctor who is th "quarterback" of your overall care.
Sincerely,
Dr. Galamaga
Above answer was peer-reviewed by :
Dr. Raju A.T
Brief Answer:
Followup
I was finally able to access your data.
I am impressed that your doctors have searched far and wide to determine a cause for your constellation of symptoms.
Unfortunately the lab results do not reveal a definitive causative disorder or factor.
You have been extensively tested. A specific test for the very rare porphyria disroder could be a consideration but this test needs to be performed very carefully so as to assure that the result is accurate.
Often, if a patient has an unexplained disorder I will try to take them off of all medications for a "drug holiday". This has to be done under close supervision of your doctor, however. Then your doctor can determine if the medications are contributing.
There may be a deeper neuropsychiatric issue at play here - something that would fall under the expertise of a neurologist or neuropsychologist.
I do not otherwise see evidence of a purely hematologic disorder here.
The elevated D-Dimer is non-specific - it can reflect anything from inflammation to infection to blood clot or other disorder which is why it is usually only ordered if there is a high index of suspicion of an active blood clot.
Again, I can appreciate that you are dealing with a frustrating issue in terms of your health and encourage you to continue to followup - especially with your primary doctor who is th "quarterback" of your overall care.
Sincerely,
Dr. Galamaga
Followup
I was finally able to access your data.
I am impressed that your doctors have searched far and wide to determine a cause for your constellation of symptoms.
Unfortunately the lab results do not reveal a definitive causative disorder or factor.
You have been extensively tested. A specific test for the very rare porphyria disroder could be a consideration but this test needs to be performed very carefully so as to assure that the result is accurate.
Often, if a patient has an unexplained disorder I will try to take them off of all medications for a "drug holiday". This has to be done under close supervision of your doctor, however. Then your doctor can determine if the medications are contributing.
There may be a deeper neuropsychiatric issue at play here - something that would fall under the expertise of a neurologist or neuropsychologist.
I do not otherwise see evidence of a purely hematologic disorder here.
The elevated D-Dimer is non-specific - it can reflect anything from inflammation to infection to blood clot or other disorder which is why it is usually only ordered if there is a high index of suspicion of an active blood clot.
Again, I can appreciate that you are dealing with a frustrating issue in terms of your health and encourage you to continue to followup - especially with your primary doctor who is th "quarterback" of your overall care.
Sincerely,
Dr. Galamaga
Above answer was peer-reviewed by :
Dr. Raju A.T
thank you so much for your input. we are working with the UTMB porphyria lab today to order testing.
thank you so much for your input. we are working with the UTMB porphyria lab today to order testing.
Brief Answer:
Follow-up
Detailed Answer:
That sounds excellent. I think with your level of need, visitation with a University based practitioner who sees unusual medical conditions on a regular basis is the most reasonable approach.
Sincerely,
Dr. Galamaga
Follow-up
Detailed Answer:
That sounds excellent. I think with your level of need, visitation with a University based practitioner who sees unusual medical conditions on a regular basis is the most reasonable approach.
Sincerely,
Dr. Galamaga
Above answer was peer-reviewed by :
Dr. Raju A.T
Brief Answer:
Follow-up
Detailed Answer:
That sounds excellent. I think with your level of need, visitation with a University based practitioner who sees unusual medical conditions on a regular basis is the most reasonable approach.
Sincerely,
Dr. Galamaga
Follow-up
Detailed Answer:
That sounds excellent. I think with your level of need, visitation with a University based practitioner who sees unusual medical conditions on a regular basis is the most reasonable approach.
Sincerely,
Dr. Galamaga
Note: Do you have more questions on diagnosis or treatment of blood disorders? Ask An Expert/ Specialist Now
Above answer was peer-reviewed by :
Dr. Raju A.T
Answered by
Get personalised answers from verified doctor in minutes across 80+ specialties
