Hi there .. This is my first post.

[Mama Cheryl]

I would also want to make sure you have been screened for connective tissue disorders, such as Marfan syndrome and Ehlers-Danlos, which have features that coincide with what you mentioned.first



Yesterday I did look up Ehlers Danlos. I do have elastic skin and I bruise easily. The first Ortho i saw for my shoulder said not to fix it becasue IT WOULD JUST STRETCH OUT AGAIN! HMMMMMM!

I will write down the Marfan as well. Thank you.

The first thing I Googled of course was ALS and Thenar Atropy . Everything I could find agreed with that Hand doctor. Thats another reason I am so scared. Things change , or so it seems, so quickly with ALS . I didnt have the Atropy or whatever this dent in my hand(s) is and now I do..

Thank you....for your suggestions and support.

 

[Mama Cheryl]

Hello I apologize for the length but I didnt want to miss something.. I still might.

Visit did not go as hoped..

First of all I do not know if I am on the right page/thread as something happened to this very old computer last night and i lost some things. So I apologize in advance.

Yesterday i had my follow up with my PCP. At first things were going well. I had her check everything i could think of. Muscle strenght, in arms and legs.. (walking ,curling toes , walking on tippy toes and heels ) i think that was it for that) i dont want to leave out anything. She did as many test on both hands as she could. I showed her the atropy in my hands (plural).

side note: I called the hand Dr. before i saw her to ask him to going over everything he said and did as I did not want to forget because my mind was gone after that . He told me that the muscle he was concerned about in my shoulder was the deltoid. She looked at it down at my side and then out stretched to the sides. She said the muscle itself was fine but the part on top of the shoulder between the muscle and the bone,(sorry i dont know how to describe it) is where she believes he was talking as it hs wrinkles, both shoulders do, maybe because i lost ten pounds in a week. I didnt notice it when I was in his office and my mind had checked out at that point.

So now the reflexes. This is where i lost my hope again. All of them were normal except for my right hand. I shake a lot from stress anyway so i dont think about it much. My right hand tremble all the time. I was nervous, tired, etc (Rationalizing again). When she checked the reflex in that hand, where the thumb is..it woudent stop shaking ...uh oh.. i did of course but she said it meant i was hypereflexis. Which i hear is another sympton. None of the other reflexis did it. She checked and checked. She even checked that one over and over. It only did it 2 times. But that was enough. I tried to rationalize it as well by saying its stress but she said its a different kind of shaking.. is was not violent but still shook. as i said above that hand shakes anyway..

I hope this made since.. Everything was strong... my gait was fine.. but the hand atrophy, the shoulder and now that one reflex. Thank you as always for listening.

 

[codyclan]

So what did your doctor say about these symptoms?

 

[Nikki J]

Just like all the other things you report clonus ( which is what you described) is not specific to ALS. Did your pcp call the neuro for you? You need to see someone who can assess you and perform a proper work up

 

[Mama Cheryl]

Just like all the other things you report clonus ( which is what you described) is not specific to ALS. Did your pcp call the neuro for you? You need to see someone who can assess you and perform a proper work up

She wants me to a different one. One she knows. To rerun the emg and get another opinion. This lady can take me Monday i would pay out of pocket 385. for the consult which is fine but she wants 800.00 for the emg. I am still trying to get into mine as well as one i went to years ago. So clonus could be ALS but there are a coupe other things as well.. Thank you..

 

[Nikki J]

Not a couple of other things. Many. 800 is a lot of money but my friend with insurance paid 1300 last year That was the insurance negotiated discount and she had a deductible. This doctor would be giving you a break

 

[affected]

goodness me, doesn't sound the least bit like ALS - you are really grasping at straws!

 

[Mama Cheryl]

Not a couple of other things. Many. 800 is a lot of money but my friend with insurance paid 1300 last year That was the insurance negotiated discount and she had a deductible. This doctor would be giving you a break

im going to her...next week.. Thank you as always.

 

[Mama Cheryl]

goodness me, doesn't sound the least bit like ALS - you are really grasping at straws!

i am so sorry if i upset you.. it wasnt my intention at all.

 

[Mama Cheryl]

So what did your doctor say about these symptoms?

Shes sending me to another neurologist. I read in a post "Read this before you post" there was a question about having an EMG too early? The answer was no. Due to fiber loss long before the nerves. So if my last EMG was in July it would have picked it up???? Thank you.

 

[Dee Dee 0617]

Cheryl, You have a diagnosis date 1/2020, but you have not received a diagnosis. At least that was my understanding as I read your post. Please understand I'm not meaning to be particularly offensive but wow, I am not a doctor. I am a person dying from ALS. You are not. You certainly have something going on, but thank God girl, it is not ALS.

 

[Bestfriends14]

Cheryl,

I am truly surprised that a doctor, a hand specialist nonetheless, would outright diagnose you with such a rare, awful disease without tests, background information, and symptoms. That would and could, subject them to a lawsuit. From the way I read your posts that are verging on hysteria (sorry to be blunt), you have perhaps cherry picked what the doctor said, creating your own diagnosis, for whatever reason. You will not take what anyone here has said about you not presenting as someone with ALS, which also leads me to believe that this focus on ALS is verging on unhealthy. Please let this go; you do not have ALS and do not present at all as someone who does. As well, please take off your diagnosis date since you have not been diagnosed with ALS. I find you putting that you have been diagnosed incredibly offensive, when you have not been diagnosed as such. Do you go around telling people that you have brain cancer if you have a headache? Probably not, so don't do it with this disease. It is not respectful.

 

[Mama Cheryl]

Cheryl, You have a diagnosis date 1/2020, but you have not received a diagnosis. At least that was my understanding as I read your post. Please understand I'm not meaning to be particularly offensive but wow, I am not a doctor. I am a person dying from ALS. You are not. You certainly have something going on, but thank God girl, it is not ALS.

. I am sorry Dee Dee I did not mean to hurt anyone's feelings or be disrespectful in any way I didn't know what to put in there considering it was a hand specialist who told me straight up to my face that is what he suspected. I thought I clarified all of that during my post I am sorry for any misunderstanding. I should have gone back and taken it out. I was so rattled by What he said. I just wanted to ask some questions about it what he said. Thank you for not being unkind the way the other person was. I pray for a cure all the time. I will leave the forum. Again I am sorry for offending anyone. I didn't realize asking questions about three different symptoms would be offensive.

 

[affected]

Mama, some members are using their eyes to operate their computer, and are under huge fatigue and using machines to breathe.
You can let this go, the thread has gone over two pages. Work with your doctor, we've done all we can to help reassure you.
No need to reply here anymore.

 

[Kristina1]

Cheryl, don't delete your account. I'm sorry some have been really harsh toward you. Tone is very hard to read on the internet and I think that's part of the problem here. You were told by a doctor that you have ALS. That's a diagnosis. Having read your posts I don't think it's the correct diagnosis and I know a hand specialist isn't qualified to make it, but is a diagnosis nonetheless and you have every right to be freaking out about it. You are also in the right place here to ask advice about it. I'm sorry you've been put on the defensive. I don't think you have ALS but I do think you'd benefit from advice here as you figure things out. Hugs.