Schedule Appointment with ALS Experts

[GinniferLynne]

Columbia!!!! Lou Gehrig ALS research center

That is where Dr. Rowland is, and Hiroshi Mitsumoto (he literally wrote the book on ALS).

I would try and get appt with one of these two guys. They are both famous neuro's, and would be best in answering your concerns on Lyme/ALS/pregancy risks. At least I would think so.

Can you get to NYC fairly easily?

BTW, are you in Westchester County by any chance? My husband is from there.

Ginny

 

[GinniferLynne]

I guess I should add these MD's are not just ALS, but MS I believe also. Either way, they are top neuro's.

Ginny

 

[AveryzAveriezA]

StephG22,

I am feeling so sad to think that you are considering all of this as you plan your next pregnancy. It is stressful enough to do things like take the prenatal vitamin every day, stay away from alchohol, chart your cycle, etc. much less worry about pregnancy bringing on ALS.

Having said this, I understand your thought process based on all the information you provided. However, is there a correlation between lyme and ms or als? I have not heard of this. I have heard that lyme symptoms can be mistaken for ALS, but not that these are related by cause/effect.

For the record, my twitching came on after having 3 babies. I think the youngest was around 2 when I first noticed eye twitch and 4 when I decided that I should worry about ALS (of course I have BFS and I am perfectly healthy). Could it be a simple coincidence that you developed twitching while pregnant. Did you have lyme then? There are all kinds of possiblities that I think are far more likely than pregnancy bringing on twitching and certainly not ALS.

If I were in your position, I would try to get all of the concerns you have addressed pronto so you can begin to enjoy the process of becoming pregnant. Ginny's suggestion to see a specialist is good - I know you must be tired of specialists - but find someone whose opinion you trust and that will help.

I'll be waiting to hear of any pending "good news".

Ava

 

[DJohnDavies]

StephG22,

You're in a tough spot. But the story you told about the person who developed ALS after pregnancy is the first time I have ever read or heard of a link between the two. I think if there was anything more to that then it would be mentioned somewhere in the all the literature about ALS. There are so many variables, though, that could have triggered ALS in that woman you mentioned. I'd need alot more proof that the pregnancy actually caused or triggered ALS or even Lyme before I'd base anything on that.

Johnny

 

[sammy123]

The pregnancy factor in ALS is new to me too. I have heard of so many supposed "risk factors", all with little or no data to support them. Everything from "lifetime sweating" (alot of people who get ALS are athletes, supposedly) to recent head injuries starting ALS. I think there are just too many variables involved in that disease. It probably requires a slew of things to go wrong at the same time, including some kind of genetic propensity. In the face of heresay with no data, I wouldn't worry about it. If there were a real correlation, it would be known better.

 

[Lotsofgirlshere]

I don't want to prolong this somewhat controversial thread but I would like to add that if pregnancy brought on ALS somehow then we probably would have had a significant reduction in ALS cases over the past few generations since most of our ancesters had WAY more kids than we're having - and doctors would have found some type of correlation. Pregnancy can bring on a host of problems but I don't think ALS is one to worry about. The rewards of having a child significantly outweigh any of the risks associated to a pregnancy (barring an existing serious medical problem - and I don't think BFS falls into this category). Who knows - maybe the pregnancy will take your mind off your ALS worries and fears.

 

[StephG22]

My concerns weren't really if pregnancy brings on als, but if it were to trigger worsening of my Lyme which could trigger a mnd as it may have done with my friend according to her Dr's. I guess this is the wrong forum for this question and you would have to have known first hand the circumstances of my friend and brother to understand this fear of mine. Anyway, we might as well drop this debate now as it doesn't pertain to bfs.