MS/ALS fears...again

[AnxietyReallySux]

Hi everyone. First time posting here and fairy new to health anxiety. I’ve been dealing with it for the past 7 months. It started with some breathing issues...I just knew I had COPD. After a clean CT and multiple visits to the pulmonologist, they sent me to an allergist. Turns out I’m pretty much allergic to everything. About three months ago, started feeling tingling in my hands and feet and overall fatigue. I was convinced I had MS or ALS, but my MRI came back clear and neurologist said everything look okay. I was good for awhile, but now I am having tingling and weakness in my left leg, and I have this weird internal vibrating sensation in my head. To top it off, my tongue/jaw feel like they are shaky. Now my MS/ALS fears are back in full force. This cycle is so exhausting. The vibrating head and tongue/jaw issues are new to me and I feel like that can’t be anxiety. Has anyone every had these feelings and willing to share if/how they went away or how long they lasted?

 

[Cuchculan]

Just think of the word ' Again '. That is the main word in this whole post. We see if often enough. Simply means people are telling us they have had this before. We always read that it was nothing back then too. They had tests done and it was not MS / ALS. So what will be different this time around? Have more tests done and find out they come back negative again. You could go on having tests done every time you feel this way. That would cost money. The results would probably always be the exact same. Anxiety is a strange thing. Does a lot to us. Loads of symptoms. Once we accept this, it can become a bit easier for us. A serious illness does not just stop with how it would make you feel. You would feel that way every day. Anxiety on the other hand can have symptoms that do come and go. Might disappear for a while. Such as when you had your last tests done. That put your mind at ease back then. You could move forward. It is more the anxiety that has kicked back in. Inward thinking. That you have this major thing wrong with you. One that tests found you did not have wrong with you last time around.

 

[matisworried]

i'm sorry you're so anxious but you really have no reason to be. having a clean MRI rules out MS. the fact that you've been looked over by a neurologist and have been given the "all clear" only reaffirms that. please remember that neurologists see hundreds if not thousands of patients and likely deal with MS on a daily basis. i actually had an abnormality on my MRI and my neuro was able to rule out MS after less than a minute of different in-office tests. fun fact: people that get diagnosed with MS usually don't have any idea they have it.

regarding ALS, i have a friend that has it, my ex-father-in-law died from it last year and a musician i've loved since high school recently died from it. you do not have that, either. ALS is rapidly progressive and doesn't start with tingling and weakness. what you're describing isn't even considered "weakness" in terms of ALS.

i'm no doctor but i'd place all my money on your symptoms being anxiety-based. when i was in the heights of my MS fears, i had muscle twitching, weakness, gait issues, spastic muscles, numbness and tingling... i had soooooo many symptoms that there was no way i didn't have it... but i didn't. your brain is very powerful, especially when coupled with anxiety. have you tried treating your (health) anxiety? i'd highly recommend looking into therapy if you haven't. learning CBT techniques can really be a gamechanger. also, if you're a googler, stop immediately. it'll always cause more anxiety than it relieves.

 

[AnxietyReallySux]

Thanks both for your replies..and reassurance. I read somewhere that there have been cases where people have MS even though the MRI is clear. These are the types of things I fixate on. Also, the vibrations and jaw shaking are probably freaking me out even more. Because then I also start to think about Parkinson’s. This is all I can fixate on. I have two young kids and this completely affects my mood and I get so short and grumpy...I hate it. I have tried anxiety meds in the past, but had horrible side effects. I have thought about trying CBT, so need to look into that.

