Status
Not open for further replies.

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Mom has ALS, but she is not officially diagnosed but I am sure that will happen this week. She has lost her left arm almost a year ago then her right arm, she could drive in May now, her voice is starting to become a problem and so is getting enought air. Her legs are getting really weak. Up to 2 months ago there was some hope it was sever spinal stenocis, lateral nerve impingement, a herniated disk, bones spures, Yada yada yada.
So Now I have developed symptoms a month ago that include tightness in throat, my touge feels like it is swollen, and it is weird to swallow. No slurred speech, yet. No excessive saliva, no twitching, and both of my arms tingle at night from the elbow down, not really my fingers. My hands do not feel weak but the cold bother the joints. I go for a barium swallow on friday, if I make it, I am so freaked out.

Is this the stress of my mom, or do I the mother of 4 children 7 and under, go in to that voyage that so many of you bravely travel?
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
I wanted to add

I am 45 years old and Mom is 72. If it is hereditary shold I not get it around her age?
Thank you for reeading this.
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Hi Northerngirl, and welcome to the forum. I am sorry your mom is having such a difficult time. My husband was DX 8/07. This is a great place for info, support, understanding and venting. I am no expert on ALS (unlike alot of the members here) but it does not sound like you have ALS to me. Also, familial ALS is the rarest of all. If I may ask, why are you having a barium series done? Hang in there, and try not to worry, as stress can create alot of symptoms. Wishing you the best.

Linda
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Thanks linda for the reply,
I have a problem swallowing, I feel like stuff getts stuck behind my thyroid sometimes, then an inch below my chin, but mostly my tongue feels swollen and my neck feels swollen. The doc said to try and rule out things one step at a time, She ask if I wanted to go to an ALS clinic, I said I was not ready for It (It is 400 miles away), I would do this
Then get the emgs on my arms. My middle finger on my right hand has been going numb on the end, No odvious weakness, I am a wreck. The Doc gave some Clonazepam (Valuim?) it was that or anti depressants.
 

AHands

Distinguished member
Joined
Dec 10, 2007
Messages
206
Reason
PALS
Country
US
State
NC
City
Carrboro
tightness in throat, my touge feels like it is swollen, and it is weird to swallow.

those sort of symptoms can definately be caused by stress or anxiety if the Clonazepam does not fix it, I'd definately try the anti-depressants.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi northern girl, I am on both clonazepam and anit depressents!I take the clonazepam because i have essential tremor and it is sometimes so hard to function without them,writing typing anything like that....my doc. told me the only problem with the clonazepam is that it is a depressent so in my case will work for the tremors......You might want to start the antidepressents as the other may calm you for a while but even make you feel more depressed and im sure you dont need that!p.s. i used to live in chilliwack b.c. i so miss those mountains and would love to go back some day....prayers for your mom and you.....Gina
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Thanks for listening!

Thank you so much for listening, I had my cortizole leave tested to see what my adrenals are doing. I want to go on rhodiola, I heard great things about it with out the use of perscription drugs. Mind you I did take a happy pill last night and am having a better day. It's been 6 weeks of this throat tounge swallowing thing and the numb, tingling aching arms. Hopefully the barium swallow will tell me what is not working right. Mom's is having a great day today that nice. She has been quite worried about me and well even worse about that. she wants me to go for greif counciling. She probable is right. Old nurses, man, they are the best. I love my Mom. She always cries when I wrap her arms around me so she can give me a hug, I still do it. You know why because we are always laughing about something else five minutes later and I miss her hugs. I am so proud of her ability to say, you know, today is a good day, or I had a good sleep I am fine right now. Sure she has those moments she crys for no reason, but you can't say that about pals, they has lots of frustrations. Whuuu, that was good to get of my chest even if no one reads it! LOL! Hey I hope ever one on line has a good day tomorrow, that is my wish to you!
Love Laurie:-D
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hey laurie ! I read your post and i am so glad i did! t made me smile and it also brought tears to my eyes!I also hope and pray that tom. will bring a good day for all of us !God Bless you and your lovely mom.....Gina
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Good Morning Gina!
I went for a stess test and a barium swallow yesterday, I am still waiting for my emg test I imagine that will be a month from now so sit and wait. My tonge still has that thawing dentist tingle and the swallow is wierd but, today I am fine. My kids are home today and i think we should go skating with the kids. My mom went to the coast to stay with my brothers for a few weeks. May aunt is helping dad. It is her last trip I am sure. It gives me a few days to destress. The cardioligest told me she was happy with my heart wants a few more tests. She told me to get a dog and walk 30 minutes a day with it. Hmmmmm, a full time job, tripples that are 7, a five year old son, several businesses, a husband, a ALS mother, a motherin-law who had failing heart (87 smoke a pack aday) can't breath, on nitro, has heath workers checking her 4 times aday.We are the only family here half a mile away and I need a dog. I was thinking I need alcohal. Lots. Just kidding But I do take one of my happy pills at night and have been sleeping great. Hubby think I am going to turn in to an addict :). BLaa Blaa Blaa. How is your day! Hope it stared of great.
Love Laure
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
LOL, Laurie. If you don't mind, I will join you in having that drink! Cindy
 

mamaoftwo

Distinguished member
Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
Laurie - just to let you know that originally my doc told me that your thyroid being out of whack can cause all sorts of weird symptoms just like you desrcribe, even the feeling that your tongue is too big or swollen.
 

C.F.

Member
Joined
Dec 16, 2007
Messages
13
Reason
Friend was DX
Diagnosis
01/1992
Country
US
State
Me.
City
Corinth
humor

You "guys" are great! A sense of humor is sooooo important and wonderful.
My Jimmy cannot use his arms, is in a chair, losing his voice, and yet, he smiles the most beautiful smile and his sense of humor is still strong. How I admire that!
Of course he has his terrible feelings of sadness and being trapped, and the suffering is horrible. He has anxiety in the night, wondering if he will wake up. It is heartwrenching, this disease.
I'm thankful to have this place to go and talk and listen and learn.
I wish we could all have group hugs! Crystal
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I wish we could all have group hugs!

I agree. You meet a pretty nice bunch of folks around here.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Crystal, may God bless you, and your husband.

Irma
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
Hello folks! Thanks for reading this.

:-D
I had another great day to day! One of my mom's dear friends and a neat lady phoned to check up on mom, we laughed, and cried then laughed and cried and were soooo close to solving world problems. The tears were good. Mom said I am grieving already and that is what is also causing my symptoms. She said I need to cry and get it out. Let me let you about mom, she always knows best about that kind of stuff. I would say she is a healer (ex nurse) and she has these amazing women that are her friends. Mom’s 72 and in October they had probable the last of their yearly pyjama party, The 5 of them would get together and what? Empower each other? (Can you tell I admire my mom?)
So I had my barium swallow results back everything was normal, too bad I was hoping for a cist in my thyroid or something. My tongue is still weird. I still have not had my emgs for my arms but my theory on that is tendonitis from pushing mom for 2 weeks in a wheel chair through ever mall in Florida, I think the numbness and tingling at night is a little less. I also had a stress test Friday too. My cardiologist told me in her strong Polish accent I need to buy a dog and take it for a 30 minute walk everyday. (Yes I asked her to repeat that one!) She said for someone who does not exercise regularly she was not worried about me. She would do a few more test but if my heart goes in to fibulation? Again go strait to the hospital for an EKG. I thought that one was good advice.
Soooo now that the doc says my heart will take it I would take on my Christmas present from my husband. Do any of you gals have one like this, for my I love you Christmas present he bought me 6 pounds (yes the Costco size) of truffles and then this really cool high tech elliptical trainer.( It takes you pulse and everything.) But is that not a little twisted? Any way I have started to use it as a promise to my dear cousin and support system to release endorphins ever day. She told me her ex was going through some depression a month or 2 ago and his doc told him to walk for 30 min, ever day if he was not better in 4 weeks to come back for some antidepressants. And he is doing much better. There is lots of hope for me this week. I hope you all :-D:-D:-Dhave a special day tomorrow.
 
Status
Not open for further replies.
Top