There are so many protocols... how on earth does a person choose just one... I guess if doctors could come to a consensus we would know what to do... but maybe not as I can't seem to have the same drugs or treatment other people do I can't tolerate it... very puzzling. .
Significance of MTHFR Dysfunction
- Thread starter zoe.a.m.
- Start date
@Sea
I have had all the symptoms and seen all the doctors..
"Depending on your signs and symptoms, you may also need to see an eye doctor (ophthalmologist) for eye problems, a gynecologist or a urologist for genital sores, a dermatologist for skin problems, a gastroenterologist for digestive difficulties, or a neurologist for symptoms that involve the brain or central nervous system."
Not always for the symptoms of this disorder... but you would think they would notice. I have a new apt for gyno... old guy about to retire I am told but it is wks away and things will have changed by then.
treatment with steriods is out for me I can't tolerate them.
shutting down my immune system does not sound like a good idea
there is a list of studies being done.. maybe they will find a better treatment
http://www.vasculitisfoundation.org...ng-patients/?gclid=CMau0LCsydMCFQEHaQodV-sAgw
one of the studies mentions environmental risks.
Cedars-Sinai Medical Center in Los Angeles, CA is conducting several research studies that involve collecting data to better understand the genetics, environmental risks, and outcomes of patients with all forms of Vasculitis
An MRI mentioned vasculitis 10 years ago and suggested follow up... but the doctor did not think it needed to be followed up I asked him about it at the time. He said in his opinion that was not my issue.
another of the studies being done on Artieritis... is another thing I my family doctor checked me for .. eye doc said no... I did not have it. For me it showed with really sore head like I had been hit with a bat...
I have had all the symptoms and seen all the doctors..
"Depending on your signs and symptoms, you may also need to see an eye doctor (ophthalmologist) for eye problems, a gynecologist or a urologist for genital sores, a dermatologist for skin problems, a gastroenterologist for digestive difficulties, or a neurologist for symptoms that involve the brain or central nervous system."
Not always for the symptoms of this disorder... but you would think they would notice. I have a new apt for gyno... old guy about to retire I am told but it is wks away and things will have changed by then.
treatment with steriods is out for me I can't tolerate them.
shutting down my immune system does not sound like a good idea
there is a list of studies being done.. maybe they will find a better treatment
http://www.vasculitisfoundation.org...ng-patients/?gclid=CMau0LCsydMCFQEHaQodV-sAgw
one of the studies mentions environmental risks.
Cedars-Sinai Medical Center in Los Angeles, CA is conducting several research studies that involve collecting data to better understand the genetics, environmental risks, and outcomes of patients with all forms of Vasculitis
An MRI mentioned vasculitis 10 years ago and suggested follow up... but the doctor did not think it needed to be followed up I asked him about it at the time. He said in his opinion that was not my issue.
another of the studies being done on Artieritis... is another thing I my family doctor checked me for .. eye doc said no... I did not have it. For me it showed with really sore head like I had been hit with a bat...
The HLA-B gene provides instructions for making a protein that plays an important role in the immune system. The HLA-B gene is part of a family of genescalled the human leukocyte antigen (HLA) complex. ... It is unknown how HLA-B51 increases the risk of developing Behçet disease.
patients have B510101 suggesting that the susceptibility to BD was conferred by the B510101 subtype and not by any genes in linkage disequilibrium with HLA-B51 [15]. Accordingly, Amerindian populations, known to carry a high frequency of HLA-B51 but having no BD incidence, are known to carry the highest frequencies of nonsusceptible HLA-B510201 allele [9, 16].
https://www.hindawi.com/journals/pri/2012/912589/
over my head
patients have B510101 suggesting that the susceptibility to BD was conferred by the B510101 subtype and not by any genes in linkage disequilibrium with HLA-B51 [15]. Accordingly, Amerindian populations, known to carry a high frequency of HLA-B51 but having no BD incidence, are known to carry the highest frequencies of nonsusceptible HLA-B510201 allele [9, 16].
https://www.hindawi.com/journals/pri/2012/912589/
over my head
Sea
Senior Member
- Messages
- 1,286
- Location
- NSW Australia
I wonder if it would be worth finding a forum of Behcet's patients and getting a recommendation for a doctor who is knowledgable about it. It is rare so many doctors may not know enough to consider it as a diagnosis.
Alternatively, even finding a doctor who would be willing to look into it if you took the diagnostic criteria to them might be helpful. The doctor you have doesn't sound very helpful.
https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-7-20
They know some genetic types confer greater risk for Behcet's, but they don't know enough yet to be able to use a genetic test to rule Behcet's in or out as a possible diagnosis. The diagnosis is a clinical one, meaning based on signs and symptoms rather than a test.
They have a forum at 23 and me for this Behcet's and listed with it is psoriasis... which is in my family. I don't have it.
I talked to my doc about it and she said it is a disorder people in Turkey have not something I needed to worry about. I have an apt to see a gyno with the suggestion of herpes... I feel this is just one more apt that will be a waste of my time and energy when I don't have any energy. It has passed at this point.. I told my doc it was the same sort of mouth blisters I get from eating tomato so I treated it with antihistamines it may have helped some. I feel like I have been beating my head against a wall for a long time only to get a very sore head. I may cancel the gyno.. I am sure he has better things to do too.
From what I recall from research which gene shows up in this disorder depends on your nationality... different nationalities will show with different genes... sorry no link.. this is what I read before the tooth infection got so bad I could not see well enough to read. last wk...
I talked to my doc about it and she said it is a disorder people in Turkey have not something I needed to worry about. I have an apt to see a gyno with the suggestion of herpes... I feel this is just one more apt that will be a waste of my time and energy when I don't have any energy. It has passed at this point.. I told my doc it was the same sort of mouth blisters I get from eating tomato so I treated it with antihistamines it may have helped some. I feel like I have been beating my head against a wall for a long time only to get a very sore head. I may cancel the gyno.. I am sure he has better things to do too.
From what I recall from research which gene shows up in this disorder depends on your nationality... different nationalities will show with different genes... sorry no link.. this is what I read before the tooth infection got so bad I could not see well enough to read. last wk...
@btdt ...
I know this is an older post but I also get mouth and genital blisters. It took about 20 years for a Dr to diagnose me with lichen sclerosis. They are still not sure how the mouth blisters play into this but they definitely coincide when I get flare ups. I'm hoping at this point you have found out some answers....
I know this is an older post but I also get mouth and genital blisters. It took about 20 years for a Dr to diagnose me with lichen sclerosis. They are still not sure how the mouth blisters play into this but they definitely coincide when I get flare ups. I'm hoping at this point you have found out some answers....