Als fear Got me worried sick

[affected]

The problem sheeks, is that ALS doesn't behave anything like you are describing.

It is a disease of the brain and nerves, not the muscles. Fasciculations mean NOTHING. I know they are worrying you, but they mean nothing.

Remember, your neurologist should insist or not on an EMG, not you. Go in there ready to ask - so what do you think? Rather than, do I have ALS? Be open to the possibility that with no medical training you are looking at it very differently to how the neurologist will look at it.

Hope it goes well mate.

 

[Sheeks]

Hi everyone,

So my neuro appointment in five days. Contraction fasciculations pretty wild in calves and thighs. Please check out my videos on YouTube. Do these still look like benign fasciculations? I am feeling doubtful.

https://m.youtube.com/watch?v=qDkzeeB31RM

https://m.youtube.com/watch?v=DKRGi3bxcCI

Thanks Sheeks

 

[Nikki J]

As Tillie said fasciculations/ twitches are meaninglesss. There isn’t a special appearance that says benign or not. It is the other symptoms and especially the signs like upper motor neuron signs and clinical weakness seen by the doctor that are important

Please reporrt back after you see the neurologist

 

[Sheeks]

Thanks for your reply Tillie, but wouldn’t the fact that twitches have recently began in my arms, my twitching fingers, the burning feeling I get in my shoulders when trying to write on the board at work and swallowing issues as described in my first ever post be signs of UMD Problems?

 

[Sheeks]

Hi Nikki the question below was meant to be for you.

 

[Bestfriends14]

Nothing you have described in any of your posts sounds like the onset of ALS symptoms. That's a good thing.

 

[KimT]

I'll answer the question. Twitches are not upper motor neuron signs. They mean nothing if there is no clinical weakness. Burning is a sensory symptom. ALS involves the motor neurons, not the sensory neurons.

Please do as you're asked and report back after you've seen a neurologist.

 

[Sheeks]

Hi Kim T

I have seen a neurologist and my appointment on Tuesday will be my third, but 5 months since my last. I have confirmed significant atrophy in right calf muscle from physio I have been seeing post ankle surgery. Her opinion is that there is too much deterioration to be normal, even with the ankle injury and consequent surgery. I promise This will be the last post I make until I see neuro on Tuesday.

Thanks everyone for your constructive and positive responses.
Sheeks

 

[Sheeks]

Hi

Here I am with an update. I would like to say that I am still confused. The neurologist I saw did not even really give me the time of day when I saw him. I’m not sure if you can appreciate my perspective, but when you are generally worried about your health and you work with a health professional who doesn’t really treat you with respect or take the time to be thorough with new symptoms you want to discuss it is frustrating.

I was in his office all of 8 minutes. For what I was able to show, (and he didn’t really even look closely) he suggested the symptoms I have are stilll benign. Moreover he doesn’t even given any neurological explanations to why. I tried to ask more questions and he interrupted me to say you can get a second opinion and when I told him that I was he immediately invited to pick up my shoes, that I was trying to put on In his office and said and I quote “can you pick up your shoes and put them on out in the waiting room, I’m just a bulk billed neurologist I have other patients to see”. When I didn’t gather my shoes quicker enough he then continued to shoo me out then told his receptionist “just bulk bill me I will not need to see him again.”

I was not rude to him, and he was rude to me and this was my experience when I saw him months ago when I raised that twitches had now started in my thighs and had trouble swallowing, which continues to this day, yet this still was not taken seriously, brushed off as stress.

I would like to continue this update by confirming that my ankle surgeon also has confirmed amount of atrophy () in right calf is more than he expects ,(physio also said this) and my tendon surgery doesn’t seem to be improving, but neuro said atrophy not the type he would expect to see in mnd, yet no explanation or further study or tests suggested for why I have weakness in right leg.

The good news is that I received a message from the 2nd neuro I sent a referral to months ago, who told me when I rang them that it could take up to 10 months to see him, that he had triaged my case and based on what he read through my letter and referral has deemed my symptoms interesting and wants to see me on November the 5th. He is a private neuro, $390 to see Him so I hope he gives me the time of day.

