My Unknown End: 50 and ALS

[abexoKittenxo]

I am a male just turned 50 and feel like my whole world has collapsed. My uncle on my fathers side died in Jan this year of als he was 74. I knew nothing of this disease prior to that. I have suffered with atrial fibrilation (mild ) for a long time but just over a week ago I had a short attack following a very stressfull week, the days following I started to notice a trembling feeling in my stomache, by last Friday I was getting the odd muscle twitch I looked it up on the net and by Sun they were all over my body ,legs, right eye,torso, chest etc. Feeling like hundreds every minute like the pop corn effect some talk of when i am sitting or laying down.I have had a very painful right shoulder for 3 months with aching pain down into my forearm. My right wrist and and hand have also been really painful in recent weeks across the back of my knuckles somedays are better than others but I do not seem to have lost the strength in arm or wrist it is more the pain that is effecting it. It is also better some days. 3 years ago I had an MRI on it and it was a Tendonitus and a joint issue, my doc still as of this week believes it is a flare up again and is offering injection. I also was diagnosed with a carpal type issue 2 yrs ago on the wrist. I am now recalling that in recent months I have experienced increasing cramps that last for a few seconds in my calves and feet usually when i wake up in bed, I also now recall a soreness of the skin on my upper left arm that felt like sunburn that lasted several months( now gone) I have a very stressfull job and life and I am an anxious person, my docs have me listed as cancer phobic and I have had more investigations over the years than I can remember. I also have OCD that has got worse lately.I have checked for muscle atrophy against picture examples and got my wife to look all over me but I cant detect anything obvious. The doc has put me on 2mg diazepam since monday because I am literally freaking out cant sleep cant eat. The twitches have slightly lessened but they are still there especially the pop corn in my legs when i lay flat.I am convinced i have inherited the als from my uncle. Can someone please confirm if the twitches in als can come on as rapid and widespread as they have and if they are all over or isolated as the info seems to contadict itself on the net and I am now starting to think the issues are more on my right side, shoulder arm wrist eye etc.I am seeing a top nuero who saw my uncle on Fri but I feel as though I am going to have a nervous breakdown before I get there

 

[Gracer]

Hi Chris,I would like first of all say that as far as scientists can judge, inherent ALS usually strikes people who are much younger than you, and it is rare even among ALS itself. So do not afraid that you might have it inherent. Twitches in ALS usually come later in the course of disease, and before that absolute majority of victims experience clear clinical weakness which is not your case. And vice versa, rapid onset of widespread twitches is very common for bfs.with all what you told about your background, it is much much more possible that you have your old carpal tunnel issue (pain in hand etc.). Cramps during morning stretches are so common... I have them for years and still ok. I also noted that they are worse when I am nervous. itchy skin or even urticaria also could be a symptom of some nervous breakdown (remember some people can have even permanent leisons just because of hyperexcited nervous system).People like me and you (I have strong GAD, suffering since I was 6 yo, and now I an 42) are extremenly prone to health phobies especially when somone in the family dies. But OCD is manageable, however it is a real hell to overcome it...BFS is often has side preferences, so do not worry about it. mine favorite side is left.welcome on board,hugsYulia

 

[PuppyFurryFunTimes]

First of all, sorry to hear about your uncle. I dont wish that disease on anyone. Now try to Calm down, that's how mine started.. Eye twitched then went viral!! It was bad! I'm headed to the neuro right now for an EMG. I feel you're pain. I feel like passing out & I'm almost to the year mark.. I truly believe that stress can do a whole lot on our systems & I'm hoping its stress or myasthenia Gravis.... But anyways, try to calm down. From some of the stories I've read the twitching is more localized. Did your uncle have twitching at first?

 

[abexoKittenxo]

Thanks to you and Yulisar for your best wishes good luck with your test. I am not sure what my uncle had first but I know he had twitches i think it started with muscle and weight loss. I am so confused as to what comes first, I dont seem to have any real weakness as some sites suggest by the time you recognise it it is chronic and I dont have that. I know I have been off the scale for stress and anx lately and the twitches really just came out of the blue. I keep reading all the other symptoms and convincing myself they fit. I am frantic about my shoulder arm and hand pain, does als give pain in the muscel / joint before it waistes? today I was looking at my back in the mirror and noticed a slight difference in the muscle across the back of my shoulder blade side to side. I went straight to my doc who confirmed there is a difference when at rest but when flexed the muscle is working and looks similar side to side. I am now conviced this is the start of astrophy and I am going out of my mind with this. .....I am so scared about seeing the Neuro on Fri as I think he will confirm my fears.

