Living with ALS: Questions

[MenschHaus]

Hello everybody, my grandfather died on ALS, since a year I'm having fasciculations all over my body but no evident atrophies or paresis so far, anyone in here with similar story?

 

[Gracer]

Several of our fellows have close relatives (parents, aunts/uncles) or grandparents with ALS, and it is quite natural that their first thought is about 'familial case'. If you do not have any major neurological deficite, you may really forget about having ALS right now, that is the only thing which could be positively drawn. ALS is NOT a twitching disorder, it is progressive paralysis.

 

[MenschHaus]

Yulia, from your experience here, would you say that there's more people here who had someone with ALS in close family and did develop ALS with time, or there's more of such people who didn't develop it from BFS?

 

[Gracer]

I am here for two years, and I had seen one guy falsely diagnosed with ALS (diagnosis was dismissed by Berlin ALS center) and one guy with unusual initial sympotomes (not typical for BFS) who quit this site after having diagnosis of "suspected MND" (not even ALS), none of them had relatives with ALS as far as I know.Our moderators try to keep in touch with most of fellows registered here and according to our moderators, no one of fellow twitchers with typical BFS picture had not developed ALS yet (amonth them there are people who twitch for well over decade or two)Vast majority of fellows have no relatives with ALS (I think in total maybe it would be about a dozen among few thousands of registered persons), which is a good estimation for both rare nature of ALS an practiczally significant lack of connection between BFS and ALS.

 

[MenschHaus]

Well it means that I would be a rare case of someone who has history of ALS in family but himself developed a BFS instead of ALS. IMO the risk of BFS evolving into some kind of MND is higher in my case. The signs I have could be an EARLY symptoms of some MND...

 

[Gracer]

Dear Rutra,familial ALS usually is well known in the family and hits their victims in younger age than average (which is about late 50s). I had read stories of familial ALS on our Russian web sites, and usually all victims were about 30 years or so when it had happened to them as well to their ancestors. Familial ALS rather resemples other inherited MND like Huntington's disease (and generally other inherited disorders related to methabolic changes accumulated in the tissues) in terms of onset. Suppose your grandafther was well over his 30s when he got that diagnosis, so for you chances for familial ALS are very very small.One year of fasciculations without any other signs means defintely something different than ALS. Overall people seldom twitch before paralysis in ALS, and even more rare are cases when twitching precedes other typical ALS symptomes (spoiled reflexes, paresis or paralysis) for more than 4-6 month.From your words I can figure that you are sure (or almost sure) your grandpa's ALS case is familial. May I ask you why you think so? Any other diagnosed or suspicious deaths in the family history? Any premature deaths due to MND?

 

[MenschHaus]

My grandfather was an orphan since 2yo so very little is known about his ancestors, though I'm quite sure his parents died on unrelated diseases. He died at the age of 55 after 2 years of disease. I'm 33.It's not that I'm sure that he had familial ALS, I just find it unlikely that I might have BFS while my grandad had ALS. I did a test of SOD1 gene mutation and it was negative, but SOD1 is responsible for 20% of FALS and I don't feel like spending more money on genetic tests ATM.The 4-6 month period you mention haven't passed quite yet. I got first fascics a year ago, but after a couple of months, maybe weeks they went away. Then on spring my left eyelid started to twitch a lot, and after the holidays it came back all over my body.Fascics are not the only symptoms I have, but they are the only "hard" symptoms, along with kinetic tremor (even of a tongue) and the pain resembling overtaxed muscles of arms and neck. All the rest is on the edge of perception. Like my hands feeling more clumsy (I drop things more often), shorter breath especially while sleeping (sometimes I even wake up and can't take a breath for a couple of seconds), a feeling of heavy arms, jaw muscles seem to get tired by chewing faster than before, my tongue feels awkward when talking or eating, my thumb and point finger feels awkward too (like the joints were swollen), and what worries me most I think the shape of my hands change - I see some holes which weren't there before, I think (maybe I'll post some photos).I know most of that sounds to you like "sheesh another one", but all of it?

