My Doc says it definitely NOT genetic. Is he nuts or am I?
Your doctor, and an awful lot of his peers, is WRONG! My grandfather and one of his brothers both had Parkinson's, as did my father and my older brother. I have MS and my sister has Fibromyalgia, as does my oldest daughter and one of my nieces. Also, one of my nieces has MS and one of my grandsons has Asberger's/autism.
If they'd like to do a genetic study of my family, I believe they'd change their minds about the genetics. Neurological issues don't run in my family; they gallop!
My first neurologist said that there is a small genetic component to MS. He said that if a direct relative has it that you have only a 5% higher chance of having it than the rest of the population, however he said that if you grow up in my region up to age 15, you have a 30% higher chance of getting it. I have read studies since then that show an increased genetic component. I don't have time right now but will try to find and post it later. Another neurologist told me to make sure my kids take their vitamin D because they have increased risk. I know of a couple family clusters of it personally. Recently one family I know where the Mother, daughter (my age), and son had it for over 30 years (since my childhood), had a change in diagnosis. I grew up knowing them and doctors were treating them for MS. The daughter who is my age gave birth to a baby recently who was also sick, and was found to have Lyme disease. Lyme can be passed along in utero and now the whole family has been found to have had Lyme all along starting with the mother, who must have had a tick bite, passing it to the children all the way down to the grandchild. I am personally awaiting Lyme testing myself once my lymphocytes return after being killed off while on Gilenya. MRI scans for MS can look very similar to damage from Lyme Disease. Basic Lyme left untreated can turn into Neuro Lyme which has symptoms almost identical to MS. Lyme is also believed to cause some autoimmune responses though more studies need to be done. I wonder how many family clusters of MS need further testing to rule out other illnesses???
I believe there is a genetic link since I am one of five in my family with MS.
Yeah family members can be unhelpful.... my experience, & training as a [paid, professional] Peer Mentor at a state voc rehab dept, has helped me understand that my critical/rivalrous brother was acting out of guilt, fear, anger, sibling rivalry etc etc. Family members' reactions to a MS, or other serious, diagnosis can actually be damaging-- IF they react negatively/non-supportively then the affected relative/patient should immediately say so, as well as mention the known psychology around families dealing with the emotions around such a diagnosis, this could then be an opportunity to deal with family issues as it was and is for me [and several of the MS patients I know]. Or it could be necessary to avoid communicating with the non-supportive relative. You are not alone, this here is the Family of Folks with MS.. Working with a disabilities therapist helps.
I had symptoms for over 10 years and hadn't been diagnosed. After paralysis of my C-6 nerve in my eye, my brother-in-law suggested that I have a spinal tap. It was 100% definite. He said it was just as they taught him in medical school. Be very insistent on testing. MRI, spinal tap, whatever you need to ask for. Don't spend longer than necessary wo a diagnosis. There are a great deal of meds out there now. I started taking copaxone shots. At first daily and now 3X a week. I have been self injecting for over 10 years. Just be proactive no matter what you decide. Best of luck. :) Ricki