Any insight appreciated....

[mpnatx]

Re: Symptoms: wax & wane?

Thanks, Max!

We have a Max, too. Great name, for a great guy. Thanks for the positive thoughts! :smile:

My grandsons is Max also!

 

[cheerleader]

Re: Symptoms: wax & wane?

Dear mk- If there is any possibility of ALS, please have your husband refrain from things like the chainsaw! The month before my hubby was diagnosed, he was operating one, lost control and took a chunk out of his leg and nicked the bone! Not safe to be operating machinery like that if hands are weakened at all. Reading your story was a déjà vue moment for me!

 

[DreamsEnd]

Re: Symptoms: wax & wane?

Dear MK,
I'm no medical professional but I'm with you on the no muscle wasting between thumb and pointer finger is suspicious. That was one of the first indicators in my PALS hand weakness. I'm hoping this is not ALS. It's unusual too that his symptoms seem to be bilateral rather than one sided. I hope your appointment at Mayo is with their ALS neurologist specialist and not just a regular neruo?
Agreed about any extreme exercise and power tools for now.
Wishing you the best birthday ever.

Sherry

 

[MaxEidswick]

Re: Symptoms: wax & wane?

>We have a Max, too. Great name, for a great guy.

 

[mkboreson]

Re: Symptoms: wax & wane?

He's completely find tonight? His grip is very, very strong, his speech is fine and his balance is perfect. He has been walking on his tip toes and heels periodically for a while. What is going on? He had a very stress free day working outside with his dad. He also got a ton of good sleep last night. Can these little factors make such a difference? TIA

Kelli

 

[gooseberry]

Kelli, My son is 12. Regardless of what your husband has, I would try to line up some long term help and a support system. This has been invaluable for us. It doesn't need to be family it can be members of your church, daycare friends,.etc. Accept all.help. I would make a.list of things to be done now that the weather is changing you may need help with lawn work, or groceries, babysitting, errands, etc. Steph

 

[mkboreson]

Hyperekplexia

Anyone have this with you ALS symptoms? My husband has a crazy startle reflex. We are going to bring this up to his doc on May 21.

 

[Gembead]

Re: Hyperekplexia

Yes my hubby has it as well, phone rings, dog barks, someone sneezes,all give him a fright .
Another part of MND.
Love Gem

 

[mkboreson]

Re: Hyperekplexia

Thanks for the reply, Gem. I was hoping this wasn't a symptom of MND, darn it.

 

[mkboreson]

I'm so sorry!

I am so sorry to continue to "symptom spot," but I just can't stop. I'm obsessing over this diagnosis and it's causing me to lose weight and sleep. My husband, the diagnosed one, on the other hand is calm and patiently waiting our trip to Mayo in June. He is 100% adamant the diagnosis is incorrect. I just need some reassurance that there is a glimmer of hope that he may not have ALS. A few things we have noticed, as I don't want to post the whole story on here again. My first post is titled "Any Insight Appreciated." Some things that we are noticing:

- His hand weakness comes and goes, to a pretty varying degree. One day he won't be able do something and the next day he can.
- He has had hand weakness for almost two years and has no visible atrophy.
- He only notices his leg weakness when he gets emotionally charged, mainly upset. His quads are the only thing that feel week to him in his legs. No foot drop issues to speak of.
- When I ask him to show me resistance in his fingers by spreading them apart, his main weakness is in his pointer finger and middle finger. The outside fingers are pretty strong.
- His grip strength varies by the day.
- He has noticed "pin and needles" in his back in a consistent spot below his right shoulder blade.
- His fasciculations come and go. Some times they are present in his legs and sometimes they aren't.
- At the neuro appointment, he couldn't walk on his heels or stand on his toes without something to hold on to. He can do both in our living room, even walk on his heels across the room. (The night before the appointment our 2 year old was up puking all night and we left the house at 6:00 am to get to Denver in enough time) How much, if at all, does stress factor into ALS?

Again, I thank you all for being patient with me, as I sit here at work and google things. I can't stop and I know I'm not helping him. If this isn't appropriate to post here or I am driving you all crazy, please close the thread. Thanks......

 

[Vincent]

Re: I'm so sorry!

Almost everything you describe waxes and wanes. With ALS things just get worse, never better. There seem to be anxiety issues that may need to be addressed. As the sticky says: if we tell you that it doesn't sound like ALS and you still need to hang around here, this should tell you something.
Vincent

 

[Nikki J]

Re: I'm so sorry!

Generally pins and needles being sensory is a sign of something else Also ALS generally does not get better. That said he was apparently diagnosed by a well respected neuromuscular doctor. When you get his records you may learn some things that will explain it. If it is ALS and he is so little progressed after 2 years it is a good sign. I know a man who is 20 plus years and not vented. He never did anything special for meds or supplements.
I do get symptomatically worse if I am tired or ill and the difference is pretty dramatic.
I know you are having a hard time. It is ok to post but it really would help if you just post on one thread. Please? Thanks

 

[hjlindley]

Nikki is right. She usually is. I'm weaker when tired. I only fall when I'm tired and luckily that's only about once every six months. I've been on this journey for eight years and it started with weakness in my dominant hand. I had a probable diagnosis in 2009 and a definitive diagnosis in 2011 and I'm still eating, breathing, and speaking. Anxiety is a real killer. And please stop using Dr. Google, he's usually wrong. Good luck and I'm glad you've got an appointment with a well-established clinic. Good luck, and try not to worry.
Hollister

 

[DreamsEnd]

Kelli,
I understand! Your husband's symptoms are very unusual. Where else can you go and talk with people who have the same DX? Even respected neurologists can make mistakes but what's important until you get to Mayo is to try to take it one day at a time. Whatever his final DX is, you'll need to learn to do that. That's easy for me to say because in the first few months of my husband's DX I had difficulty sleeping and would often be up at 2:00 AM searching the Internet for more information! That's how I found this forum.
Take hope from the wonderful folks on here who have had this disease for many years - anything is possible.
Hang in there, Kelli.
Hugs,
Sherry

 

[Green Queen]

Oh Kelli you are understandably frantic! Having a name for something can make a things 'better'...my kids aren't quite as young as yours. 13 and 11 (in 41 days...he's counting) it was for them I wanted a name for it, in the beginning any name would have done...
You are in my prayers as you count down the days till the appointment. I truly hope you get an answer. I equally hope it's not this answer.
God bless, Janelle x