So I knew my highschool chemistry teacher's wife came down with 'MS' when I was in school. My mom just told me today that both of their kids have it too!
She wants to tell them about Lyme, but doesn't know them that well (she's a teacher at the Jr. High).
How likely is it that she AND both kids would have MS??
I guess she's getting worse lately, switched neuro's to see if they could help. So she's been sick one year longer than I have been.
It's so hard because she would probably say she was tested for Lyme (Elisa) and was negative. I need to sneak UOS to her somehow!
Take care, Ocean
Posted by Tincup (Member # 5829) on :
Now that's a crying shame.
Totally crazy!
My suggestion would be to mail her a copy of Doug Fearns book, "Lyme Basics." It is free and it is a perfect thing to break the ice and provide excellent information.
You can make a copy by going to the SE PA Support Groups site.
You can also order nice looking books (pay printing costs- 50 cents or so each?) and they are WELL worth the money.
Good luck OC... this is a tough one for sure.
Let us know what happens please. I do worry.
Posted by TadichGrill (Member # 19679) on :
I know two people with MS and tried to get the message across to both that Igenex testing would be worthwhile. One not only has MS her sister does too and they were exposed to ticks growing up. She did buy and view a copy of UOS but still has not gotten tested and now is having mood swings on top of shingles on top of all kinds of health issues.
Posted by Geneal (Member # 10375) on :
I say hand her some literature.
If she is not interested, ask her to hand it to her daughters.
You can only lead the horse to water.
I don't know why, but often people are more comfortable
With diagnosis' of Parkinson's, Alzheimer's, MS, than Lyme.
Hugs,
Geneal
Posted by Dekrator48 (Member # 18239) on :
I think people have trouble considering other diagnoses because their symptoms fit their present diagnosis to a tee.
They feel they have no reason to question their Dr.
Therefore, they think there is no way that they have Lyme....they don't understand that it is a bacteria that causes symptoms of MS and many other illnesses.....all with "no known cause".
This is the point that I have been trying to explain to people on a FMS/CFS board.
So far, several of them have gotten an Igenex western blot that had significant results and have come to lymenet, and a few have at least started to ask questions.
Posted by soonermom (Member # 14494) on :
After I was finally tested through IgeneX and diagnosed (AND told there was no lyme disease in my state), I found out that a neighbor and her whole family had tested positive years before.
She had been told she had MS, he had been told he had ALS, and their next door neighbor also ended up with an MS diagnosis...all with in a few years before I moved out here (we all live on acreage)....
The lady with the MS diagnosis is on disability and doesn't even want to get tested for lyme. She is a lawyer and I guess happy with her disability payments.
I have been told that I have/probably have MS by some neurologists. They even found new brain lesions this week.....If I didn't know about the people around me, maybe I would be a little less sure about the whole lyme diagnosis at this point.
What are the odds that 3 women have "MS" and one man has "ALS" that live with in walking distance of each other in a town of 100,000? I need to look up some statistics on that.
I guess my point is that you should somehow say something to her, but it is up to her to accept it or not. People with siblings/parents with MS do have a higher rate of developing it themselves. I don't think I have ever heard of a mother with both kids having it, though.
Who knows, maybe it is more an environmental (tick exposure) issue than a genetic issue?? I don't know how old her children are, but I believe that MS is rare in kids.
It is worth a shot to give her some information. MS is such a hopeless, uncertain diagnosis with no REAL treatment to stop progression. She might be open to it since she is doing worse under the care of a neuro.
I know one of our members on here was in that same situation herself and that is when she decided to get tested for lyme and was positive!
Posted by Ocean (Member # 3496) on :
Thanks for all of your suggestions and stories, I truly appreciate it. There are other people in my old hometown with 'MS' as well. My mom's uncle had it for 30 years, became wheelchair bound and eventually died from it, he lived in the woods. Oh, the town is 6,500 people population. And now my brother has Lyme too.
I believe her children are teens now, it was 14 years ago that she was diagnosed and the kids were toddlers then.
I will talk to my mom today as she is coming over. I can see if my alternative MD has watched my UOS movie that I let him borrow and maybe she would be willing to watch it, who knows! No harm in viewing info, right?
It is strange that people get so comfortable with their disease though. I think a lot of them think that Lyme isn't serious so to suggest it's Lyme is to lessen the severity of their symptoms/suffering. I was all too happy to let go of my bogus CFS diagnosis. I always felt it was a crap diagnosis.
Well, thanks for the food for thought!
Take care, Ocean
Posted by Pinelady (Member # 18524) on :
I would never accept MS as a diagnosis.
For one thing we have global knowledge and accepting a MS diagnosis is accepting the unknown.
I refuse.
Just like I refused my doctor saying I was just depressed.
Posted by wtl (Member # 19883) on :
Hi Ocean,
There are some neuro diseases that resemble MS symptoms that are hereditary. I can't name all of them but most of them are in the family of Ataxia.
However, I would test for Lyme and other infections first if I have to go through what we have gone through all over again. We have struggled for four years before we arrived to this spot.
What part of Ohio is this, if you don't mind me asking?
![[Big Grin]](biggrin.gif)