Hi DL -
You current issues may or may not be related to the family history you described. It is very unlikely that the family history had anything to do with MS. MS doesn't act that quickly , even primary progressive MS doesn't lead to sudden death.
Your issues may be related to your family history or they may be related to MS. I think you are on the right track by going to the MS clinic.
It is important for yourself to keep a symptoms diary. This is not so much for the Doctor but to keep things straight for yourself. I forget about things which happened a week ago. Things which see unrelated may have a cause which explains everything. Trouble shooting in Medicine is a flow chart. You start with what works until something does not. Unfortunately things are so specialized. They always knew I had something Neurological wrong with me. In the 1960's they had no MRI machines and they did not think children could get MS. Since I always had symptoms I did not know I had a problem. Finally my GP put it together when I was in my forties. It still took several years and a half a dozen Specialists.
The same GP and a good Gynecologist missed my Ovarian Cancer. It took several years of complaining to have the right test done. I saw lots of specialists and had lots of tests and procedures. I kept just saying "Something is not right. I do not know what but something is not right".
I wish we had a better medical system. I worked Veterinary for years. Veterinarians are less Specialized and have to rely on their patients not being able to communicate with them. They rely more on their knowledge and less on tests. I wish I could be treated by a Vet.
My GP used to not listen to me she thought I was a hypochondriac now she knows I only come in when something is really up. Now she sees me the same day. Her nurse used to roll her eyes at me now she does not. It is a shame it took near death to get doctors to listen.
Trust yourself and speak up. If they say its not MS for example respectfully ask what do you think it is? We need to communicate with our doctors. I come in with what I want to say written down. It is easy to get sidetracked and leave realizing you did not get to ask what you wanted. I keep my list short which my doctor appreciates.
Waiting is the hardest part. I now see a MS Specialist, a Pin Specialist, a GYN Oncologist, and a Hereditary Breast Specialist. I wait to get tests ordered, to have tests, and to get the results. All the doctors have many patients so they are not thinking about it like I am. Like me they are getting through their day. It is important when you get your test results that you get them explained and you get your questions answered. Something that is simple to the Specialist may not be to you.
Thanks for your reply. Like u I have the same questions u mentioned but not sure where to start. I'm trying to get an appointment at the ucsf ms clinic. So I don't know what else for now other than feeling like yuk everyday ;(
Hi and welcome to our little MS community,
I think you need to keep firmly in your mind, that even though there are 3 family members who've passed away, without knowing what the genetic or other 'inter-connected' medical explanation is, your personal health situation could have no relevance at all or it could possibly be an important factor. So I do think it's important family history that you really need a better understanding of, and if i were you, I would be asking questions of other family members, to get the truth of what actually happened, because if they are all connected in some way, then it is important information to have anyway, even if there isn't a commonality, you'll be more able to stop wondering.........
I've read what your MRI report states and unfortunately it does have some findings that should of put MS on your list of potential causes, that doesn't mean that it is MS though (!!) but it should of at least warranted further investigation and neurological monitoring over those years. Hmmmmmm if you've only just discovered this a decade later, you might be left with more questions relating to the potential of a neurological explanation, you probably need more answers to this unknown as well in the grand scheme of things.......
a) What prompted the MRI a decade ago? (b) What explanation was given for these findings in a young woman? (c) Have you actually been seeing a neurologist, if not why not? (d) Have you had any neurological assessments done, if not why not? (e) Have you had any other diagnostic testings for MS or it's mimics eg MS protocol MRI's, LP, visual tests etc etc, if not why not?
Try to stay grounded, there are far too many unknowns but i really think once you get the answers, you can put things more in perspective and be able to follow the direction left unexplained or at least get things happening so that you can cross it off your list of potential explanations, or explore things further. We will do our collective best to help where we can but please keep in your mind, that it is highly possible that MS is not your answer, you need to be your best advocate and get your answers to the unknown(s)........
The report is above and symptoms are so many like heart palpitations intolerance to hot n cold, headaches, muscle aches, mood swings, difficulty walking, nausea, gastro pains and discomfort, just a lot of crap
What are the doctor's saying and what are your symptoms. Good News is MS rarely is life threatening.