Things that you do not hear about ALS

[tripete]

It is true that know one can understand what it is that those of us with this illness go through. At the same time we can not understand what this illness puts those who love us and care for us go through. I feel horrible for what my wife has to go through on account of my illness.

 

[Lkaibel]

Well if it helps any Pete I can say I would not trade a moment with Brian. Lou Gehrig’s wife said “ I would not trade my ten years with him for 30 with another man”. I could not agree more.

I hope my husband feels glad always for the life be we have shared, and that it outweighs the worry he has for me. I am just going to guess your wife feels likewise.

 

[KimT]

I've had to listen to all kinds of crap from friends, relatives and doctors.

During my limbo phase one of the ALS doctors said it was somewhere between possible and probable. I told him I needed to make a decision regarding my retirement because if I took a monthly check, it would start out at about $5,000 a month and then a COLA of 3% a year. I told him I had the option of getting a lump sum distribution and he said, "well, you can get into a pretty good nursing home for $5k a month plus SSDI." I was stunned because he was smiling. I just stared him down and his face turned red. I was alone and he knew it. I cried all the way back, a 2-hour drive because I couldn't make a decision without a diagnosis.

 

[Lkaibel]

Kim, my friend who’s husband passed this year was in “ need a diagnosis” mode with him.

At Mayo, while they dragged and dragged and refused to diagnose him even though all signed point to ALS they got downright nasty when said they needed to know if he should retire and they needed to apply for disability. The response was “So it’s all about money with you”? Unbelievable.

 

[notBrad]

I dropped my pcp because when we were at the stage where it was highly likely but we still had hope it was not als I made the comment that I had hope because it was a rare disease this idiots reply was "well its not rare if you have it" and laughed at his own joke.

 

[worrieddaughter77]

yeah, my dad dropped his neuro because he said he believes it is 95% not ALS and 95% not myasthenia gravis. And then he went on and on about how it was most likely just in my dad's head and he needed to see a psychiatrist...

About things they don't tell you about ALS. my dad's weak hand and leg got very very swollen... it happened probably a week ago and i still didn't ask the dr about it because we were dealing with my dad's more pressing coughing issue. swelling is something i never heard of with ALS before. Is it normal? are there remedies for it?

 

[Now stay at home dad]

This happened to my left foot Recently. I used compression socks and the swelling went down the next day. The socks went all the way up to my knees ( I would not leave them on for more than eight hours at a time). Hope that helps.

 

[KarenNWendyn]

Pete, thanks for the informative thread.

Worried daughter, it’s possible that the swelling in your dad’s weak limbs may be due to lymphedema. One of the functions of skeletal muscle is to squeeze fluids from the tissues back into the blood vessels. When the muscles don’t work properly, the fluid leaks into the tissues and can’t be pushed back. Sometimes massage or compression stockings can help. There are lymphedema specialists who know how to do this type of massage properly.

 

[affected]

Thank you Pete.

And thank you to the PALS sharing so much in this thread.

I still can't imagine, not truly, what my Chris went through. Only someone who has had this happening to their own body can. One of the things that drew me here and has kept me here is the possibility of having friendships with PALS as well as CALS.

The information out there on ALS is so sadly lacking and behind it's frightening because it only widens the gulf between what we all go through and what anyone can even try to understand, let alone prepare for.

Love this family here, your honesty is a life-saver.

 

[Richbanks]

Nice thread... Thanks for sharing...

 

[tripete]

About things they don't tell you about ALS. my dad's weak hand and leg got very very swollen... it happened probably a week ago and i still didn't ask the dr about it because we were dealing with my dad's more pressing coughing issue. swelling is something i never heard of with ALS before. Is it normal? are there remedies for it?

Swelling is another issue. I noticed it when I first started using a wheelchair. My feet would get HUGE and purple. I suppose if I stopped moving my arm the same would happen to my hand. The more muscle wasting that has happened in my legs and feet the less swelling I get, although my feet still get purple and freezing cold. The Hospice agency that is "caring" for me offers a in home massage therapist. She comes once a week and has helped with increasing my shoulder range of motion and decreased the pain. She also gets my feet back to their normal color and warm again. It is a nice service.

 

[Jocalyn8]

What a great thread!
Ok my friends, How about all the mouth problems?
Jaw clenching, chattering teeth, biting toungue/ cheek daily? And oh the nightmare dental visits?
If I go out at night and it is cold, my jaw clenches so hard it is painful!
No one told me about that..........

 

[tripete]

What a great thread!
Ok my friends, How about all the mouth problems?
Jaw clenching, chattering teeth, biting toungue/ cheek daily? And oh the nightmare dental visits?
If I go out at night and it is cold, my jaw clenches so hard it is painful!
No one told me about that..........

I can lo longer go to the dentist. My gag reflex (upper motor neuron) is so pronounced that anything touching my mouth activates it. I cant even brush without nasty gagging, which causes my throat muscles to "lock" and cramp. YEAH!

 

[mpnatx]

Pain? Yes! Severe cramping (in places I never imagined would cramp). Aches and pain from compensation also. Certain smells make me nauseous and brushing my teeth also makes me gag.
What a pain in the **s!

 

[KimT]

I've been told over and over some of my issues are co-morbidity. My sensory symptoms started at the same time as the fasciculations (very localized). Since then my left leg, especially, tingles non-stop. It feels like sciatica only without the severe pain. When I touch the nerve on the back of my thigh, there is a shock and feeling all the way down my leg. I think it's because my muscles are wasting and there is not enough muscle/fat to protect the nerve property. Maybe I'm wrong.

The bottoms of my feet hurt so badly when I first get out of bed. I can still walk but my feet are skinny and my toes are curling. I wear running sneakers during the day and the padding helps but they do a number on my toes. If I put sketchers and socks on my toes feel better but the padding isn't enough. A few days ago I tried walking around the condo on bare feet. It felt good for about an hour then both legs started aching.

The reason the doctor(s) mentioned co-morbidity is because I was diagnosed years ago with fibromyalgia (Mayo Clinic). I never believed I had it because my energy level was so high and pain was my only symptom. Then one doctor said I should consult some other specialties because of the number of autoimmune diseases in my family. He said I still have ALS but could have something else along with it.

In 2007 I had what I thought was a migraine aura but it didn't go away and no headache followed. Turns out it was a loss of blood supply to my retina. I went to a specialist and he said it could only be two things; infectious disease or autoimmune. They did an angio on my eye and it went away on its own. He tested for infectious diseases but didn't test for autoimmune. Mayo and Shands did a lot of testing for autoimmune. I already have Hashimoto's and both MS and RA runs in my family.

The reason I bring this eye thing up is that they have found a correlation to eye issues and ALS or, better phrased, people with ALS can get eye issues.

I thought about trying a round of steroids to see if anything improves but when I was in a car accident oral steroids sent me into a manic episode. I tolerated the shot in my neck and shoulder but didn't do well with the oral ones.

Prior to ALS I didn't have a gag reflex (can't wait to hear the comments on this one.) Now I have one but it is very slight. I also don't have a reflex in my left ankle, where this all started but very brisk reflexes everywhere else.

This post reads like it's coming from a crazy person.