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jm5834

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Well for starters I found this website in a state of my panic and have read others threads about similar symptoms in a search for reassurance. I have been very apprehensive about posting here because I know a lot of people are probably just overexcited or scared and have convinced themselves they have this horrible disease and maybe that's all I have done too, I don't even know at this point. And btw ,my heart goes out to all Pals and Cals, I hope and pray for a cure or at the very least better treatments in the very near future.

Now to give a little background about myself I am a 27 year old male, no family history of als to my knowledge, who does construction and have worked out for about the past 3 years 5 days a week so I guess you could say Im a pretty active guy. Well up until about November then I started slacking off and haven't worked out regular since.

But enough rambling, this all started back at the end of January. I thought it was a disease that happened exclusively in middle aged people to older people but I happened to watch a documentary that was about younger people (my age and younger) who are suffering with it. And my hearts just went out to all of them, to see people living with it I just felt a great sympathy for them and it kinda shook me up to see it.

Anyway fast forward a few days and I start getting what I perceive as a clumsiness/weakness in my hands. Frequently dropping tools at work, and what I felt like was a weakened grip. But at that time I wasn't too worried, thought hey its all in my head, I'm just more aware because I saw that documentary.

But them my muscles started twitching around Febuary 14th. Started with mostly one thump twitches and progressed to more frequent. They were mostly in my calves at first and at times constant, never stopping. And very fine twitches in my calves. I felt them and then I looked at them which freaked me out even more. They have moved all around, neck, back, butt, thighs, shins, hands ,feet, stomach. Although they seem to have gotten less frequent, which I would think is a good sign.

Symptoms since end of January:

-Stiff muscles, especially calves and thighs.
-Extreme fatigue, sometimes I feel like I'm gonna go to sleep behind the wheel on the way home from work
-Muscle pain and cramping, mostly hands and feet
-Somewhat of a nasal speech that comes and goes( my fiancée says I sound normal) Neuro said probably allergies
-My hands look thinner, almost wasted between thumb and pointer finger

Well anyway I made an appointment with a neurologist and saw her back in Febuary for the first time I believe it was and she was very kind and understanding but somewhat dismissive saying that it would be incredibly rare for someone my age, and that its not the first time she has seen a patient around my age with the same worries. Anyway she did a pretty thorough clinical and said everything checked out.

Took her at her word, but my symptoms didn't quit so I ended up back, this time requesting an EMG to which she refused. I don't have any insurance and she said it would be criminal for her to do one. That it was expensive and unnecessary , but for me I was willing to pay just for the peace of mind. But she still refused to do it.

Well I went back Tuesday and she didn't really seem concerned still. Didn't really do a full clinical just checked my knee reflexes, and arms, and foot strength. Looked at my soft palate after my complaints of nasal speech and said it rose symmetrically and looked totally normal. She put me on Lexapro to treat my anxiety which I just started yesterday, fingers crossed it will start working soon.

My fiancée and parents seem to think I'm crazy, but the symptoms are real and I just have this feeling of impending doom. I thought of going and getting a second opinion but I cant even afford it because of what I already owe for medical bills not to mention I would have to wait probably at least a month. I had my blood tested( thyroid was normal, and no vitamin deficiencies),

Physical from GP, 3 Neuro appts. (no EMG, because she refused it). And also some appointments with a counselor and now having to pay for meds (all out of pocket). Im getting married in 3 weeks, and now I have a child on the way and I feel like I should be enjoying these times but I cant even seem to because I cant shake this worry.

And if I didn't have the symptoms I wouldn't be worried but the symptoms just seem to keep getting worse. Anyway, any insights or thoughts would be appreciated, and again my heart goes out to anyone dealing with this disease. I pray for a cure very soon.
 
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ShiftKicker

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Hi there-

When people go to a neurologist or doctor and list the symptoms you are experiencing and tell them they are worried about ALS or demand tests that are used to eliminate/diagnose ALS as a possibility, there is definitely cause to think it's anxiety. No one is denying your symptoms are real, just that they don't indicate ALS.

Keep working with your doctors to get to the bottom of your symptoms (which does include working on your very clear health anxiety) and see how you are in 6 months. Your neuro did have a baseline of strength and reflex response for you from when you saw her the first time- it would be very clear to her, should you have something progressive, if you were to return in a few months and those measurements had changed.

In the meantime, read here: https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html to reassure yourself.
 

jm5834

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Hey ShiftKicker, thank you so very much for your reply. I totally understand what you are saying. Because of my health anxiety I probably jumped the gun and was quick to point to one particular thing prematurely. I can definitely understand why she would be quick to diagnose anxiety. I was a nervous wreck the first time I went in. And I even told her I have been somewhat prone to health anxiety in the past. I do have a follow up with her in a month to check in and see how things are. Again, I thank you for your reply and taking the time to help me.
 

lgelb

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Yes, the symptoms are "real" -- you feel what you feel and you see what you see.

But what we and your two docs see is that you let your anxiety run away with you. It happens. A new marriage and a baby, while very exciting, are also very stressful and really put a lot of "what-ifs" on your radar.

You are doing the right thing by looking to get a handle on this anxiety before it takes over not only your body and mind but your health and your life. Keep it up, but remember also that living well and helping others less fortunate is its own therapy.

