All 4 of my grandparents had Mullins lines. All 4 of my grandparents had a family member in their line that had MS. It runs in families but isn't hereditary. Anybody else know of other families or can/has/is tracking families w/MS connections? If the docs can't find anything we should. I have never been asked those questions? Have you?
Thanks!
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Re: Multiple Sclerosis/MS
You are so so right... there are at least 4 confirm case in my family, including me and 3 had advance MS and died from it, even though doctors say it is not suppose to kill that is false and I also know of someone else who died from it within 3 years of being diagnostic (that one is a really rare case of an agressive form of MS, so don't anyone panic).
I have been ruminating a project of putting together a large genealogical data base, but that would mean that for every family in it we would need to find all of their ancestors, not just direct lines or lines that we suspect could be carrier, because that could get us off track and make us miss important interconnection with other family groups with that desease.
Personaly I suspect the point of origine to be in Europe before the colonies, but if we could at least narrow down the carrier lines here in america... maybe the European will be interested in doing putting together a similar project... which eventualy could allowed everyone to compare notes and see where we might all connect.
Yep... it is ambitious and it will take time... lots of time an efforts and it will need more than just one person to make it work... but I believe it is worth it!
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Re: MS IN MULLINS/MULLIS FAMILIES
I WONDER IF MULLINS & MULLIS ARE SURNAME VARIATIONS OF THE SAME SWISS FAMILY? DO YOU HAVE ROOTS IN THE CAROLINAS OR VIRGINIA? IN GENEALOGICAL CHARTING THE MEMBERS OF MY LOCAL MS SUPPORT GROUP, WE LEARNED THAT THOSE OF US WITH LOCAL ROOTS ARE DISTANT COUSINS. THE DISTANT ANCESTOR WE ALL HAD IN COMMON WAS NAMED MULLIS. PROGENITORS OF THE MULLIS LINES IN THIS AREA OF NC WERE DESCENDANTS OF SWISS IMMIGRANTS WHO MIGRATED FROM VA TO NC IN THE 18TH CENTURY. THIS IS NOT A SCIENTIFIC STUDY - JUST A SMALL SURVEY OF A FEW FAMILIES WITH NEUROLOGICAL DISORDERS. THOSE OF US WITH MS HAVE RELATIVES DIAGNOSED WITH OTHER NEUROLOGICAL DISEASES - ALS, MD FM, MG, ETC. PHYSICIANS THEORIZE THAT WE HAVE A PREDISPOSITION FOR AUTOIMMUNE/NEUROLOGICAL DISORDERS, BASED ON OUR EX[POSURE TO OTHER FACTORS.
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Re: Multiple Sclerosis/MS
Our family knows for a fact that MS is a genetic disease.
My paternal grandfather's sister had what they called "The Paralysis". My father was diagnosed in 1959 with MS he passed away in 1994. His sister had two daughters with MS. One died within 10 years of diagnosis. At least one of his 10 brothers if not two had daughters who were diagnosed recently with MS.
If that doesn't prove that it's hereditary, I don't know what will. Brenda
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Re: Multiple Sclerosis/MS
We are of Irish/Welsh descent. Brenda
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Re: Multiple Sclerosis/MS
These recent postings which describe "inherited MS" appear to have a dominant gene pattern (due to the frequency in the family..each child of an affected member having a 50-50 chance of getting it). It is important that you all know that there a number of known dominantly-inherited neurodegenerative diseases which were, up until late 1990s, usually misdiagnosed as MS. The genes for these disorders began to be discovered in mid-1990s, one by one. There are still some for which the gene is being looked for but not discovered. Some of these are the inherited spino-cerebellar ataxias, a form in familial paraplegia, a form of muscular dystrophy, et al. ("ataxia" means "without coordination"). We're talking mostly about adult onset diseases.
