Aa
Metabolic Disorder
Hi,
I am 43 years old I was previoulsy diagnosed with MS, only I had a negative MRI and spinal tap. A new Neuro, ran alot of tests. A carbohydrate test came up 12.8 (range 0.0-5.9). My Neuro thought I was drinking alcohol. I have never drank in my life. He ran a new test called #4003 carbohydrate deficient glycoprotein , (ULTRA Q) it came back 5.4%. I was told I have a genetic metabolic disorder. I can't break down alcohol or organic solvents. I have looked up this syndrome but I definitely don't match what is wrong with the people who have it.
I have had an EEG which showed brain injury, I have been diagnosed with an autoimmune dysfunction which causes problems with my thyroid. One time it will test in the normal range, and the next time it will be low. Its been in this type of pattern for 2 years. I still experience all the symptoms of Ms like numbness, tingling sensations, etc. Weakness more on my right side than left. I have memory problems and many times feel off balanced. I also have migraines at least 3-4 times a week. My EEG showed conitnuous headaches.
Because my body stores and can't break down alcohol or organic solvents will this affect my liver over time? I guess I am worried about this even though I don't drink, will storing this cause the same affect as if I did. I have eliminated all the things in my home that have alcohol or organic solvents. But I still come into contact with them at my job or when I leave my home.
Is there anything I can do to help myself. I have searched and searched for info on this test result wondering if it could be anything else? IS it possible? The only thing I can find is CDGS, yet as I said its a syndrome that affects mainly children. Is there any vitamin, etc that would help my metabolism break down this alcohol/organic solvent?
I appreciate your time,
Jane
I am 43 years old I was previoulsy diagnosed with MS, only I had a negative MRI and spinal tap. A new Neuro, ran alot of tests. A carbohydrate test came up 12.8 (range 0.0-5.9). My Neuro thought I was drinking alcohol. I have never drank in my life. He ran a new test called #4003 carbohydrate deficient glycoprotein , (ULTRA Q) it came back 5.4%. I was told I have a genetic metabolic disorder. I can't break down alcohol or organic solvents. I have looked up this syndrome but I definitely don't match what is wrong with the people who have it.
I have had an EEG which showed brain injury, I have been diagnosed with an autoimmune dysfunction which causes problems with my thyroid. One time it will test in the normal range, and the next time it will be low. Its been in this type of pattern for 2 years. I still experience all the symptoms of Ms like numbness, tingling sensations, etc. Weakness more on my right side than left. I have memory problems and many times feel off balanced. I also have migraines at least 3-4 times a week. My EEG showed conitnuous headaches.
Because my body stores and can't break down alcohol or organic solvents will this affect my liver over time? I guess I am worried about this even though I don't drink, will storing this cause the same affect as if I did. I have eliminated all the things in my home that have alcohol or organic solvents. But I still come into contact with them at my job or when I leave my home.
Is there anything I can do to help myself. I have searched and searched for info on this test result wondering if it could be anything else? IS it possible? The only thing I can find is CDGS, yet as I said its a syndrome that affects mainly children. Is there any vitamin, etc that would help my metabolism break down this alcohol/organic solvent?
I appreciate your time,
Jane
A related discussion, Some good info here was started.
Dear Jane,
I was diagnosed with a metabolic disorder, and I have not been able to get results from traditional medicine.
Two months ago, I found a book called "Cure For All Disease", by Dr. Hulda Clark, and I have been following her recommendations especially a treatement called "Liver Cleanse".
Now I feel like a new person.
You can find a tool that she recommends called a zapper online at www.health-hut.com
Good luck in finding your own cure. If you want to contact me my email is ***@****
Best wishes,
Claudia
I was diagnosed with a metabolic disorder, and I have not been able to get results from traditional medicine.
Two months ago, I found a book called "Cure For All Disease", by Dr. Hulda Clark, and I have been following her recommendations especially a treatement called "Liver Cleanse".
Now I feel like a new person.
You can find a tool that she recommends called a zapper online at www.health-hut.com
Good luck in finding your own cure. If you want to contact me my email is ***@****
Best wishes,
Claudia
Dear Jane:
The finding of sharp waves on an EEG usually means epileptigenic activity. However, the statement of beta waves usually means that you were taking a benzodiazepine or it might indicate a normal finding. I do not know what they meant by slowly kindled? At the Cleveland Clinic we do not describe such activity, so I do not know what is meant. The second reading of delta and theta waves means that there is slowing of the EEG in this region. This may indicate that you have had somesort of brain trauma or injury in the past. Slowing is not normal but it is not seizure activity. For instance, in an area of where a stroke occured or a head injury occured, one would see slowing. It would not tell the neurologist that a stroke or trauma occured but just that a remote injury occured. There is no EEG activity that indicates a constant headache, or a headache of any sort.
CCF Neuro MD
The finding of sharp waves on an EEG usually means epileptigenic activity. However, the statement of beta waves usually means that you were taking a benzodiazepine or it might indicate a normal finding. I do not know what they meant by slowly kindled? At the Cleveland Clinic we do not describe such activity, so I do not know what is meant. The second reading of delta and theta waves means that there is slowing of the EEG in this region. This may indicate that you have had somesort of brain trauma or injury in the past. Slowing is not normal but it is not seizure activity. For instance, in an area of where a stroke occured or a head injury occured, one would see slowing. It would not tell the neurologist that a stroke or trauma occured but just that a remote injury occured. There is no EEG activity that indicates a constant headache, or a headache of any sort.