All the best wishes for a healthy, happy future with your new family.

Best,
Laurie
 

jm5834

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Thank you so much for your reply and well wishes, Laurie. And I totally agree. I was doing better for a period of time, but then when finding out about the pregnancy(although so excited) I couldn't help but begin to wonder again if I do have this disease, or something else, and won't be able to be here for my child. It's gotten me back in church and appreciating all the little things in life, and I just wanna show love to everyone and let all the little things go. But yet, it always kind of stays in the back of my mind. I plan on continuing with the medicine, prayer, and therapy in hopes of putting it all behind me. Thank you very much for taking the time to reply Laurie, and best wishes to you as well.
 

jm5834

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Hey sorry to be back again, but my twitching has come back with a vengeance and is very visible and I'm very scared. I cant sleep at night because they are always firing off. I know it isn't indicative but I am just worried. And I read that if you flick the muscle it will fasciculate in ALS and I noticed when flicking my shoulder the muscle kinda dents in then comes back out. Just does it once but it looks like a fasciculation. I took a video but I don't know how to post it.

https://www.youtube.com/watch?v=LoVVTafkkuI

The only reassuring thing at the moment is that my strength still seems good. I did 55 pushups last night and I jumped onto the bed from a standing position (30 inches). I also hopped up a flight of stairs with only a little difficulty. Then I tried running up them and I did my left ankle felt a little weak, but I did it. And then I did a test of getting out of a chair on one leg and I could do it on both sides on but just not a really deep chair.
 
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ShiftKicker

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From the clip you've posted, the only thing it really indicates is you've been tapping that spot repeatedly quite a bit based on the redness. Perhaps this is something you need to visit a doctor about to demonstrate, as footage online really doesn't do anything.

Coming here to tell the people all the things you can still do does not do anything other than convince the people here that you do still not show signs of ALS.

Keep working with your doctor to track down the cause for your concerns, but your questions here have been answered. Posting more of the same, despite the reassurances and answers you've already received makes it clear you are continuing to feel anxious and it is time to address that. Please understand that the people here can't actually do anything for you- not because they don't care, but because posting here to try to convince them you have what you are worried about does nothing to actually find the real cause of your symptoms.
 

jm5834

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I apologize if I offended. I just am looking for insights from people with experience because I feel very scared and alone. I only posted that in hopes for reassurance that I wouldn't be able to do those things if I indeed had ALS. I am still working with my doctor and have a follow up in about a month and have been on Lexapro for my anxiety. I really don't mean to offend or brush off any insights or advice I just have never been this scared in my life. I feel as though ultimately I'm going to hear those words that I have it and the neurologist still wont do am EMG. I pressed for it twice and she refused. And I cant get in with any other local neurologist. I just don't understand why she wont do it for my peace of mind.
 

jm5834

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And thank you for your reply shiftkicker, I really appreciate you taking the time to give your insight.
 

Clearwater AL

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JM, I have no idea how your thread has gone this far. You are a classic case
of health anxiety, hypochondria and… pre-nupt jitters.

You’ve stated you are about to get married... “My fiancée and parents seem to think I'm crazy."
That's not really getting off to a good start. Her parents too?

Apparently she is pregnant also. You're about to be a father. You wife doesn't need
two babies to take care of. Get a hold of yourself. Sorry. Somebody needs to be blunt
with you.

(I’d be worried she may get second thoughts the way you are carrying on.) :)

JM, you’ve pushed a Neurologist twice for an EMG and have been refused.
Lucky you have found one who isn't willing to pile on the bill. You wrote she
said it would be a crime if she did.

I wish you could know what many of us really thought when you posted
that video. :)

There is a scenario called hypochondriasis. A person in a cycle of health
anxiety.

You are being convinced that your symptoms are caused by a terminal medical disease…
you become anxious and obsessed with frequently checking your symptoms. As this cycles on…
this fear creates dopamine in your brain.

As your hypochondriasis continues over time your brain may actually get
like an addiction for more. The cycle continues.

Thus, you visit doctors repeatedly despite tests showing that everything indicates
you do not have ALS. You may have other issues but your brain keeps
pulling you back to ALS.

You can help yourself break this cycle of fear by logging off this Forum and
work with your doctors. And… consider telling your Neuro you are having a
hard time letting go of ALS.

Hope your doctors help you onto the path of good health.

Let ALS go. Get quick help for your hypochondriasis quickly before you
get married. Hoping the best for you.
 
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Bestfriends14

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I will put my two cents in here, as well, so you will hopefully get the psychiatric help you need. I watched your video and, to be honest, was extremely troubled by it. You're harming yourself repeatedly to the point of causing damage and redness to the skin. And all because you think you have a disease, which you totally do not evidence having.

You're getting married and having a baby and before you commit to either of those, it is imperative to get help for your health anxiety. If you are so disabled because of this unfounded fear, how in the world will you ever be strong enough to be there for two people who will need you? Please let this sick thought of having ALS go and continue with the psychopharmacolohical meds and seek cognitive behavioral therapy to help overcome the words your mind is telling you.

Best of luck to you in the future, but please leave this forum and stop pestering people who actually do have this disease.
 
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