Unfortunately, the progression of symptoms still fills me with fear. It all began isolated to calves, ( and atrophy was noted in right calf months ago where twitches continue to be the worse, but present in left leg also)- but all excused as part of injury. I told neuro 5 months ago that I had began feeling faint twitches in thighs when I saw him again and now these are full blown in both thighs, and now arms have gone from faint butterfly twitches to big ones I can see and feel all over both arms. So I now have four limbs fasciculating continuously all day and have began impacting my sleep.

Would Benign fasciculations Syndrome progress like this up the body?

Lastly finally got into a psychologist last week who observed my twitching fingers and calf movements and his conclusion was that it looks nothing like any tremor or twitch he as ever seen because of stress and anxiety.

I pray that all the symptoms will stop and yesterday when thinking about my family on my drive to work the other day, I cried almost the whole way I have even dreamt that I had mnd and even died in the dream.

Thanks for your patience reading this. And thanks for your replies in advance.

Sheeks

 

[lgelb]

It seems many of us, including the surgeon, see no reason to jump to MND, but I'm sorry the neuro seemed dismissive. I am glad you are getting a second opinion, and will soon know more.

Meanwhile, grab every second with your four girls...on general principle.

Best,
Laurie

 

[Sheeks]

Hi just an update,

I have had a second opinion on my symptoms from a different neurologist who gave me over an hour of his time in our first consult- told him full story showed him videos of twitches and hand tremors and he took copies to show his colleagues.

His conclusion that it is not likely to be MND (which obviously is not definitive no), however that it is also not normal and the fact that i had been sent home by other neurologist saying it is benign and all caused by stress was not really ok. He dropped the idea of it being some kind of nerve irritability syndrome and that and EMG needs to be done and certain blood tests to work it out. Have had bloods done just waiting for emg. He doesn't think the twitches are sinister in nature.
Meanwhile twitches in my arms are increasing daily and I can just tell that they are going to be like my legs soon- twitching almost always. noticing some now in my neck aswell. Are there any syndromes that anyone knows of that can progress up a body like mine have?
As said before this was purely calves 6 months ago then slowly became thighs with slight butterfly twitches to now firm noticeable ones and now my arms in that order.
He named dropped isaacs syndrome as a possibility, yet i cant find out if this spreads?
Another interesting note is that post ankle surgery now 3 months and ankle does not seem to be healing that well at all?
My MND fear has diminished greatly and i havent googled that much about it at all recently- Its just that these twitches are so annoying .

Thanks everyone.

 

[KarenNWendyn]

We don’t think you have ALS, and apparently neither does the neurologist. Yay! I would recommend you not post until after your EMG just to give us a follow up.

Describing your twitching doesn’t change the conclusions.

Isaacs syndrome is also referred to as neuromyotonia, or peripheral nerve hyperexcitability. It is characterized by muscle stiffness caused by continuous muscle fiber activity. It is often associated with a sensorimotor polyneuropathy. I don’t know if it spreads, but that would be a good question for your neurologist after your EMG, depending on what it shows.

 

[Sheeks]

I know I am being told to wait to my EMG before posting again but, I am now experiencing full blown twitches in my arms. 6months ago it was only calves and feet. Clearly what ever neurological disorder I have is spreading up through my body. The top of my shoulders and even my face have began twitching more. So pretty much other than my stomach there is not one place I am not twitching, twitching in calves and thighs constant and at the same time. Arms still sporadic but given how things progressed in my legs, I can tell it is just a matter of time. Twitch on both sides but right side all the way from feet twitches the most. Stuttering becoming an issue as is not saying words correctly but no one else has noticed or said anything, but I can tell. Beginning to have pain and discomfort in lower back, hips and chest.
Sorry for posting again. But my mental health is really In a bad place.
Do Benign Twitching conditions spread like this?
EMG - scheduled for 21st of December.
Thanks

 

[lgelb]

Yes, benign twitching can go literally anywhere on the body. As you know, the pain you describe doesn't mesh with ALS onset, either. Stretches for your joints in the morning could do no harm as many of us need them to avoid stiffness.

It's the holiday season -- enjoy it with your family. Also, reread this thread to see that by your own report a neurologist spent considerable time with you and he saw no signs of ALS and did not consider your twitching sinister. Don't let the next month fall waste to your self-generated fears. In that spirit, I'm closing this thread. Start a new one when you have an EMG report.

Best,
Laurie