ALS Related ?

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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ALS Related ?

Postby TMcMahon on January 6th, 2005, 5:58 pm

Dad died of ALS in late 80's w/in 16 months of diagnosis. Fear remained in back of my mind. 3 years ago started to get thumb twitch that lasted 3 monthe and then switched to other hand. June 03 severe eye twitch that started my constant dwell on ALS.

Saw family doctor (Sep 03) who sent me to a neurologist. Calves started twitching on way home from family doc. Neurologist diagnosed BFS because no loss of strength even though I had very brisk reflexes. Said I should go on Zolft. Left feeling I was just blown off so 3 weeks later I decided to take it up a notch and see a Neurologist at Stanford medical center. In the mean time leg twiching increased as did random twitching all over body. No loss of strength just loss of sanity. Stanford doc. also found very brisk reflexes but said they were bilateral and because no loss of strength, normal muscle tone, and normal EMG, was obviously BFS. He sent me out for counseling, gave me low dose valium and 3 mos of Zoloft.
Twitching went away until May 04 and returned with a vengence, also began to feel cramping in arches of feet as I fell asleep, a weird quiver in the Jaw when I woke up, patchy tingling in small spots on my legs, and a shaking quiver of my arms and upper body. No loss of strength. Ran 4 miles 5X week and had increased to 2 sets of 50 pushups, and tested myself every day by walking heel/toe for 20 yards.

Went back to Stanford Neurologist who just shook his head (Wife was with me which I regret) he said I was stressed needed to see a shrink and uped the Vallium dose and gave me a 3 month prescription. He suggested that I quit my job as he thought it was a source of stress. Twitching disappeared completely.

Vallium ran out (July 04) and within 2 months twitching returned worse then ever. Random over body but relatively constant in legs. Jaw quiver and buzzing sensation now right as I fall asleep and when I wake up. Cramps in calves and arches when I fall asleep 3-4 time a week. Sometimes visible twich in tricep or thigh will last 2 days and then magically disappear.

To this day I have no loss of strength as I continue to run, but think I am just on the verge of getting weaker thinking it will strike me next week or next month. Wife thinks I am psycho but I cant shake the ALS thing because of my dad.

Its now been 1 year 4 months since noticable leg twitching,- is it possible ALS is just around the corner?
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Postby garym on January 6th, 2005, 6:22 pm

TMcMahon,

First let me say welcome to the group, sorry you have to be here. Then let me say that your story sounds exactly like hundreds that I've read over the past 18 months. The mental anguish associated with BFS is far worse than the physical sxs, especially the fear of als. I would have to imagine that since your father suffered from als that that fear would be expected in your case. The very good news is three different neuro's have told me personally that BFS doesn't lead to als, and hundreds of other members have stated that there docs have told them the same thing. Since you have had a normal emg you don't have als. Is als around the corner? Could be for any of us, but it has nothing to do with the twitching we are currently suffering from. Finally, the fact that you have started twitching and stopped a couple of times is absolute proof that you don't have als. ALS doesn't come and go, it comes and stays until the nerves/muscles die. Generally, once the twitching kicks in, the disease has already taken it's toll on the nerves/muscles and it would be apparent on emg and physically. That said, most here still struggle with the anxiety you talk about. I know i do.

Take care,

Gary
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Postby Stephanie on January 6th, 2005, 9:43 pm

Everything Gary said is correct. Most of us also experience the feeling that the bad disease is right around the corner. The important thing is that you 100% do not have it now, therefore the twitching is unrelated. Whatever is causing your twitches cannot "turn into" als twitches because they are not due to dying or even "sick" nerves as proved by the emg. I also have very brisk reflexes, which can be caused by anxiety. In als, first you get weakness then twitching (not all als patients twitch) in the weakened muscle. This is Not the case with you. I'm sure that your father started with weakness. His having als barely increases your risk of getting it compared to anybody elses. In fact, I've never heard of 2 people in the same family having it. Keep reading posts on this board, you will feel better the more you read. There is at least one other person who also had a close relative with the bad disease and they never went on to develop it. It will be very hard to overcome your fears but we will all be there for you. BTW, my brother has MS which also made this difficult for me since that is also a neuromuscular disease.
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Re: ALS Related ?

Postby LeeNC on January 6th, 2005, 10:21 pm

TMcM:

You have found the right place, this board. We know how you feel. Now, most of us did not lose a father to ALS, but otherwise, your symptoms and fears sure are familiar!