 

[alcrth6]

i'm sorry you're so anxious but you really have no reason to be. having a clean MRI rules out MS. the fact that you've been looked over by a neurologist and have been given the "all clear" only reaffirms that. please remember that neurologists see hundreds if not thousands of patients and likely deal with MS on a daily basis. i actually had an abnormality on my MRI and my neuro was able to rule out MS after less than a minute of different in-office tests. fun fact: people that get diagnosed with MS usually don't have any idea they have it.

regarding ALS, i have a friend that has it, my ex-father-in-law died from it last year and a musician i've loved since high school recently died from it. you do not have that, either. ALS is rapidly progressive and doesn't start with tingling and weakness. what you're describing even even considered "weakness" in terms of ALS.

i'm no doctor but i'd place all my money on your symptoms being anxiety-based. when i was in the heights of my MS fears, i had muscle twitching, weakness, gait issues, spastic muscles, numbness and tingling... i had soooooo many symptoms that there was no way i didn't have it... but i didn't. your brain is very powerful, especially when coupled with anxiety. have you tried treating your (health) anxiety? i'd highly recommend looking into therapy if you haven't. learning CBT techniques can really be a gamechanger. also, if you're a googler, stop immediately. it'll always cause more anxiety than it relieves.

What does ALS start with if its not tingling/weakness?

 

[bin_tenn]

What does ALS start with if its not tingling/weakness?

Progressive muscle weakness (clinical, not perceived) is apparently the most common initial symptom, but it can vary.

 

[alcrth6]

ugh that's what I feel like I have. And itching.... nervous to see doctor next week.

 

[matisworried]

What does ALS start with if its not tingling/weakness?

"weakness" in terms of ALS is very specific.

please read the following for an explanation:

Muscle Twitching Help; Foot Drop Strength Tests & ALS

If you have muscle twitching and have googled twitching muscles, you’ve most likely stumbled upon some links for the deadly disease ALS. You now might think you have ALS, since muscle twitching is a symptom of …

scarysymptoms.com

what you are experiencing is almost certainly perceived weakness, which is not the same thing.

also, ALS is rapidly progressive. from onset to wheelchair was less than three months for a friend or mine. my former father-in-law was in hospice within six months of onset. it's not something that will be questionable or have you guessing.

my money is on your anxiety being heightened and your brain working overtime to convince you something serious is going on when there isn't.

 

[bin_tenn]

ugh that's what I feel like I have. And itching.... nervous to see doctor next week.

I agree with @matisworried . Progressive muscle weakness, as I mentioned, is clinical with ALS. Not perceived. I don't know much about ALS, fortunately never fear it myself, but from what little I've heard / read it's usually very obvious. People are unable to walk suddenly, or they can't hold onto things, can't do other things they used to do with ease. But it's even deeper than that, because without exercise, for example, one's muscles can also become a bit weaker than they used to be.

 

[matisworried]

I agree with @matisworried . Progressive muscle weakness, as I mentioned, is clinical with ALS. Not perceived. I don't know much about ALS, fortunately never fear it myself, but from what little I've heard / read it's usually very obvious. People are unable to walk suddenly, or they can't hold onto things, can't do other things they used to do with ease. But it's even deeper than that, because without exercise, for example, one's muscles can also become a bit weaker than they used to be.

YEP.

from what i've read, it's like your brain flips a switch and just sorta turns part of your body off. in the case of the musician i mentioned above, she woke up one day and literally just couldn't make a fist anymore. my former father-in-law suddenly couldn't swallow food anymore.

 

[bin_tenn]

YEP.

from what i've read, it's like your brain flips a switch and just sorta turns part of your body off. in the case of the musician i mentioned above, she woke up one day and literally just couldn't make a fist anymore. my former father-in-law suddenly couldn't swallow food anymore.

Yep, that's basically what I've heard. I think the same can be said for just about any serious illness though. The difference between real illnesses and the ones we perceive tends to be that the serious illness would make itself extremely obvious, but the perceived / made up illnesses are very subtle.

 

[matisworried]

Yep, that's basically what I've heard. I think the same can be said for just about any serious illness though. The difference between real illnesses and the ones we perceive tends to be that the serious illness would make itself extremely obvious, but the perceived / made up illnesses are very subtle.

very true. if you are second guessing your symptoms or you aren't sure if it's in your head or not, it's probably in your head.