Hoping to gain insight

[Scared16]

Hello to this site. First and foremost, I want to say to the people already dx'd that I mean no disrespect in visiting here for more information. I simply am worried to the point of losing my sanity and want help from those who know best.

My symptoms began three months ago with numbness in my right hand. Then would quit. Then my left. Then again my right. All intermittent. Then the numbness went up both arms. Then burning and pain began in both.

At that point I visited my endocrinologist to ask if my hypothyroidism could be playing a part. He said no because my numbers were stable and referred me to my first Neuro. She suggested MS, and my worries began there.

I had an MRI of my Brain and cervical spine (with contrast) which revealed cervical stenosis at c-4-5 diffuse to a bulging disk. I then elected to have a spinal tap for good measure. Negative for Lyme and MS. My blood tests for a gazillion different things were all negative save for elevated Lyme levels, but not cdc diagnosable. We are treating me for that just in case.

Scheduling a nerve conduction test was taking too long with that hospital, so my endo sent me to another Neuro at another hospital. I asked again about MS and also said I was concerned about ALS. She did a full exam and then the NCV and said no ALS - my motor nerves were great and no weakness. Just ulnar nerve compression in both arms. A later MRI after a consult with a Neuro surgeon for my spine issue saw stenosis in my lower spine also.

I cannot get ALS out of my head though. I am on leave from work due to all this. My anxiety is at an 11. I'm having fascilications all over. I feel like I am weak but can do all things. I look at my tongue over and over. I feel like I can't swallow all the time. I am literally consumed by this fear.

I've seen a psychiatrist and am on some meds for this, but I still can't rid ALS from my mind. To me, if I haven't had the Emg, I won't know. I have muscle aches and twitches and am literally at wits end.

In your opinions and from this info, do I need to hang ALS up and listen to my docs? Or press for an Emg? I am a 37 y/o female, btw.

Any insight is appreciated.

 

[lgelb]

Hi 'Bama,

There is no ALS in your picture. Since you have disk lesions in your neck and lower in your spine that are likely connected to your symptoms, as well as damage to nerves in your arms, I would have thought your doc would have ordered physical therapy, a standard first line.

PT, possibly front-loaded with some massage therapy, can also help you with a home exercise regimen and tips (e.g. how you sit or stand at work/ home often contributes) to help you avoid exacerbation. I do some simple exercises myself when my wrists/hands are bothering me, harvested from YouTube. Walking, swimming, hot tubs are good.

Injections and surgery are options down the road if PT can't help, but it often does. Always get a 2nd opinion before any kind of surgery.

Take the time to find the PT who is best equipped to help you, and I guarantee you can feel better than you do now.

Best,
Laurie

 

[Scared16]

Thank you, Laurie. I am a 100% kind of gal, so I guess I was just thinking that without the EMG, I really don't know for sure. I appreciate you giving me some extra confidence.

 

[affected]

I can tell you 100% that you have zero indications of ALS. Don't ask me to engage in it further, but as you want to trust us as the ones who would know, I'm certain. Do not push for an EMG, spend your money on more dedicated mental health assistance.

 

[Scared16]

Thank you, Tillie. I appreciate your insight and will indeed continue with the mental health professional I am currently seeing. Prayers to you and again, thank you for taking the time to answer me back.

 

[Atsugi]

Since you're still here this evening, I guess you're still concerned about ALS.

The whole time I was reading your post, I was thinking 'why in the world is this person on an ALS site?' You laid out in black-and-white that you don't have any symptoms of ALS, then you found the probable cause of your discomfort, and you even have specialist MDs examining you and confidently putting their licenses on the line to say you don't have ALS.

So think about this. If you see a coin and it's heads, and everyone around you looks at it and says it's tails, and some coin experts come in and say it's tails, and you STILL think it's heads, then you need to stop wondering about the coin and start questioning yourself. Do that with the shrink. I sincerely wish you good luck conquering that anxiety and I hope you are successful.

 

[Scared16]

Mike- not one person has put it to me like that, and I literally think you truly have put into words what the real problem here is. Me. Thank you for taking time to reach out. Prayers to you now and in the future, sir.

 

[Scared16]

Back tonight. Quick question. Was at dinner, and I went to pick up my cup. My hand was burning and tingling. Was so hard to grip the cup. I did but it was hard. Is burning or tingling and things getting harder to do a symptom of muscles dying? I'm so sorry to post again, but I am beside myself with this.

 

[ShiftKicker]

Nope. Burning and tingling is sensory, not motor. If you read the "READ BEFORE POSTING" thread, it would have explained this. Please do so.

This is not a health anxiety forum. This is a support forum for people who have been diagnosed with ALS, or are caring for someone afflicted with ALS. You have been answered several times by those who are very experienced in addressing ALS issues. While your symptoms are worrisome to you, they are not ALS symptoms. The burden of your health concerns must be addressed elsewhere- not on an ALS forum.

Best wishes

 

[Scared16]

I apologize. Just scared with all that is going on. I will refrain from posting again.

 

[KimT]

Please stop posting here. What you are experiencing is NOT ALS.

 

[gooseberry]

With als you simply stop being able to do things. There isnt numbness or tingling. I have c4 compression and stenosis in my low back. I have cramping and fasciculations. Deep tissue massage helps me more than anything.

 

[Scared16]

I am so unbelievably sorry to post again. My question to the group is about bulbar onset. I know you will all think it is just my mental state, but my tongue feels very swollen to me and I am swallowing non stop ... thus finding it hard to swallow. My food is getting stuck at times. I have tried Xanax in addition to the other "mental" drugs I am on. Does bulbar present in this fashion? I had a tinge of vocal cord issues this morning, but they cleared with me clearing my throat. Again, I am just wondering about bulbar and how it presents. I am not trying to be annoying or crazy. Thanks to all of you who know far better than I for any insight.

 

[starente15]

You are not presenting with ALS but you ARE increasing your anxiety tremendously by continuing to research ALS symptoms. Your best bet right now is to seek some treatment for anxiety and stay off the internet. If your new symptoms are troubling, book another doctor appointment and seek a medical opinion from someone who can examine you. Best of luck.

 

[Scared16]

Thank you for your reply. I just don't understand why this is all coming on so quickly. I am seeing a neurologist tomorrow morning to look at my mouth and examine me thoroughly again.