Hello. Please advise. Greatly appreciated.

Olily0219

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Hello! First, I’m so sorry for all those affected by ALS. Your strength and willingness to host this forum is so helpful.

I am a 49 yr old woman.About a year ago I developed pain in both feet, I attributed it to a workout injury to my right foot, or the fact I always wear high heels. My feet hurt so badly that I was certain something was wrong. I had a new job and didn’t take time to see a Dr. Eventually (many months) the feet stopped hurting and I developed a cramp in my right calf. It hurt so badly that I went to the ER thinking I had a blood clot. No blood clot. I followed up with my PCP who did bloodwork and an ANA panel The leg pain/ heaviness/ tightness started in my right leg but also affected my left just not as bad.

In the middle of those symptoms I developed severed abdominal spasms, pain and rigidity after eating. I had a CT scan with contrast, and a internal vaginal ultrasound that showed nothing. I was also drinking several glasses of wine sometimes 3 or 4 nights a week. I just accepted my symptoms and continued to push through. I had a new job and very little time to keep going to Dr. appointments.

This has been going on for about a year. I’ve taken a new job and waiting for my insurance to take effect, so right now I cannot see a Dr. One night while looking on the internet, I discovered that twitching was a part of ALS. That night I realized I’d been experiencing twitching for some time in addition to the painful muscle tightness, and pain in my calves. I feel like my muscles are weaker in that I just feel fatigued and soreness in my arms and legs. I can still raise them and exercise.

Basically I’m a stressed out mess! I’ve cried and worried constantly. I have no joy right now thinking about the fact I have no insurance, and all these scary symptoms. In the last week, I’ve completely given up alcohol and started taking Magnesium, B-12, Vitamin D and COQ10. My twitches are less, but my right and left calf are still tight and my right calf still aches. It’s completely controlling all my thoughts! I’m so worried I have ALS. Please tell me your thoughts about my symptoms. I would really appreciate it.
 
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Kristina1

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I'm sorry for your symptoms, you definitely need to work with your doctor to figure out what's going on, but the good news is it's NOT ALS.

ALS does not start that way, and sensory symptoms, like pain, tingling, and numbness are absent in ALS. ALS starts with painless, progressive weakness. With ALS, you do not "feel" weak, you feel normal, but suddenly find you can no longer do something, like button your shirt.

Twitching is not ALS specific and can be caused by hundreds of things, most of which are treatable and not serious, like stress, caffeine, or vitamin deficiencies.

Good luck.
 

KarenNWendyn

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Ditch the high heels and do calf (Achilles) stretches.
I agree with Kristina — you do not have ALS.
Twitching means nothing.
 

Olily0219

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(quotes removed)
Thank you so much for taking the time to respond. It means the world to me. I’ve realized that I have some issues going on, obviously I don’t know what, but this has made me realize how each day is a true gift that I will never take for granted again. My prayer is for us each to be well. God bless!
 
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Olily0219

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(quotes removed)

Kristina1,
Thank you for responding to me! I’ve been so consumed with fear and worry over insurance should this not be good. I have very little support and have been terrified to confide what’s going on to many people. Thank you for your kindness! It means so much.

And may God bless you!
 
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Olily0219

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Please know that I’m deeply grateful for all the time and effort you take to read and thoughtfully answer my concerns.

I pray we all stay well during Corona. I’ve self quarantined and have tried my best to educate others on doing so!

I can’t seem to understand my calf tightness - aches (right leg mainly for about a year daily) right side neck pain (daily) and daily, random body twitches. I have been getting headaches lately. I wake up with right side hip / buttock pain daily sometimes. I still cannot go to the Dr., as I do not have insurance yet. I’m a basket case daily testing my reflexes, searching online and feeling unwell.
Any further thoughts are so appreciated!

Thank you
 

KarenNWendyn

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Most likely the tightness results from mechanical imbalances. A physical therapist could really help you. If it’s not possible for you to see one, a good stretching program and yoga could help.
 

