Hello. I'm A 42-year-old male.

[miketool123]

I'm a 42 year old male and I've had sort of an odd progression of symptoms of the last three and a half years.

It began as some generalized fatigue just feeling tired all the time. At the same time I was getting some tingling in my left pinky that ended up progressing to tingling and both hands and forearms as well as feet and calf area. I have constant tingling of my scalp and muzzle area of my face. Last summer I began to notice some muscle twitching but it had calmed down for a few months and when it came back it came back strong.

Well what about now I have muscle twitching all throughout the bottom of my feet and probably 60 different locations across my body. I don't have any of them that I can say is a constant issue but they all sort of just pop off at different times. Along with all of the tingling. I'm getting cramps in different muscle groups. My left side seems to be more effective than my right at the moment.

My problem is now I feel like I have some issues with speech and my left side seems weaker than my right but I can't say 100% for sure that this is not just my perception of these things because of what I've read about als at this point. With all of the tingling there's obviously something going on because it has progressed over time.

I have had a brain MRI that came back negative as well as an MRI of my spine that came back negative that was about 2 years ago. I've been seen by three different neurologists and none of them felt the need to do emgs but I also wasn't experiencing the amount of muscle twitching that I am now when I was seeing those neurologists. I had one neurologist do a simple nerve conduction study on my hands and they came back as mild carpal tunnel.

I know nobody can tell me whether or not I have ALS I guess I was just trying to vent a little bit. I do have a new appointment with a new neurologist so I can go and discuss the changes in my symptoms.

 

[lgelb]

This doesn't sound at all like ALS to me. If any of the neurologists had seen clinical weakness or other neurological impairment, they would have ordered an EMG, you can be sure. As you say, it can be subjective to "feel" weakness when you are cued up to worry, and long-term widespread twitching, even if/as you judge it progressive, is not in itself worrisome for ALS. Tingling is something else altogether.

I would be in touch with a good internist as this sounds more systemic than anything.

 

[miketool123]

Thank you for your response. I was able to get an appointment with a different neurologist and I went and saw them the day before yesterday. She has scheduled an Emg. I was also given referrals for a new MRI of the brain/spine, blood work and a nerve biopsy. There were some issues with my reflexes. One of the things that was giving me a little hope that this was a difficult but less fatal condition was all of the sensory symptoms but the neurologist sort of dashed those hopes because she said that a lot of the new studies are showing many patients with sensory symptoms. I think I'm in pretty serious trouble. I know everyone says to wait till the Emg and honestly what choice do you have. It's not until March 6th. The symptoms and fear are overwhelming at times. I know there isn't anything anyone here can do for me but I just had to get it of my chest somewhere. Thank you again.

 

[lgelb]

ALS does often have sensory manifestations, but not generally at onset as you describe. So the odds are still in your favor. A nerve biopsy order is certainly a different direction.

 

[miketool123]

Sorry, I wrote nerve biopsy but I meant to write muscle biopsy.

 

[lgelb]

The same comment applies. That suggests they are suspicious for myopathy, where the problem is with the muscles directly, not the nerves that control them.

 

[miketool123]

I made a mistake earlier when I said that it was just a nerve conduction study. I went back and I looked it what had been done at the neurologist office previously. About a year and 3 months ago I had an ncv and EMg done. The notes on the EMG say that there wasn't any evidence of ALS or any other mnd. It notates a slight difference between one parameter of the two ankles. It notates some slight carpal tunnel in both wrists.

I tried to find some hope in that but I've done an insane amount of research and I truly do believe I'm in pretty bad trouble. Well I was at the neurologist office during the last visit she checked my reflexes and it showed nonexistent reflexes at my arms and hyper reflexes at my knees. That's obviously not a very good sign when coupled with the absolutely insane amount of twitching that is happening in my body. I can have twitching in two to three places at one time. The twitching will usually manifest itself over 50 or 60 different tiny spots throughout the day. Some of the twitches are single little twitch while others are a single large twitch. Some are a series of small twitches and others are a series of large twitches. No real rhyme or reason to it.

One of the things that had given me plenty of Hope at one time was the onset of sensory symptoms before anything else but everything I've read says that all of the newer data suggest up to 20% of ALS sufferers will experience peripheral neuropathy in their hands and feet sometimes up to 2 years before any other symptoms. I can't say that I'm particularly weak in any limb. What I can say is that none of the joints on the left side of my body are acting appropriately.

When I move the wrong way I get a relatively loud pop in my shoulder and it's consistent. My elbow has had some sort of tendonitis for over a year. My knee is the only thing I can describe as weak but I can't really say it's the muscles that feel weak it's the joint itself. It doesn't pop all the way to where I fall but it is undeniably giving out to a certain extent. During that original neurologist visit I had mentioned some twitching apparently because it's on the notes. But it was limited to my arms and legs. I doubt it was as pronounced as what is happening now because I'm sure they would have picked up at least one twitch without machine and the report doesn't show any.