CCF Neuro MD
My husband Jim posted the first question I din't realize someone answered it, thanks! I went through my paperwork that I have copies of and there are so many things that I don't understand. I have a hard time remembering from appt. to appt.
I went back to my EEG and it says this is an abnormal electroencephalogram demonstrating focal phase reversing sharp waves (beta transients)dysrhtymic slowly kindled by activating procedures in the left frontal temporal area within a low amplitude record with a normal with a normal frequesncy background alpha activity. It said studies of this nature are consistent with irriative or destructive dysfunction in the left front temporal region. What does this mean?
The next one said this is a normal electroencephalogram demonstrating a mild decrease in disorganization in an overall record demonstrating attentuated amplitudes with focal and and parxosymal phase reversing polymorphic theta and delta bursts in the left temporal region and activation of the right temporal slowing with over breathing. It then says studies of this nature suggest: an epiletpiform focus in the left temporal region of a long standing nature, producing right temporal dysfuction as well, in a patient with myogenic features suggesting continuous headaches. What does this mean?
As far as the carbohydrate tests I don't have any other info on the serum tests. Just what tests were run and the results. So I will have to ask at my next appt. I do appreciate your help it gives me questions to ask.
thanks
Jane
I went back to my EEG and it says this is an abnormal electroencephalogram demonstrating focal phase reversing sharp waves (beta transients)dysrhtymic slowly kindled by activating procedures in the left frontal temporal area within a low amplitude record with a normal with a normal frequesncy background alpha activity. It said studies of this nature are consistent with irriative or destructive dysfunction in the left front temporal region. What does this mean?
The next one said this is a normal electroencephalogram demonstrating a mild decrease in disorganization in an overall record demonstrating attentuated amplitudes with focal and and parxosymal phase reversing polymorphic theta and delta bursts in the left temporal region and activation of the right temporal slowing with over breathing. It then says studies of this nature suggest: an epiletpiform focus in the left temporal region of a long standing nature, producing right temporal dysfuction as well, in a patient with myogenic features suggesting continuous headaches. What does this mean?
As far as the carbohydrate tests I don't have any other info on the serum tests. Just what tests were run and the results. So I will have to ask at my next appt. I do appreciate your help it gives me questions to ask.
thanks
Jane
Dear Jane:
If the transferrin isoelectric focussing test (carbohydrate depletion test) was not done at the Mayo Clinic I would not believe the results. Which carbohydrate was elevated??
CCF Neuro MD
If the transferrin isoelectric focussing test (carbohydrate depletion test) was not done at the Mayo Clinic I would not believe the results. Which carbohydrate was elevated??
CCF Neuro MD
Dear Jane:
Your posting is extremely similar to a previous posting that I have commented on. First, I do not know what you mean by "carbohydrate"? Is this glucose? is this fructose? is this mannose? which carbohydrate? Alcohol per se does not give one a carbohydrate problem. It is metabolized by a specific enzyme ADH, to yield an aldehyde which is further metabolized. In addition, I do not know what carbohydrate deficient deficient glycoprotein test this is. The only one that we run is looking at the carbohydrates on transferrin to see if there is a carbohydrate addition problem on proteins. This test is only run at the Mayo Clinic and I would not trust any other lab in the world with their results. Again, headaches are not detected by EEG. The EEG can detect cranioectomies, seizure activity, drug use, encephalopathy but not headache. In addition to the things that I am not quite understanding, is the "breaking down" organic solvents. We do not have solvents in our bodies but we do have organic acids as breakdown products due to fat metabolism.
I am sorry that I am unable to answer you questions.
CCF Neuro MD
Your posting is extremely similar to a previous posting that I have commented on. First, I do not know what you mean by "carbohydrate"? Is this glucose? is this fructose? is this mannose? which carbohydrate? Alcohol per se does not give one a carbohydrate problem. It is metabolized by a specific enzyme ADH, to yield an aldehyde which is further metabolized. In addition, I do not know what carbohydrate deficient deficient glycoprotein test this is. The only one that we run is looking at the carbohydrates on transferrin to see if there is a carbohydrate addition problem on proteins. This test is only run at the Mayo Clinic and I would not trust any other lab in the world with their results. Again, headaches are not detected by EEG. The EEG can detect cranioectomies, seizure activity, drug use, encephalopathy but not headache. In addition to the things that I am not quite understanding, is the "breaking down" organic solvents. We do not have solvents in our bodies but we do have organic acids as breakdown products due to fat metabolism.
I am sorry that I am unable to answer you questions.
CCF Neuro MD
My symptoms seem to mimic MS to a "T" with relapsing remitting type of symptoms. Another strange thing was my DHea level was amost non existent. Yet if I try to take a DHEA supplement my hands burn like crazy. So I can't keep taking it.
All my regular blood tests were normal, normal spinal tap, normal MRI. The only things that were high were blood tests for:
lymph, cd19 lymph, cd8,3sup
as I said my thyroid test for the FT3 was low.
Any insight into what is wrong with me would be welcome.
All my regular blood tests were normal, normal spinal tap, normal MRI. The only things that were high were blood tests for:
lymph, cd19 lymph, cd8,3sup
as I said my thyroid test for the FT3 was low.
Any insight into what is wrong with me would be welcome.
This was a serum test. (Both the carb and the #4003 test were serum) I was told I had a rare genetic metabolic disorder called carbohydrate deficient glycoprotein syndrome.
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