Afraid

[MRB1977]

Hello
I am a 38 year old black female and I am losing my mind worrying about als. I apologize in advance if my post upsets you but I am really losing my mind with this. Back around the end of April I noticed that my arms were not the same size. Mainly my biceps. Leading up to this one day i noticed my hand do something weirf after i was texting. It lasted a few minutes and never happened again. Then around that same time i hit my elbow really hard on the wall. Once I read about this disease I started to panic. I started twitching and have been ever since. I've seen a few doctors all who basically just dismiss me and tell me that while they see the difference in my arms they don't think it's als. But they never tell me why not. One doctor even told me that it was that my arms had alot of fat and one was fatter than the other. When I feel my arms I can tell one has less fat. I feel the muscle in both but they just look weird and when I wear shirts one side is tight in the arm and the other is loose. It's embarassing. Having tried to assure myself im still worried. Now I've developed shoulder pain in the arm that is smaller as well as pain in my wrist. All of this is in the arm that I write and eat with but I seem to do everything else with the unaffected arm.
I guess my concerns are is what I'm describing atrophy? All the docs and nurses say no but they never tell me why. If my arm is noticeably smaller than why makes them determine its not. What are they looking for?
I'm so stressed out and anxious and any help you can provide is much appreciated.

Thank you for your time

 

[affected]

Please use paragraphs as your text is just a clump.

Some of our members use their computer by blinking their eyes, so getting caught in text like yours consumes their energy and time.

Click on the blue link above that says Do I Have ALS? Is This ALS?

Then click on the post at the top titled READ BEFORE POSTING.

How you ended up here is beyond me - you have high anxiety and ZERO ALS. I don't know why you would believe me, a total stranger, when "all the docs and nurses" who have actually seen you say you have no atrophy. Maybe they try to explain why but you don't understand them.

Please understand this site is for people with a terminal illness. You've asked, I can tell you under no circumstances have I known ALS to begin this way. Please return to your doctors so they can get to the bottom of what is going on. Staying off here is the healthiest thing you can do.

 

[skipper66]

Doesn't sound like ALS to me at all. Have they ruled out maybe a form of arthritis? Please don't get yourself worked up about having a fatal disease. I know they are closed right now for the holiday. But, first thing Monday or when they are open call your primary physician's office. Tell the nurse that you have been extremely worried and why. Ask them specific questions as to what they looked for in their tests and why certain things were ruled out. Don't worry unnecessarily about your hands doing weird stuff after texting. It is most likely just overuse. My hands cramp up at times when I use the keyboard at work at times and also at times when I text as well. It's nothing to be concerned about. If your doctor's were even remotely concerned that you could possibly have ALS they would have ordered way more tests. I would just put your mind at rest and log off here. Let your own Dr. figure out what is going on with you. Kim

 

[MRB1977]

Today's visit to my pcp was anything but pleasant. I have severe anxiety and I had a complete meltdown at the doctors office.

So today I told him my concerns again and he measured my arms and my wrists were a half inch off and my bicep was 2 inches off. He was not reassuring at all and made a general comment that it could be the start of als. He pulled up symptoms and started asking me if i was experiencing anything. This made me sick to my stomach and I threw up there.

Another doctor,his boss came in and talked to me and had me grab his fingers and he tested my shoulder strength both of which were above normal strength. They both said that seeing a neurologist would be best to ease my fears but the boss said in his experience he has never heard of somebody having as much strength and mobility as I did.. My Reflexes were normal and they prescribed me blood pressure meds and paxil. Advised following up in a month and go from there. Said als was the worst case scenario but didn't elude to anything else it could be.

Neither cared to access the pain im experiencing in my shoulder and this is worrying me even tho he said it could begin there. If I had true weakness im assuming I would not be able to lift my arm or do much of anything. But again now the phrase "possible start of als" has taken over. I cant tell if what I'm feeling in my arm is me over exerting my muscles or something else. I'm a train wreck.

 

[KimT]

I really can't believe some doctor would look at your symptoms and even entertain the thought that it could be the start of ALS.
That's just plain ridiculous.
Get another doctor.

 

[MRB1977]

Kim

Why do you say that?

 

[affected]

Sadly I think what happens is that people come in to a doctor and say I think I have ALS. The doctor tries to alleviate their fears but says something like I can't rule it out, it is a very slight possibility or something else vague. What they mean is - I don't believe it is at all. Without fully ruling it out or finding an absolute diagnosis, they don't want to be open to litigation so they say something vague.

Someone with high anxiety only hears that one little phrase they were so paranoid about hearing, and off they go again feeling they are going to die. MRB you have extreme anxiety, you know it and it is glaringly obvious to us and to your doctors.

Then it doesn't matter what they are told by anyone else. Health anxiety is a real illness, and needs to be fully addressed.

Interestingly nearly everyone actually diagnosed with ALS have a reasonably low anxiety level and are stunned at the diagnosis and immediately look for a second opinion hoping to prove it wrong.

Those with extreme anxiety constantly try to talk everyone into believing their own fears, including doctors.