Diagnosed 7/2021

[SDG-PAX]

Hi. I’m new here, so, please forgive my ignorance. I have been diagnosed with MND and am currently going though genetic testing to try to hone the diagnosis. I have both UMN and LMN signs. I think I’m still in denial. So, I have a strange question. At this point, is it normal to I have good days and bad days? Some days I’m more weak and fatigued than others and just don’t want to move. Other days, I have a little more energy and am able able to accomplish a little more during the day. With my current denial, I keep thinking that maybe this is not real and that I’m really not sick. I don’t mean to sound crazy! But in the last year, my life has changed so much with this. Thank you and God bless you.

 

[affected]

sorry to welcome you.
We strongly recommend a second opinion, by a neuromuscular specialist. Genetic testing may or may not show more something helpful.
Denial is a really normal defence mechanism, and many of us have that at first, go easy on yourself.
Yes we found some days are better than others. Definitely doing a bit too much one day can leave you really wiped out for several days after. Learning to pace yourself will be important in lots of ways.
You will find lots of support here.

 

[SDG-PAX]

Thank you so much. This is my second opinion now. I love my current neuromuscular doctor. He is amazing. Thanks for the information. I’m trying to go easy, I’m just in such a brain fog. The genetic testing is looking for a disease called Kennedy’s disease that seems to fit family history. It is primarily a LMN issues but I’m showing upper as well. My doctor wants to be very thorough before we come to a final diagnosis. I really appreciate him. I appreciate you as well.

 

[Nikki J]

That is great your doctor is being thorough on your rule outs. Should it be confirmed ALS you should also be tested for FALS mutations if you have not already done so.

agree with what Tillie said about doing too much impacting the days following. even now when there are many things I can’t do no matter how rested I am there is a definite difference between rested me and exhausted me

 

[SDG-PAX]

Thanks so much for sharing. I’ve been noticing a difference when I tend to over do it in a certain day. I usually don’t sleep as well that night either. I’ll have to check on the FALS mutation. I really appreciate it!

 

[affected]

Checking for Kennedy's makes sense as a rule out, thanks for clarifying. My Chris was the same in the early days - feel ok (comparatively) one day and just go for all he could manage. Then pay dearly for days after.

 

[SDG-PAX]

I’m so sorry to hear that. It makes me feel like I’m crazy. It’s all so confusing. I’m learning how to slow down and listen to my body. It’s harder than I thought.