I’m so frightened

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TeriC

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Hello Everyone! First, I’d like to say that I’ve been reading many messages and I’m humbled by your strength and positive attitudes. I’m writing today in the hopes that I can get some help from those of you living with this disease. I’m so beside myself that I can barely function. For many years, I’ve had little muscle twitches in my calves, did not think much of it. Within the past six months, I noticed my calves being stiff, but walking fixes it until the next day and sometimes even longer.

In 2018, I went to an orthopedic doctor for loss of range of motion in my neck. He said it was muscular and poor posture and fixed the issue with chiropractic and ant-inflammatory meds. I got lazy with excercise and found myself this past May asking for an Ex-ray because I also have low back pain. The Ex-ray showed arthritis and I’ve been in physical therapy. Since starting physical therapy in May, my back muscles are constantly tight, burn and are stiff! I did not have this prior to starting therapy. Also since starting therapy the twitches in my calves are frequent especially right after therapy and I now have a few in my right thigh.

I went to a spine doctor out of worry that the therapy actually made me feel worse with the tight back muscles. I had an MRI today of the lumbar. Also,I’ve noticed the past two weeks that my fingers are stiff. First my thumb and index fingers on both sides and today my left pinkie. It feels like my hand is stiff and I had trouble with certain movements such as extending my arm to search through papers, it didn’t seem to want to work. Yesterday, I tried singing and my tongue felt stiff and it was hard to form certain words and I can’t get too high. Today, I feel this same tongue issue while talking!

The spine doctor put me on an anti-inflammatory and muscle relaxer. I’ve only taken half a pill of the the muscle relaxer and it did not relieve the back muscle issue. If I stretch, or use a massager, my back muscles loosen up only to return the next day or two. The anti- inflammatory does seem to work well on my joints abs my lower back pain is almost gone.

So, why and I on this forum? I’ve done what no person should do and I’ve been on the internet reading comments from als patients with a very similar story as mine and I’m scared. I also had a fall back in April, the toe of my sander caught on something. A couple of times it’s felt like my right food drops and my right toe stubs. I sit a lot at work and have exercised very little. I did request to see a neurologist, and gave an appointment next month. The in office tests show no weekness ( strid of toes, geeks, squeezes hands, pushed with legs) and reflexes seemed good according to the spine doctor. He has no knowledge of my other symptoms. Did any of you experience my symptoms? Thanks in advance to anyone who takes the time to respond to me. I understand it’s asking a lot of you.
 
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lgelb

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I do not see any connection between your story and ALS. If a doc prescribes meds, you have the right to ask what the provisional diagnosis and treatment plan is, and of course to have MRI results and any other tests factored in. If PT seems to be going backward, a second PT evaluation may be worthwhile. Exercise, walking, and stretching can all be helpful. Chiro care can be problematic.

Best,
Laurie
 

affected

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Totally agree with lgelb, I can't see even a remote connection to ALS and can't imagine any PALS (als patients) reporting a similar story. What I can tell you that may reassure is that many people read accounts online, and without medical knowledge then think, oh that is what I have.
Please read this really carefully as it should dispel all the things you have imagined from reading so far.

Definitely keep working with your doctors.
 

TeriC

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Laurie,
Thank you so much for your response. I forgot one big piece of information because it wasn’t happening at the time. For several months, I feel that I won’t be able to swallow. It went away for a time, but yesterday came back. I noticed it while taking a drink. I don’t know if this is anxiety or something else. I feel like I have lump in my throat at times. Thanks!
 

affected

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That 'feeling' is definitely not an ALS bulbar symptom. Please go back and see your doctor as they can examine you, and if it is appropriate can organise a swallow study. You really must work with a doctor, reading things online then coming here to ask about them is not the way to get medical help. All the best.
 

TeriC

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Thanks for your replies. I’m trying not fo bother you. I now have tingling of the tongue and sometimes my lips go numb. My tongue looks like it is twitching and at times a word or two doesn’t make its way out correctly because of this. It also feels thick (sometimes). I’m working with a doctor who from a clinical test (strength and reflexes) does not feel I have als, but honestly, I trust the people who have it more because they truly know the symptoms. To appease me he is going to do an emg on my arms ( have a little bit if stiffness at times in my fingers). Will this emg catch a tongue issue related to als and what is your opinion based on your own experience with tingling and numb tongue. It may be anxiety!!! Ugh
 

Nikki J

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Tingling and numb? No not ALS symptoms. Read again the link affected posted
 

affected

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As Nikki says, if you do in truth trust us, every time you get a fear, read that post I sent you because it took someone who died of ALS a lot of his time and effort to create with great care. It is our official position and answers your irrational fears.
We can't spend our time hand holding people who do not have ALS, but there are anxiety forums full of people who can.
 

TeriC

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Affected, I and many people have reached out because of legitimate fears (despite your opinion) and truly value the responses from those who have this disease or those who have been impacted by it. My issues may in fact not be AlS, but they are dibilitaitng and frightening just as yours was to you or your loved one. I appreciate the responses, but there is no need to lash out at people. I read the note, and it’s not as black and white as you think. I keep everyone on this forum suffering from this disease in my prayers and anyone who has lost someone to this disease, I wish them peace. I work in a church and I hold a lot of hands. I don’t judge if they are worthy enough of my compassion despite my personal feelings about their situation. Being unkind and judging others is not acceptable. I certainly won’t bother anyone in this forum again. However, if anyone needs a caring friend, feel feee to reach out to me.
 

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TeriC, I just read through this entire thread and I don't understand how you could feel anybody is "lashing out" at you. You asked for people's opinions and they gave them. And they explained why they don't think you need to worry about ALS and that you should keep working with your doctors and possibly look into ways to alleviate your anxiety (which YOU said you think might be the cause of your issues). I don't see anybody "being unkind or judging others". Perhaps you should reread the entire thread again.
 

affected

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Teri, your fears are legitimate, but they are not ALS symptoms.
Please, again read that link I sent you as it explains that this forum exists for people dealing with ALS. We simply don't have the resources for anything else and I truly hope your doctor can assist you. We need to understand our limits here so that we can help PALS and CALS. Please do take your concerns to your doctor.
 

Clearwater AL

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Couldn't resist on this one.

TeriC, maybe to help you reflect on yourself...

"I work in a church and I hold a lot of hands. I don’t judge if they are worthy enough of my compassion."

(*if they are worthy enough of my compassion.) "if"... would require your judgement of worthy.

" I appreciate the responses, but there is no need to lash out at people. I read the note, and it’s
(not as black and white as you think)." That's in your judgement.

As Affected wrote....

"read that post I sent you because it took someone who died of ALS a lot of his time and effort
to create with great care. It is our official position"

I hope you get the help that brings you a long and healthy life. But... maybe some reflection will
help too.

Finally... "My issues may in fact not be ALS". Thank your God for that.
 

lgelb

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Let's keep religion in the Religion subforum where it belongs, yes?

Teri, you may not like the way the message was framed but I know it was kindly meant. You do not have ALS and we do not want you to be concerned that you do.

An EMG will "catch" ALS as a whole, whatever the issues that spur concern, which is the important thing. If you need one to be "appeased," by all means, if you are prepared to accept the outcome. If not, it's a waste of a neurologist's time who could be helping someone for whom the results are important.

Please don't post again unless you have an EMG and can report back on the results. It helps others to see how things turn out.

Health anxiety is common and treatable. An evaluation by a counselor is the first step. If that may be an issue for you, I hope you don't let it ruin your life and that of those around you.

Best,
Laurie
 
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