 

[abexoKittenxo]

Thanks to you and Yulisar for your best wishes good luck with your test. I am not sure what my uncle had first but I know he had twitches i think it started with muscle and weight loss. I am so confused as to what comes first, I dont seem to have any real weakness as some sites suggest by the time you recognise it it is chronic and I dont have that. I know I have been off the scale for stress and anx lately and the twitches really just came out of the blue. I keep reading all the other symptoms and convincing myself they fit. I am frantic about my shoulder arm and hand pain, does als give pain in the muscel / joint before it waistes? today I was looking at my back in the mirror and noticed a slight difference in the muscle across the back of my shoulder blade side to side. I went straight to my doc who confirmed there is a difference when at rest but when flexed the muscle is working and looks similar side to side. I am now conviced this is the start of astrophy and I am going out of my mind with this. .....I am so scared about seeing the Neuro on Fri as I think he will confirm my fears.

 

[Gracer]

Chris, as far as I know, ALS is a disease of motor neurons, not involving joints. Actually if your uncle started to lost weight and muscle bulk, it means his muscles already WERE atrophied and useless, and twitches of atrophied muscles are classic for ALS. In BFS muscles that twitch are still active. People in ALS can have pains but also only after they are paralysed - because of tension and load on other muscles to keep posture etc.You have carpal syndrome diagnozed (and pain in arm fits it 100%) - looks like not only in the wrist but maybe also in elbow and maybe even in the shoulder joint you might have similar troubles. By the way people in BFS often complain for joints problems - clicking, extra movement, tunnel or tunnel-like syndrome etc.do you know that any tunnel syndrome might cause some muscle bulk loss? it is still a neural damage (however mechanical, not biological, but the consequences are the same - muscle becomes less mobile and can lost some bulk however to have well developed atrophy and paralysis, one should really neglect his or her tunnel syndrome. So your visible decrease of muscle could be realted to the tunnel syndrome, especially if it is on affected side - and if not - just to natural body asymmetry.I am almost 100% sure that neuro will tell you the same as I say: high anxiety, tunnel syndrome. maybe regarding your age is not 19 (like for some of our fellows) , he or she would prescribe EMG just to see how far you arm is damaged. I believe you must concentrate on the fact you have real mechanical trauma in your arm and take care about it (because unattended tunnel syndrome may end up in a way requiring surgery and not always restoring hand mobility) and do not push yourself even more and more down with ALS fears.In our 50th we are not perfect already (I mean in terms of body condition) - we already have fragile bones, sore joints, bad ligaments... but we still can live a good worthy life.I know it is hard, Chris. My own GAD is trying to eat me right now, when I am writing those wordds of reassurance to you. But I can tell you that there is a life beyond and we must struggle to get this solid land of peace.Do not google for ALS please. Since ALS is relatively new disease, the net is filled up with old textbooks and strange controversal stories. Read BFS in a nutshell sticky post here, it is based on the knowledge of most professional doctors, specialistss in ALS of todays, not on the basis of 80 years old observations. BFS is even more fresh diagnosis, so search this site sources because they are based on Mayo clinic report, and Mayo was a pioneer in making BFS a diagnosis. We are having another scientific study right now and you could enlist if you wish.I can also tell you that ALS forums on West and on East (in my own Ukraine or Russia) are really filled up with people like we are, and the moderating neurologist have sometimes to be quite impolite to push them to the right treatment out of the place where people with no treatment options are rtying to share their thoughts etc.In your condition you might need not only benzos to calm down but maybe a speaking therapist too. I was using both option and find this working very good.Have my sympatiesyulia

 

[sorincast]

Hello Chris. I have atrial fibrillation and this heart issue appeared in my life a few months after a very stressful event. Now I have to take propafenone twice a day and carry and extra pill for emergencies. BFS started after a strong anxiety/depression period I had last year (since I was a child I have somatization problems). The symptoms you describe are characteristic of BFS and I have most of them (including carpal). I believe that long term anxiety can lead to BFS and also make it worse. It is a good idea to talk to a neuro for reassurance, but do not worry, bodywide fasciculation is not characteristic of ALS.

 

[abexoKittenxo]

Thankyou all for your support. I have just become so aware of everything that is happening in my body. I keep getting localised pains in my calves now that last for a minute or so and i dont understand why. Ive started staring at every muscle i can see in the mirror and i am sure my right shoulder which i have had the pain in for 3 months is slightly slimmer than my left. Other than my shoulder / arm pain and my stress I felt absolutley fine 12 days ago how can this change so quickly was it just that I wasnt noticing any of the symptoms ? I have a list of so many concerns/symptoms I am worried the nuero ( tomorrow ) will just disregard me as being crazy.

 

[Gracer]

Hi Chris,in fact it is very common for BFS and GAD - it strikes and then you start downward spiral and boom! Find yourself at the middle of the hell. What you really need is a good live support of somebody to whom you may deliver all your fears and obtain quiet understanding. If you share religious beliefs, you may apply for Church for the help or use speaking therapist, or even add a psychiatrist to your list of dictors if no other options are available or useful...

 

[journeyer80]

Sooo did you ever see the neuro on Friday?