Recurring Questions and Fears on Forum

[AllGoodHere]

It is amazing that through time on this forum you see the same round of questions and fears every so often. It is a cycle as people come and go. Not amazing in the sense that we are all alike in this way but in that 1)most people do not use the search function which would help them find others that have had their symptom(s) and 2)people constantly look for the differences in their symptoms rather than similarities. It is easy to understand that people need reassurance but let me just say to all of you newbies and all of you not-so-newbies who think they are different from anyone else here: pnh can cause symptoms just about anywhere in the body and there has been very little evidence that anyone first Dx'd with pnh ended up with anything worse. Tomorrow of course is a different thing, and any one of us can be stricken with an ailment, hit by a dump truck on the way to the market, win the lottery, or become famous. There are no guarantees in life one way or the other and if you obsess about this positively or negatively you are missing out on the one sure thing you do have: the present. If you pay attention to things outside of yourself for a while it may benefit you.Talk about cycles - time for me to disengage again for a while. I thought I may be of some use here if I came back but it doesn't seem so and it may just be better for me to take my own advice and see if I can help out in the physical rather than the virtual community. Paying attention to the sun on the leaves and the breath of wind off the water, I sign off yet again. Best of luck to all.

 

[dwdwmcd]

Thanks for your post. I'm probably one of the people you talk about - fairly new to the board, asking a lot of question about symptoms, and having a tough time determining if I belong here based on my symptoms. I have some twitching, but tons of the "other" stuff. Internal tremor/vibration/pins&needles, etc. I have used the search function - and you're right - I've found stories from others who have symptoms other than twitching but the majority seem to have twitching as their most problematic symptom - which makes sense with the definition of BFS. This board helped me get over the fear of ALS almost immediately - I truly believe the advice that without weakness ALS is a very remote possibility. However, for some of us whose symptoms go beyond twitching, the fear of other neurological conditions that often take time (especially in younger people) to diagnose remain. All that said, even if we come across as not listening or not researching the boards and appreciating the advice of those who have been here a while, please know that's not true. I guess I can only speak for myself, but even if I come across as scared and maybe asking the same questions and expressing the same fears that you've heard a million times, the postings here from you and others do bring a tremendous amount of comfort. There are many times when I will be so down and scared and I get on this board and read posts that are reassuring and I see people who are trying so hard to put the fear behind them and focus on living! I felt like your post was perfect timing for me b/c I was really struggling yesterday but today woke up and thought I have to stop constantly worrying b/c no amount of worrying is going to change the outcome. So thanks for your advice and posts - and your patience as each of us figures out this journey and dealing with the many emotions that accompany us along the way.

 

[BarbiePetals]

Well said AllGoodHere. I do really thing the best medicine for BFS is time. When this all first started for me I thought I would never get over it. I was terrified and unable to function. Now, 15 months later... I really could care less about the twitches. They don't even bother me anymore and they have decreasted a bit. I know how scary it was in the beginning but to the newbies.. there is life after BFS. You will get there.