 

[Gracer]

but all of it are typical stress reaction symptomes.look, you have very typical strss reaction development: acute period that was resolved in few weeks. then you had a period of seemingly well feeling, but either thoughts you experiences were not digested completely, or something else stressful had happened, and you started with typical of typical stress reactione - yey twitchi (me to by the way and hundreds of fellows here). probably idea of having familial ALS was slowly eating you not being conscioulsy survived.All the rest of your symptoms mean severe neck tension (that is why you have pain here) becasue of being contantly alerted, this casues jaw tiredness too (they are just constantly clenched), this also causes bad circulation in your hands and they feel clumsy. Muscular pain is very common here, as well as excersice intolerance. Shortness of breath (especially at night) is typical symptom of hyperventialtion caused by anxiety. You do not need gasp to get it, believe me. Just breath a bit faster and a bit deeper than usually - and voila, you have shortness at the day and painful gasps at night due to well known physiological sleep apnea phenomenon common for everybody but enhanced in anxious persons up till the situation whch is described as "I forgot how to breath'. Search the site for hyperventialtion and you wil find tons of such reports. Feeling of swollen joints, clumsiness (sepscially in the morning), loss of subcutaneous fat resulting in 'dents' and 'holes' are so common for BFS that you describe really textbook picture of it.Remember, ALS is a desiease of failing, not feeling. ALS people invented that formula to distinguish between their condition and other ones. Suppose your grandpa was rather unable to use his hands or legs, not only feeling they are different. usually ALS victims report otherwise: they say that they felt no difference until rapid and sudden loss if function, causing amasement and disbelif first: the hand feels healthy... but just does not work! You have completely other picture as far as I can understand - you have bad feeling but still functional.Hope that would help a bit. Read the site, and you would find tons of people sharing your symptomes. Maybe that would assure you that your case in not unique.my best regardsYuliaPS. Did I understood right that your fascics started after your grandpa died? he seems to be too young at 55 to have a grandchild of 33... 55 by the way is about the typical low limit of ALS age range. 33 is still too young.

 

[Kristina62]

Dear Rutra80,in the Support group we already discussed this. You can read my story with title: 7 months twitching - Mother has ALS. (Now 8 months twitching).Also, a membr with nickname P20 already has a topic with the same - his fater has ALS. He is thirty-something years old, I am 27 yrs. I am available for discussion. My mother's age of onset was 58.Pm me if you like.Best regards

 

[MenschHaus]

You just gave me more hope than anything else in the last half of the year. Thank you. Krisztina, all the 3 neuros I visited, including one of the best here too in a specialised clinic, excluded ALS. To be honest, I find it outrageously ignorant that they don't want us to be EMG tested, and I will be stubborn until I get tested, but maybe they're right and we are the ignorant ones here. I really hope so, very much.As for me, I wouldn't say I'm psychically wrecked. Quite a lot of bad things happened during the last 2 years, like surgery of my 1yo son, car accident (broken knee & vertebral notch), a change of work (which is rather exhausting now), diseases and deaths in family, a mortgage loan to pay, etc. but I know there are people living really horrific lives so I do my best to get over everything and have no depression. Maybe it all gathers underneath the skin and shows up like that indeed...Yulia, as for the symptoms I have, I try to believe and explain it to myself just the way you put it. Except that I always had very strong jaws ("thanks" to that constant clenching for most of my life), and by the shortness of breath I don't mean that I lack air, but that my breath gets more and more shallow and fast.As for my grandfather, he died in 1987 when I was 6yo. I was too young to be informed how his disease developed, and the relatives forgot the details, and also he wasn't so self-centered to constantly monitor himself and inform everyone that he twitches or something, but I believe that you don't wake up with sharp ALS symtoms from day to day. What I know about beginnings of his disease, is that he had slurry speech for almost a year, then he got pains in his arms, family got worried when he refused to drive a car, and then it took few months for him to be not able to raise his arm - that's when he alerted everyone. He did have fasciculations but I get contrary reports from family whether they were at the beginning or rather the end of the disease. There's also a question if he exactly had ALS - it were 80s, communism, poor diagnostics (even thought he had access to the best neuros here) - I don't remember him having cramps or spasms, maybe he had (not that it makes much difference) LMND?I'll try to be in contact here, to let you know how it is going with me, and I will be looking forward to see that Krisztina and P20 are doing fine.Love for you all.

 

[MenschHaus]

Yesterday I had EMG, it's clean. I think it's over a year since I started twitching, still no problems with strength. There are some new issues, but also some went away or got lighter, also I think that since a couple of months I have less fasciculations and they are lighter (especially on eyelid).I add a signature to my profile in case it brings anyone some hope.