Back Again

BFS Online Support Group

Moderators: JohnV, Arron, garym

Back Again

Postby GuitarGuyBMG on February 15th, 2016, 11:35 am

Hello all, some of you guys may remember me if you were here in the 2007-2009 time frame. I started having twitches when I was 18 which lead to anxiety, more twitches, etc. That anxiety was made even worse when my great aunt who was 78 was diagnosed with ALS; the only case to that point in the family. Of course, that made me worry some, but we come from a large family ( she was one of 9 kids ) and there were no other cases in her generation on my mom's generation ( she has 33 first cousins ). My mom's father lived to be 75 and he had no signs of ALS, but did have some degree of Parkinson's.

For the last 8 years, I've lived with my twitches, barely noticing them sometimes. My mom started getting headaches this past summer, followed by some weakness of the hand and foot. Our immediate fear was a brain tumor but an MRI quickly ruled that out. However, her neurologist was still concerned. I was talking to my father about the appointment and asked him why the doctor was still concerned, to which he replied "Well, she has some muscle twitching and he wants to do an EMG." I sat in my truck and broke down. I knew what this likely meant.

Come September 29th, she had the EMG, and to our relief the neurologist said he did not think this was ALS. This is the same doctor who diagnosed my mother aunt after no one else seemingly could or would. She was started on a loading dose of IVIG to deal with the weakness, all on right side, from the apparent diagnosis of multifocal motor neuropathy. The IVIG showed some promise. She seemed to be walking better, but then she had a blood clot and things went down hill from there. Of course, that made it hard to walk and she was put on a walker. She got less active which I'm sure resulted in losing some muscle mass. She stayed with my wife and I for a month and seemed to hold her own. She had another dose of IVIG, went home, and seemed to be doing better. However, a fall a few days later scared her and she didn't want to walk much after that. We got her into an assisted living place that does physical therapy, but they weren't aggressive and she was in bed way too much.

We had another appointment with the neurologist in January, and to our surprise he felt like the IVIG had helped her arm some. She could barely lift it above her head, but then suddenly she was able to lift it with ease a few days after her treatment, which was now the minimum dose. However, she was not getting any physical activity with her legs, and was now in a wheel chair. We tried to get her into an acute rehab facility, somewhere they could deal with her disability. Insurance would not go for it. Her neurologist ordered a second opinion and EMG from the state medical school hospital and we went there, hoping for the best.

I went downstairs to get something to eat for my mom, dad, sister, wife, and myself while waiting to be called back. I got text saying they were in a room already and headed upstairs to find the doctor already well into the exam. She examined her for about 10 minutes it seemed, and I knew what was coming. I looked at my sister who is in training to be a PTA. We've talked to each other more in the last few months then we probably have the past few years, always trying to convince each other that our Mom didn't have ALS. Not knowing how to react to the news that we knew was coming, I put on my sunglasses and just sat in the corner in the room with my head down. My sister was standing and the doctor pulled another chair for her to sit in, which made me even more sure of what was coming.

"Your symptoms don't really fit with MMN. It usually has a strong response to IVIG and isn't as quickly progressive. I really think we're dealing with ALS."

I didn't cry immediately as I thought I was going to. I had cried about it over the past few months, because I thought I knew. My father, who I've known 27 years, cried for the first time in front of me. It's been six days and it still hasn't really sunk in. They did an EMG that afternoon, which pointed towards ALS though "two things were inconsistent," according to the doctor.

We meet with her local neurologist tomorrow around lunch time. He has been our biggest advocate in all of this. I'm hoping he has better news - he has seen some of the affects the IVIG has had and did identify some conduction block on her original EMG, although the neurologist down at MUSC dismissed it as insignificant. I want to hold out hope and do everything I can for her, but I also want to be realistic. I realize tomorrows most likely outcome is confirmation of the ALS diagnosis, but I cant help but hold on to the fact that she had no UMN signs and that the IVIG apparently did some good.

I thought I had left this dreaded disease that all of us fear behind me nearly eight years ago, but it won't just leave me alone. My twitching has picked up a lot the past few days, or maybe I'm just more aware of it. I don't have the constant fasciculation's my mother does, but just a popping twitch a few times an hour here or there. However, every time I twitch I think "Is that a BFS twitch, or have all these twitches I've had these last 9 years a sign of things to come for me." It's just unreal to me; when I first started twitching it was an unfound fear; I was 18 with no family history of ALS. Now I am 27 with two apparent cases in my immediate or extended family.

Please pray for my family in this difficult times.
Brian Gilstrap. Established May 6th, 1988.
Twitching since January 27th, 2007.
GuitarGuyBMG
Selfless giver of time
Selfless giver of time
 
Posts: 108
Joined: February 7th, 2007, 3:36 pm

Re: Back Again

Postby Yuliasir on February 16th, 2016, 12:44 am

Dear friend,
it is always awful to see dearest people are declined. Whatever would be your mom's diagnosis, it would be a trial for the whole family. So I am praying for you to cope with.

As for your own risk to get hereditary ALS, I could point ot to several circumstances.
1. Both affected persons in your family were female. Probably this decreases your risk (if I understand correctly, you are male).
2. Your mom's aunt was 78. Considering your age, I may suppose your mom is at ther late 50s or early 60s (which is more or less statistically fits peaking age of ALS manifestation). Even if you have hereditary tendency to ALS, and even supposing it is not something to strike rather women in your family, it is still around 30 years minimum for you to live quite safely. If we all survive in the next 10-15 years, and if the science would not be forgot in this world, there are HUGE chances that ALS would not be a death sentence anymore, considering enormous increase in our knowledge and treatment techniques. It would be still a grave condition, like MS or cancer, but not 100% death sentence - same as happens in MS and cancer during last 10-15 years.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2952
Joined: March 3rd, 2012, 1:42 pm

Re: Back Again

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests