Status
Not open for further replies.

Oathkeeper

New member
Joined
May 3, 2014
Messages
4
Reason
CALS
Diagnosis
02/2013
Country
US
State
Florida
City
Jacksonville
Hello to all you great PALS

My mother was diagnosed last February and I am primary caregiver for her. Things have been fairly manageable with steadily progressing symptoms and she's staying positive and strong, however a relatively recent concern has caused me to question familiar or environmental dangers.

I moved back in with my mother to help take care of her a little over a year ago, no major health problems other than obesity for myself. Starting this past February, I have been developing some concerning problems. I experience tingling and numbness in fingers and toes (used to be intense and regular, but has either subsided or I have become accustomed to it by now). My throat has steadily become more hoarse, first noticing I couldn't hit the same higher notes I used to while singing in the car, then an almost constant feeling of phlegm in my throat and needing to clear it, which does little to dispel the hoarseness. I also get dry mouth and weakness of the soft palate when speaking at length (begin to miss hard "k" sounds). I haven't noticed any loss of dexterity in the tongue and do a few tongue exercises each day to check. I also feel like I may have less flexion in my left ankle (paranoid about foot drop). Friends and co-workers all say I appear to be walking normally, so that may just be stress and paranoia. The voice problems, however, are very real and frightening. I have an initial doctor's appointment on the 19th with my primary care physician and plan to just state my symptoms without trying to insinuate a MND.

What has been the biggest concern to me was noticing a musty smell in the home a few months ago. I know black mold can have neurological damaging effects, but never heard of any correlation with ALS or any other MND. Just to be sure, I had the A/C maintenance people come and clean/replace parts in our home unit and the smell has gone, but I fear either some mold persists doing us harm or it was already too late. I realize much of this may be stress or anxiety from dealing with caregiving for my mother, but it's hard to ignore my voice problem (which keeps looking like early stages of bulbar onset). I'm looking forward to going to the doctor and knowing one way or another. I hope you are all doing well, staying positive, and thank you for any support/advice you might have.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
What you are doing for your mother is a Wonderful thing.

>I'm looking forward to going to the doctor and knowing one way or another.

good plan,

best regards,

Max
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
I think your observation on the mold is the culprit. It can be very damaging to you respiratory system. you could also be suffering pain from the physical part of being a caregiver and your weight could make it worse. I know that I have sore elbows and back from the lifting, pulling and pushing that I am always doing.

Perhaps you could get someone to stay with your mom for a weekend, and you could get away and rest in a clean environment. It is also no unheard of for caregivers to get some "sympathy symptoms". Remember that ALS is very rare, and if you were a fals you would probably have several people in your family who had died from ALS in the past.

If it is a mold issue, you should really think about moving out of the house you are in as soon as possible. not good for you or for her.
 

Oathkeeper

New member
Joined
May 3, 2014
Messages
4
Reason
CALS
Diagnosis
02/2013
Country
US
State
Florida
City
Jacksonville
Thanks, Max and Barbie, for your replies.
I saw my GP at Mayo on Monday, explained most of my symptoms (including a couple more than have "sprung up" since my original post) and he didn't seem to be too concerned and wants to see me again in a couple months just in case. He didn't feel the need to send me to a Neuro.

My biggest concern was what appeared to be tongue fasciculations when sticking my tongue out. (It doesn't move much at all when at rest in my mouth) The GP said it was a tremor and not fasciculations and there would be more rippling instead of quivering. My speed impediment (biting my tongue, slurring an occasional word, tripping over or reversing words) seems to happen primarily at work. I work in retail sales and talk very quickly and enthusiastically. I have never had any speech articulation problems at work until last month. On Sunday I was hanging out with friends and my godchildren and had no speech difficulties at all, then back to work Monday and I felt like a blabbering mess. Tongue felt dry and a little numb, especially when saying "th" words. My voice is still limited in range and I get scratchy throat and slight hoarseness when speaking at length. Swallowing appears to be good (I think?) I never choke on anything, but it's hard for me to tell if I have to do two swallows to take down food or not. I have noticed I get a runny nose and have to clear my throat after eating. My fingers/foot tingling is also intermittent and seems to happen most when I'm sitting with hands still or driving.

As for the mold issue, I got a test kit and stuck it up to the AC vent. Low and behold, the petridish grew both white and black mold within 72 hours. I'm calling an inspector/removal specialist this weekend. Most of the research/papers I've read don't mention any link between mold and ALS, but do talk about general neurology problems and, of course, respiratory problems. Either way, it's gotta get taken out because it's bad for us to be breathing that stuff.