I was able to get my EMG pushed up a bit and I'll be going at 8:00 a.m. on Monday. Again, I know there's nothing anyone here can say that's going to make anything any better and I know no one can be my doctor but my doctor but I just felt like telling the story for some reason. I'm a single father of three girls. Two of which are grown and on their own and I have a 14 year old left in the house. I've come to a point because of how odd my body has felt for the last three and a half years that I'm sort of accepted but something was going to happen to me. What is very difficult for me to accept is having to come home and tell my little girl that her life is going to be destroyed. There's no one here but me to pay the bills so when I stop working we become displaced and this child is going to have to come to grips with what is happening to her father and I don't think I can put into words how much that is breaking my heart.

It's just crazy how stable things were and all of a sudden it's just exploded. Only thing that doesn't fit is the tingling in my scalp. I've had MRIs and I'm not positive for MS. So every bit of research I can find I just can't find anything that has the same pattern of twitching and reflexes that I do except for ALS. I know that's not a diagnosis but in a time at which you have access to unbridled information you don't really have to be a physician to put the parts and pieces together if you're meticulous enough.

Even the timing of my last EMG would give some sort of comfort but I can find you a hundred examples where people had clean emgs and 6 months later they didn't. To anybody who bothers reading this I appreciate your time. I don't really have much of a reason to write any of it except for I can't talk about it with my children yet and I don't have a lot of other people that I can openly speak to about medical problems so I figured I would get it out here.

 

[lgelb]

I would advise you to stop reading about ALS, which I really don't think you have. Your "100 examples" [sic] testifies to working way too hard to fit your case into an ALS onset pattern, which you simply have not described.

Reflexes wax and wane and their interpretation is art as well as science. A world-famous physician I worked with once playfully tried to elicit my knee reflex as I lounged on a table. He couldn't.

Widespread twitching argues strongly against ALS, way more strongly than one exam with quirky reflexes (ALS does not create absent reflexes in isolation, btw) or anything else you have mentioned supports it.

 

[miketool123]

Thank you very much for taking the time to read all of that as well as replying. I hope with every single fiber of my being that you are right.

I got the reflex thing from an ALS journal that states it's common for your upper extremities to show hyporeflexia or areflexia after a period of time but commonly before showing signs of clinical weakness while you're lower extremities present hyperreflexia.

Whatever happens I will post the outcome of my EMG.

Thank you again for listening

 

[miketool123]

I wanna say thank you again for responding and for anyone else who has read my words. I feel pretty alone with all of this.

I know a lot of the people who come here for advice without a diagnosis never end up getting one which awesome but there is so much happening to me that I can see a future that doesn't include those three dreaded letters.

I've had all these seemingly unrelated things happening for a bit and I had a feeling things would come to a head eventually. I didn't know what ALS was till a month or so ago.
I had some mild twitching in my hands and feet a year and a half ago but I didn't think too much about after I talked to the neuro because he didn't seem worried at all. Then the twitching spread and I get so busy I couldn't read tell you when it happened but I can tell you I noticed about a month and a half ago. That's when I started looking.

The last two days Everytime I raise my arm forward from my side it pops pretty hard and it's hurting pretty good. It's hard to describe but it feels like it's hanging in the socket. I'm getting more and more cramps and I can't hold this office phone to my head without trembling.

I don't have a very active or strenuous job so things like signs of weakness would go right past me till they get bad enough to cause something like my shoulder being misaligned.

Whether is all happening quickly or just being noticed now I couldn't tell you but none of points to anything good and I'm trying to find a way to mentally accept it.

 

[ShiftKicker]

Hi Mike,

It might be time to take a break from engaging here til after your EMG. Focusing on and posting about a disease like ALS despite being reassured what you report doesn't sound like it means this place is unhealthy for you and may only be increasing your already high anxiety. While we sympathise with the uncertainty you are experiencing, there is not much we can do for you here. We've provided you information, reassurance and advice. If that is insufficient, it might be time to approach someone qualified to provide you with some stress reducing tools.

Please let us know how your emg goes. While it seems a long way off to you, it is a few weeks away. In the meantime, please take care of yourself and look into ways of managing stress while you wait.

 

[miketool123]

I completely understand. I know there is nothing anyone can do. Sometimes it just helps to get things out when you've been holding them in.

When I started looking into all this I was really looking for things that would point me away and I just never found it. That's how I found myself here in desperation.

I apologize for the continued posts but things just sort of keep changing and I think it goes without saying that its just been a lot.

Thank you for taking the time to give me the advice.