Families with any familial disease involving muscular coordination and/ or degeneration should see a neurologist who tests an affected family member for the DNA panel on the ataxias (called an ataxia panel). Be sure the lab has the ability to test for ALL the known inherited neuromuscular diseases---as far as I know, only Athena Lab can do this (Athena does a lot of gene research in this area, and labs usually patent their diagnostic gene tests).
It is important that an affected family member be tested every few years as new tests for newly discovered genes are found...the whole panel does not have to be run. It is important to research efforts that families get a definite diagnosis of type....all types do not have the same progression, lifespan, etc. This enables those at risk to have diagnostic testing if they should (before having children), make long-term plans, and allows the researchers to actually get a handle on how many persons there are affected by these diseases. Neurologists do not report these numbers. Yet, it is through knowing how many that researchers get grant money, pharmaceutical companies get interested in research and drug developement. There are many, many families who are affected but not counted in the national numbers.
No matter the result of DNA testing, the neurologist really should refer the family to a movement disorder clinic for further evaluation, support, and better treatment for symptoms. Most neurologists see only a few of these cases, and are not abreast of the latests tests, treatments for symptoms, clinical trials, nor the emotional support needed to the family. Many members of the national organizations for these diseases complain that their local neurologist did not refer them to any group or specialty clinic but more or less said there's nothing to be done, go home. This is not true and those neurologists are not doing their patients a service. This is not just my opinion, but is the opinion of neurologists who specialize in working with these kinds of patients and who have said so outloud. There is a chronic problem with neurologists not recognizing their lack of expertise in the area and not recognizing the benefit to the patient, even psychologically, to see someone who knows a lot about it.
For more information on these various inherited disorders, please visit the website for the National Ataxia Foundation, which is "ataxia dot org" (I don't think the posting allows me to actually type the website in). The organization is a wonderful support to families and funds research for this area. The site is building a list of movement disorder clinics available around the country. There is one is Jackson, MS and one in Atlanta which are not yet on the list (due to a mistake) but will be added shortly.
Through NAF, you can come in contact with other people with the same specific type in your family, or with others who tests is negative, which only means the gene hasn't been discovered yet. Those families are of interst to the ataxia researchers. And some of these families DO have genealogy histories on their family. There are support groups throughout the country. There is an annual membership meeting (convention) held in a different city each year, which is attended by as many as 600 people. At this meeting, leading movement disorder specialists, ataxia researchers, and other disciplines give presentations on a variety of useful topics related to these disorders, included what's going on in worldwide research.
I personally know what it is like to have people in every generation have a particular unknown inherited neurodegenerative disease, and what it is like to know no other families with in. I cannot stress the value of finally have a correct, certain diagnosis and to be associated with specialists who actually see a lot of people with these disorders, and to be affiliated with a group that is positive, encouraging, cares about research, and provides value information. Knowledge is power. And there is power in doing something that helps future generations in your own family, even if it doesn't help you personally.
In the works is a North American ataxia registry where patients can register to be put on secure lists where they will receive updates on research available for their particular type of ataxia. This was just announced at the national meeting a few weeks ago. It won't be up and running until later this year (late 2009). If you live on the West coast, there is already one out of UCLA (Dr. Susan Perlman). There is also one out of Emory U. in Atlanta but I believe it is having some operational problems and I do not know the current status. Information is available through the NAF website or office.
If anyone has any further questions, including genealogy related to such inherited diseases, please feel free to contact me by private email or public postings. I am an experienced researcher---not paid professional but have attended probably 12 day-long training sessions as well as 20 or so training presentations, and have done research for probably 20 years, and spent hundreds of hours in archives. I am a sanctioned volunteer spokesperson (Ambassador) for the National Ataxia Foundation (for about 30 years), am a licensed clinical social worker and also a licensed Registered Nurse, attend almost every annual meeting, and have SCA3 in my family, as well as knowing many other families with other forms of inherited neuromususcular diseases. If I can't help you with your questions, I'll find someone who can.