If I got it right, you mentioned: (1) thumb twitch that moved to the other hand; (2) eye twitch; (3) brisk reflexes; (4) cramping in arches of feet; (5) leg twitching; (6) random twitching all over your body; (7) quivering jaw; (8) patchy tingling; (9) shaking quiver of arms and upper body; (10) being told your problem was stress/anxiety/psychological; (11) buzzing sensation; (12) visible twitch in thigh or upper arm; (13) sensation that you're getting weaker; (14) especially noticeable symptoms as you fall asleep or as you awaken.

Personally, in my 7 months of what appears to be BFS, I've experienced everything you mentioned except #3, and that's only because I only had my reflexes checked once (by my GP) since this began. Wow, 13 out of 14! Plus some symptoms you haven't mentioned.

Sounds like you've been dwelling on this too much and are ready to move on. My advice to you would be to look at it this way: Anyone who tells you BFS is just in your head is misinformed. Anyone who tells you to just snap out of it has never had these weird, persistent & scary symptoms.

After a few twitchy months passed, I got to the point where I realized my symptoms were not getting worse, and I was then able to experience my symptoms as annoying rather than devastating. (And annoying they are.) But nowadays, I can often just ignore them. I feel good enough (for a 40-something Mom), just shaky & twitchy! I hope you can get some support and reassurance, so you'll feel better too.

Our spouses/mates/families/friends can only understand our complaints up to a point, and we'll exhaust them if we expect more. To me, most helpful is the sympathetic support from the great people (that is, fellow twitchers) on this board.

--LeeNC
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Postby Johnny on January 7th, 2005, 1:08 am

McMahon,

My heart goes out to you that you lost your dad to ALS. It is a horrible disease by all accounts.

As for your story, it seems to me that time, waxing/waning symptoms and most importantly no weakness are on your side and point to BFS.

Take care,

Johnny
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ALS Related

Postby TMcMahon on January 7th, 2005, 2:32 pm

Thankyou to those that replied.

My fathers ALS did indeed start with weakness. First noticed during a softball game (he was 70!) and while pithching a no hitter he was unable to continue throwing claiming his arm felt "dead". Weeks later he began to fall. After the 3rd time he couldnt get up and called a neihbor for help. Then he became unable to turn the key to start the car. He never noticed the twitching until the day he was diagnosed and the neuroligist pointed it out to him and my mom. It was all over his back. He had already lost all the muscle between his thumb and finger. (a very classic early ALS sign) Unrelenting twitching occurred late in the disease. It would strike an arm/leg and w/ in days he lost all strength. The disease progressed very very rapidly. He went from diagnosis to wheelchair w/ in 5 months.

Even with this first hand knowledge I dwell daily.

Last year when I was seeing the neurologists and had already resigned myself to a short life, and the fear that I had passed the disease on to my children (actually the wost part of my constant dread) my sister caught wind and called telling me she thought she had ALS also because she had severe twitching for over a year in her legs and sometimes eye lid. I flipped out because to me this was just more proof that we had the inherited version. I thought we would both die w/ in a year and was heartbroken that my mom would have to relive the whole thing once again with her children. I became angry that she told me and I didnt want to talk to her for weeks. She thought she was being helpful. When I told her it was benign she piggybacked her symptoms with mine and was very relieved.

I have been given some good information from my 2 neurologists that sometimes helps me cope and often times I just ignore it- even now.

1) Fasiculations in ALS are always associated w preceeding weakness that is clinically present upon examination.

2) Initial fasiculations in eye lid and between thumb and index finger are never precurssors to ALS.

3) Random/migrating twitching over body is not consistent w/ ALS.

4) When I told my neurologist that my sister had severe twitching for a year before mine even started he replied that she would by now be in a wheelchair, on a respirator, or dead. He told me she need the same shrink as I did.

In the end I dwell because I think the odds are astronomical that my father died of ALS and my sister and I suffer from regular/continuous fasiculations and recently cramps- 2 symptoms of ALS.

Tim
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Postby dave y on January 7th, 2005, 5:56 pm

From what I understand, the familial ALS always has a history of striking multiple members of the family, never just one. Just one person having had it practically proves that it is not the familial kind.
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Postby TMcMahon on January 7th, 2005, 6:38 pm

You are right on multiple family members, but here is the problem. My father was 1 of 12 offspring of Irish parents who immigrated to NY in the early 1900's. His dad died at 50. All but 4/12 kids died before they were 40 from various ailments from flu to appendicitus etc.(life was tough in NY during the depression). My dad was one of the 4 survivors. He never knew his uncles or aunts as they were all back in County Claire. So family history is indeed scketchy. One thing positive is that familial ALS typically strikes 1- 2 decades earlier than random variety and since my father was over 70 when symptoms started the chance of inherited version is much less. This fact as told to me by my neurologist made me feel a tad better minutes after he reported that my CPK was elevated. (It was retaken because he said I spiked it by excessive exercise- he was right as it came back in normal range). I often think of these positive facts during the "dwell mode" but soon discard them as irrelevant because who could have BFS w/ cramping and be the offspring of an ALS parent. Dont you see the logic?
Tim
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Postby Stephanie on January 7th, 2005, 8:58 pm

