Update..support/advice.

[Debd4l]

Hi,

I have posted here before, 41 yr old f. It has been 13 months since I first started having symptoms. Just to give some background when I first posted I had been sick with a virus then infection and then had the following occur :

- initial sudden both leg weakness
- then left hand weakness mild
- then both leg weakness/spastic near constant
- muscle twitches all over
- all occurred over 2 week period

After about 4 months of that I got into a neuro. He said my clinical looked good but wanted to do an EMG. He performed the EMG and said it was normal with no signs of MND. He and my GP decided I probably had a post viral CFS/Fibromyalgia. I had low Vit D that they could not raise from supplement so been doing gluten free diet and taking Vit D for 9 months. During that time I have improved greatly leg stiffness and weakness gone etc. But my muscle twitching still continued although seemingly less.

Now I have noticed that my hands appear to be aging kind of quickly and my left hand in particular is very wrinkly around the fingers and knuckle area. I also have a new symptom starting this week my throat is clicking when I swallow every time except when drinking or eating..My speech is fine.

My GP moved offices, they have run a bunch of blood tests, MRI and NCV/ EMG all normal. Not sure if I should go back to my neuro or maybe to an ENT? Sorry to post again I was hoping to just get better and move on but the throat clicking on swallow is concerning. Thank you..

 

[affected]

Gosh, my hands looked like a 70 yr old hands by the time I was 30, I just kind of got used to them ...

I'm not sure what you want from us. 13 months and no progression, in fact some improvement, why would you be on an ALS forum? ALS NEVER GETS BETTER.

Stay with working with your doctors, they can do the best by following all tests that they feel are necessary.

If you think your throat clicking is ALS, don't worry it's not.

All the best, stay calm and work with doctors and remember to LIVE.

 

[Debd4l]

Thanks for your reply Tillie. I originally came to this forum because of my weakness and fasics. My weakness did improve but it took many months of physical therapy etc to do so. I believed my doctors diagnosis as I do seem to fit the cvs/fibro bucket. Except the way my hands look is a little concerning. I told my Mom my hands were bothering me sometimes the left does feel to have less strength and she was the one who said the lines and dents on my fingers was prominent. That worried me as she knows nothing of MND symptoms. Also, now that my throat is having some issues also concerned. Because my legs had made improvement I had really removed the idea that this could be something like ALS etc. I know it does not improve. I am so thankful I have been able to improve in that area. When they did my EMG they only did my right leg and not my upper body at all. My mother in law is a doctor and she said they should have done my arms also.

I was so happy to get a clean EMG that I ran out of my neuros office. I guess I was looking for some advice because I am wondering if it would be worth it to get another one that included my hand etc. Anyway, thanks for your reply. I appreciate you taking the time to do so..

 

[FSHolbrook]

I would count my lucky stars that every test indicated normal. ALS is probably the worst of all the neuro-muscular diseases. I sure wish my neurologist had found my tests normal.

Rick

 

[Debd4l]

Hi Rick,

I did count my lucky stars for sure..I have a 5 yr old son with mild special needs and I was so concerned about my tests coming out okay so I could be here for him..I am so sorry your tests were not normal. My tests were done almost a year ago, my GP and Neuro were the ones who suggested either MS or MND based off of the initial symptoms I had.. and I guess I am just worried about having a new symptom. I should just get it checked by an ENT and not assume the throat issue is related to the MND testing/symptoms I had done last year. Thank you for commenting on my thread. My thoughts are with all of you on this forum.

 

[Kosmoskatten]

I do not understand why your Neuro suggested MND if your clinical exam and EMG/MRI was good. And if your symptoms are getting steadily better, then I think your should stop worrying about having ALS.

 

[Debd4l]

He suggested MND before my EMG. Because I had and have muscle twitching and also weakness (which as I noted has improved). When he finished my EMG he said normal, no evidence of MND. That was all. He asked if I had any questions and I said well what do you think this is then? He said I think you have post-viral cvs/me. I went back to my GP and Rheum after that and told them his conclusion and at that time they were focused on my Vit D deficiency. So I went gluten free and took Vit D and saw some improvement in my leg weakness. Still having fasics. The only reason why I am still concerned is because they mentioned MND and because I now seem to have some clicking each time I swallow etc. I just need to go back to the doctor. Thanks for commenting..

 

[Barbie]

For Pete's sake--After the EMG he said no MND--what more do you want? why are you focusing on something he said before he tested for it?

Clicking when swallowing is NOT a symptom of ALS. you have been getting getter--why don't you focus on the good things you are doing and the improvements?

 

[Debd4l]

thanks for replying, I worry about it because I have twitching in my lips and in my neck muscles also. So I guess having this new throat clicking symptom is just concerning to me. Believe me I am so grateful for making improvements, last year I was having so much trouble walking when I look back at my sons preschool grad video I can see how much difference there was in my gait. I have only been to my one neuro appt. Never went back. I have been focusing on what is working for me, I have had some other odd symptoms also, like droopy eyelid that comes and goes etc..Anyway, unlike some of the posters in this section that worry about their twitching I started with weakness and since my doctors did initially test me for MND it is just one of those things that I think of when something new comes up. I am glad you all think the throat clicking is not typical for MND. When I go to my GP I will see what he thinks and maybe go to the ENT vs back to the neuro. Thank you..

 

[Nikki J]

Hi Deb
Mention the eye droop issue to your GP. Maybe nothing but he/she might want to check for some things. It can be part of myasthenia for example which is definitely tre atable

 

[Debd4l]

Hi Nikki,

Thank you, I will mention the eye droopiness. It is intermittent so I had not mentioned it but it has happened again now and I notice I am having to kind of look up with my glasses with it sometimes to read. I have an appt on Tuesday so will talk to the doctor about that and throat clicking. Have a good afternoon..

 

[Clearwater AL]

("I have a 5 yr old son with mild special needs and I was so concerned about my tests coming out okay so I could be here for him.") That's probably the driver of your issues. Absolutely normal. Consider counseling in accepting your son's special needs. All of us want our children to be normal (perfect) and it's so hard to accept when they are not. You will be there for him.

 

[Debd4l]

Thank you Al for your thoughtful reply.

("I have a 5 yr old son with mild special needs and I was so concerned about my tests coming out okay so I could be here for him.") That's probably the driver of your issues. Absolutely normal. Consider counseling in accepting your son's special needs. All of us want our children to be normal (perfect) and it's so hard to accept when they are not. You will be there for him.