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Re: Multiple Sclerosis/MS
I have started searching for my birth parents because I have clinically definite MS but am adopted. Is MS a legit reason to get adoption files opened in California? Sealed adoption... there was abuse involved and it was an involuntary adoption with respect to the parent. I am new to all this. I also believe I am of Welsh heritage based on the surname.
I don't know where to start, so I have been reading these message boards.
I have a sister who is my birth sister, who was adopted with me (we were not separated) and she suffers from another neurogenic disorder.
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Re: Multiple Sclerosis/MS
I wish I could answer your question but I don't know anything about California adoption law. I have helped an adopted aunt track her birth parents but she knew her birth father's name. Do you know where you were born? You obviously know your birthday and it sounded like you knew your birth surname. Find out everything you can from your family (I mean your adoptive family), no matter how small the detail or vague the memory, it may come in handy. If you can put your b-day, place of birth & birth surname together, you can start with your birth record. When did you get your SSN? If you got one when you were born, that is a valuable source. I am happy to help, just send me an e-mail.
About your DX...I am very sorry you have to go through this. I'm 16 years into my MS journey. It gets more comfortable with time, like a pair of shoes. I don't know what your sister has but I do know 80% of people with autoimmune diseases are women. Autoimmune diseases run in families but are not inherited. My father has MS and I have 2 brothers that are physically healthy. Again, if I can be of any help please do not hesitate to send me an e-mail.
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Re: Multiple Sclerosis/MS
Thanks for the empathy re: the ms. I just read excerpts of the CA law, and it really looks as if they won't unseal anything or reveal anything if you're not party to a lawsuit where the information you would gain would affect the outcome of the legal action. At least that is how it reads to me. Which means, I could view the certificate but they'd white-out the parents names.
How are we supposed to find anything out if the states have the right to block us?
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Re: Multiple Sclerosis/MS
Hi....Besides being an RN, and also an Ambassador for the National Ataxia Foundation (movement disorders), I was licensed social worker for many years with a licensed child-placing agency. Although I was in Alabama, I did work with two adult adoptees who were adopted in CA and wanted either contact with birthparent or updated med info. This was in early 1990s.
Here's my understanding: If you were adopted through a licensed child-placing agency (which would be the state OR any of the private adoption agencies licensed by the state at that time, such as Catholic Family Services, etc), then your next step would be to contact that agency and put a request in writing for what information or contact you would like. It is always possible that your birthmother has already placed a request on file. When there is a request by both the birthparent and the adult adoptee, they will honor the requests if both parties agree. Please note---these are child-welfare related agencies, NOT the same agencies as the state vital statistics office, which houses only amended and original birth certificates. The actual adoption agency will have the records of the interviews with the parent, their services to the parents, available medical information at the time, information on the father, et al.
If yours was a private, independent adoption, then I would suggest contacting the state child welfare agency in the county where your adoption occurred and ask their advice. It is possible that there is some system in place for assisting adoptees from private adoptions. Unfortunately, that's one of the big negatives in private adoptions. There is no agency which has your information to turn to years later, for post-adoption services or counseling.
It is important to be clear with yourself about your motivation for information. Is it possible that what you really are hoping for is a potential meeting of your birthparents? My experience in reunification cases is that the adoptee often starts out asking for medical information, but if that is obtained, they want contact with the birthparent. This is fine, but it is important to be self-aware about your fantasies or hopes (or fears) so that you can be emotionally prepared for what comes of your efforts. A licensed adoption agency will be able to provide you counseling with these issues, whether they handled the adoption or not.
If you have a definite diagnosis, you won't get anything more definite on that regard by contacting your biological family....diagnoses of many neurological diseases were not definitive at all at that time. Many progressive neuro-muscular or neuro-degenerative disorders were incorrectly diagnosed as MS. Sometimes this still happens. I trust you've had a complete movement disorder/ataxia genetic panel done to rule out other possibilities.
I would be interested to know what neurological disorder your sister has...particularly if it is a movement disorder.
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