I can imagine how especialy hard this is for you having seen first hand what happened to your dad. Even though I know a lot of the facts I still live in constant fear also. There are almost 1,000 members on this site so you can just imagine how many thousands if not millions more people twitch like us in this world. It seems like twitching is almost quite common and therefore just coincidence that you twitch and your father had the bad disease. The twitching in als has a specific cause and origin. Your twitching is proven to not have the same cause or origin and therefore could not be related in any way to als. Right now you are healthy and alive. Go to therapy to try to get over your fears so you can enjoy life again. You never know what's going to kill you but you don't want to spend your living years in fear and depression. I bet when you're 90 you'll look back at all of this and say " *beep* I wasted so much time!" I myself lost 2 years waiting to die. Life is precious, whatever it takes you need to find a way to live it to the fullest. Hang in there!
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Postby LeeNC on January 7th, 2005, 10:37 pm

Yay, Stephanie, I agree. Good post.

Tim, I hope you can start to enjoy life a little more now. That your Dad was still playing softball at 70 is something to smile about. I am confused, though. You said his symptoms started when he was 70, but he died in his late 80's just 16 months after diagnosis. You mean he went almost 20 years before diagnosis?
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Postby TMcMahon on January 8th, 2005, 1:35 am

My dad was diagnosed in the late 1980's when he was almost 71. He died at age 72 in 1987. The process was swift and unrelenting. Weakness was first, only and very major presenting symptom. He never noticed fasiculations until his neurologist pointed them out to him on the day he was diagnosed. He had no idea and had never felt them up to that point. In fact he never perceived them until the last 9-10 months of his life. When he finally "felt" them it was late in the disease and as the major fasiculations attacked he would loose all strength (the rest of the little he had left) in a muscle group w/ in days. Weakness preceeded the fasiculations by months.
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Postby amy_twitch on January 8th, 2005, 1:40 pm

I couldn't agree more with Stephaine's advice! Almost all of us here have wasted a portion of our lives living in fear instead of living our lives.

Do whatever it you can to refocus your life. It's understandable to fear ALS when we have these symtpoms (in your case more that others because of your father). Your doctor has reassured you, and you MUST move forward with that reassurance.

Also remember, that this is life, and heck, there are thousands of ways to go. Unfortunately, most of us on this board tend to focus on and fear just a few of them. To heck with any fear at all....we need to live and enjoy the time we have!

I'm glad you joined the board--you'll get so much support here. I certainly did, and it changed my life for the better!

Amy
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Postby LeeNC on January 8th, 2005, 8:38 pm

Tim:

I misunderstood, thinking THE late 80's were HIS late 80's - sorry. And of course sorry that you lost your Dad at a relatively young age. The older we get, the younger 72 seems.

One good thing about our BFS, if I may say so, is that it is a wake-up call for many of us, if a small one. Once we've gotten past the gut-wrenching fear that we really do have a swiftly illness, most of us have at least occasional periods where we really are grateful to be able to whine about the little stuff, where we have a renewed appreciation of all we DO have. I get little moments here & there - had one recently while walking to my office building on a chilly morning. Just glad I can put one foot in front of the other.

Check in with us. Always someone here who can reassure you.

--LeeNC
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Postby CheckRaise on January 8th, 2005, 11:23 pm

LeeNC wrote:
One good thing about our BFS, if I may say so, is that it is a wake-up call for many of us, if a small one. Once we've gotten past the gut-wrenching fear that we really do have a swiftly illness, most of us have at least occasional periods where we really are grateful to be able to whine about the little stuff, where we have a renewed appreciation of all we DO have. I get little moments here & there - had one recently while walking to my office building on a chilly morning. Just glad I can put one foot in front of the other.

Check in with us. Always someone here who can reassure you.

--LeeNC


Fantastic post!
I think of this all the time as well..
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Postby TMcMahon on January 10th, 2005, 4:41 pm

Again, thanks for the words of encouragement. The mind works in mysterious ways even in the face of hard cold facts.

I guess my angst was/is increased when I read the back and forth comments comparing the Mayo study to the Canadian/English study (6.7% w/ initial fasiculations only, developed ALS) and one of the concluding remarks concerned "caution" in diagnosing BFS for those presenting with only fasiculations and a family history of ALS- which is me...
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