As for mom, she's staying positive and fighting hard. She's wheelchair bound for getting around now, but can still stand with me holding her for a short time. Her speech is starting to become incomprehensible, but we have an assistance device on the way from a wonderful friend who works in speech therapy. She does choke on the breakfast of yogurt and blueberries she has sometimes, but otherwise swallowing is ok and we've come up with a great way to position towels when she eats and brushes her teeth to avoid drool and food on her clothes.

Thanks again for any support/advice that can be offered for helping mom and dealing with my own health issues (possibly craziness?)
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
> She does choke on the breakfast of yogurt and blueberries she has sometimes, but otherwise swallowing is ok and we've come up with a great way to position towels when she eats and brushes her teeth to avoid drool and food on her clothes.

try puree -- it works for me and I haven't eaten since Jan. Also, great tip from VA -- get cheap electro-toothbrush $7-$12 at Target. Also good with just dipping in mouthwash!
 

Oathkeeper

New member
Joined
May 3, 2014
Messages
4
Reason
CALS
Diagnosis
02/2013
Country
US
State
Florida
City
Jacksonville
Hey everyone. Thanks for the tip, Max. So I've decided that the only thing that will allow me some peace of mind is to make a neuro appointment. Despite the GP being unconcerned, he did tell me to call if anything got worse, and it already has.

I have only a few more questions to solicit the opinions of those experienced on this forum and then I'll stop posting on this thread.
In regards to throat/voice/speech: Would early slurring occur only when speaking quickly? Putting in extra "umm" and "uhhs" while talking to avoid slurring? Feeling like talking at length dries out/numbs the tip of the tongue and makes certain words require effort to say at regular pace? Always feeling a need to clear the throat?

In regards to limb onset: Feeling weakness in left foot/leg when walking and clearly walking strangely (feels like I'm swinging my left hip out to overcome loss of flexion.
However, I can manually flex and point my foot, walk backwards down stairs on the balls of my feet, stand on my left toes for 30 seconds, jump up stairs on both feet (jumping up stairs on just left only a couple stairs). Could I do these strength exercises and still be experiencing nerve problems from an MND? I was a dancer and am now a dance teacher, so I've always had strong calves/thighs. So the atrophy has it's work cut out for it.

I know I sound crazy, but I know my body and I know when something is wrong.
 

Mediasmart

Distinguished member
Joined
Nov 4, 2013
Messages
392
Reason
PALS
Diagnosis
08/2013
Country
US
State
NY
City
Orient
Have you seen an endrocrinologist....? Some of your stuff can link back to type II diabetes and thyroid issues. Just saying
 

Oathkeeper

New member
Joined
May 3, 2014
Messages
4
Reason
CALS
Diagnosis
02/2013
Country
US
State
Florida
City
Jacksonville
Have you seen an endrocrinologist....? Some of your stuff can link back to type II diabetes and thyroid issues. Just saying

I have not. Like I said, I've only seen my General Practitioner at the Mayo Primary Care and he seemed to want to write everything off to stress and anxiety, telling me that if I had ALS it would probably the first time in history that a mother and son both developed the disease within two years of each other. He also said that since I'm only 30, that lowered the likelihood as well. I'm aware of how ridiculous the odds are, but the irony of me feeling perfectly fine until 3 months ago (almost a year exactly after moving back home to take care of her) is...well it's there. Diabetes and Thyroid were one of the early things that popped up on Web MD and the physical therapist at the dance studio both mentioned. My blood test at the Primary Care clinic came back normal for glucose levels. Would that not rule out Diabetes? I'm really good at putting things that bother me aside and writing them off, in fact our whole family was always good at that. (Mom still wants to get tested for lyme just to be sure her ALS isn't a mis-daignosis over a year later) So it's strange that, even when I put this stuff out of my head, I still feel the strange walking gait, hear the hoarseness, catch myself having to repeat words and phrases to prevent slurring mispronunciation.
My other thought was (pertaining to my walk) maybe a back issue? I have to lift mom up and around several times a day every day, including early in the morning and at night when I get her into bed.
I feel like I want to make 100 different doctor appointments and make my insurance hate me (lol):confused:
-Chris
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,193
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Chris, I'm not a doctor so I won't rule out everything. I do feel confident, based on your symptoms, that you don't have ALS.

Possibly one problem you have is what happens to doctors when they're med students. The more you're exposed to a disease, the more you start noticing the symptoms in yourself. This doesn't mean you have ALS, it just means you're very attuned to every little thing in your own body, and you're afraid of it being ALS. The same thing happens in doctor's offices: when the nightly news highlights a disease, suddenly the doctor's appointments fill up with people who are certain they have that disease. This condition can be said to be "all in your head."

Plus, frankly, being a care giver for ALS is very, very difficult, and can adversely impact your health.

You're wise to follow your doctor's advice.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
>You're wise to follow your doctor's advice.

Amen to that Mike
 
Status
Not open for further replies.
Top