Olily0219

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Most likely the tightness results from mechanical imbalances. A physical therapist could really help you. If it’s not possible for you to see one, a good stretching program and yoga could help.
Thank you for responding. I keep reading how ALS and MDN presents with finger pain or calf pain that goes on for a long time as the only symptom. I feel weak and wonder if long term pain / stiffness / twitches can be a sign of ALS or MDN. I don’t mean to whine but I’m so concerned and I keep seeing stories on the internet of people experiencing signs like mine and it turning out to be ALS or MDN.
 

Olily0219

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Thank you for responding. I keep reading how ALS and MDN presents with finger pain or calf pain that goes on for a long time as the only symptom. I feel weak and wonder if long term pain / stiffness / twitches can be a sign of ALS or MDN. I don’t mean to whine but I’m so concerned and I keep seeing stories on the internet of people experiencing signs like mine and it turning out to be ALS or MDN.
Also, just stiff and sore in neck, upper arms, legs daily, although I haven’t exercised in 4 days. ANA panel showed nothing months ago.
 

KarenNWendyn

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That’s not ALS. You really don’t belong here.
 

Olily0219

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That’s not ALS. You really don’t belong here.
Thank you Karen! I love you for dealing with me. I will leave, but know that I will pay your kindness forward and you have a special place in my heart! I know this site brings all the crazies out and right now, I’m one of those with a mysterious ailment that’s overriding and kicking every anxious thought.
Thank you again and God bless you!
 

Olily0219

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Ditch the high heels and do calf (Achilles) stretches.
I agree with Kristina — you do not have ALS.
Twitching means nothing.
I pray you’ll respond to me and let me know what to make of this new abdomen wasting discovery.
While I listed all the symptoms I’ve had for the past year, I failed to describe the intense abdominal cramps and extreme abdominal rigidity in detail. This is something that happens several times a week and has for a year. I have no idea what triggers it, but I’ve noticed that I have what looks to me as abdominal wasting. Right under my chest, there’s a hallow / intention that wasn’t there before. When I have abdominal cramping, rigidity, it lasts anywhere from 30 minutes to hours long. I first had pain / cramping in my feet, legs and abdomen, now have noticed wasting and weakness of my abdomen and abdominal area. Couldn't this be an ALS presentation?? I also feel weak in my arms, hands I’m not one to make up symptoms. I go and go even when I don’t feel well, but I’m fatigued.
 

Bestfriends14

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I'm.not sure at this point if you're treating this forum as a joke or you are being serious with your question. You've been told you don't have ALS and to please move on. Yet, here you are again with a question that would have nothing to do with an ALS forum but a question that you should be asking your doctor. So, for the last time,you don't have ALS, but you do have extreme health anxiety. I'd suggestion working on that.

Good luck to you.
 

Olily0219

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I would never treat this as a joke. I have done my best to read and reread all about ALS online before coming here with questions. I have done my best to ask thoughtful questions based on things I’ve read in many ALS presentations. Without firsthand knowledge, I have no idea if what I’m suffering with is valid or not. I didn't mean to upset you. I’m sure anxiety is a factor for me as I’m dealing with symptoms of something, but not sure what. :-(
 

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The only thing we can say is that instead of reading all about ALS online then coming here to question us about it all, go and read this through three times. Yes, three times, as there is a lot to absorb.
Then go back to your doctor and ask for help - a telemeeting with your doctor may be appropriate considering what is happening in the world just now.


That link above is our official position and I'm betting it will answer every question raised by searching the internet.
If anything you read in your searches conflicts with this post, don't bother asking us. We wrote this post so our terminally ill members don't have to keep typing the same thing over and over. It is our official position. Please respect that and go get help. You don't have a single ALS symptom and that is fantastic news. Whatever it is, we only deal with ALS here so need to ask you to move on from this.
 
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