Terrified I Have ALS

[jac2002]

I’m 33, almost 34. I was diagnosed with a vitamin b12 deficiency in December of 2020, but have probably been deficient my entire life. My diet is bad, my sleep isn’t great, and I recently started exercising twice a week, lifting weights and I am trying to start walking 30 minutes a day. I have neuropathy and tingling. I also have knee instability and pain. My knees hurt walking up steps and I’m always afraid I’m going to fall coming down steps, like my knee buckle or suddenly go out. These symptoms come and go. I had a head CT in December of 2020 and an EMG/nerve conduction test in March of 2021. All came back normal. Every time that I have any knee pain or balance issues, I’m terrified that it’s ALS or MS, that it’s suddenly appearing. My doctor does the push/pull strength test every time I see her and she says that I have no weakness. I’m just terrified that it’s suddenly going to appear, even though my doctor and neurologist have told me that I don’t have ALS. Should I get a second opinion? Could they be wrong?

 

[ShiftKicker]

Hello-

Please read here: Read Before Posting for reassurance, information and advice about how to approach things if you are concerned about ALS.

From what you will read above, you don't describe ALS. It sounds like you have a family doctor who knows you well and has explored a variety of pathways with you already. It's also pretty clear you have not been reassured so far. Would a second opinion reassure you? If so, by all means seek one. However, it might also be time to address your very clear anxiety, because it's driving you to focus on a disease you show no signs of having. This must be affecting your day to day thoughts and activities if you are struggling enough to be posting on an ALS forum.

This is not a dismissal of any of your physical symptoms, only that your anxiety about ALS is overriding your ability to believe your doctor about ALS. I really hope you keep working with your doc for the neuropathy- and seriously kudos to you about improving your diet and physical activity levels- that's really hard work to begin with. A few sessions with a physio or personal trainer could be really helpful in working out a plan you want to stick to and build from.

Take care

 

[jac2002]

Thank you for the reassurance. I feel like anxiety is the driving factor because I’m afraid to get a second opinion because I’m afraid the second opinion will come back as ALS, even though my EMG was only positive for neuropathy, which is not a sign of ALS, correct? I am trying to find a psychiatrist, I’m on meds, but I just feel almost hysterical all the time worrying that it is ALS.

 

[lgelb]

Correct.
If a psychologist, social worker, or licensed mental health counselor is easier to see, even via telehealth, I advise you to do it. Meds can only do so much and anxiety can truly ruin your life.

 

[jac2002]

Should the instability in both knees worry me? It feels like my left side is weaker, but I also have actual pain in my knees. I’m almost afraid that I’m so anxious that I’m making myself physically manifest symptoms.

 

[lgelb]

Ding, ding! The mind is very powerful and when you are worried about something, behold, your mind can make it come to pass.

A question like whether perceived instability should worry you is best answered by the two docs that I am sure will be happy to reinforce their lack of concern re ALS.

"Feeling weak" is not evidence of anything, really. That is why docs test your strength.

Ask about a PT evaluation for the knee pain and feeling of instability. There are many possible reasons for it (including lifting and working out that you are not doing correctly or are doing too much too soon), and also many possible solutions.

 

[jac2002]

Pain is not a symptom of ALS, correct? I’m able to walk on my tiptoes, lift weights, etc. I’ve never had very good balance and surely the EMG would have picked up ALS in March of 2021? I’ve had knee pain for years, I’m just afraid that it is extremely slow moving ALS or I’m having regressions or something.

 

[ShiftKicker]

Please read the link I provided you. You really are asking the questions that are already answered there.

 

[jac2002]

I am trying, but I’m just so afraid and want reassurance that it isn’t ALS.

 

[Nikki J]

Your doctor and your neurologist said it wasn’t Shiftkicker told you it didn’t sound like that. laurie told you too. I will make three. But reassurance doesn’t work. You need to sign off from here. Block als sites stop googling and get a counselor. That is your answer. Not seeking another neuro. We have seen people go to 7 neuros because they didn’t treat their underlying issue - health anxiety.

We can’t hold your hand through this

 

[Clearwater AL]

Jac, did you read the reply from Nikki J above?

Now you are reading an old thread from Feb 21 last year "Could this be ALS/ Familial." ???

And now checking ShiftKickers profile. ???

You are feeding your severe Health Anxiety to a point you will end up needing serious
professional help to break your spiraling cycle. Stop trolling this site.

No need to reply.