Status
Not open for further replies.

Kerri

New member
Joined
Oct 29, 2007
Messages
6
Reason
Lost a loved one
Country
US
State
ID
City
Eagle
Hi, this is my first post. I have been visiting and reading your posts this past week. I am finding such good information here and a whole lot of inspiration!

I have not been diagnosed, but have some pretty severe symptoms.
I have lost much strength in my limbs, particularly my left side. I can
no longer put my weight on my left foot. I also can't pick it up far
from the floor. (Most the time my walk is a shuffle). I am falling quite often.

I am not able to carry anything with weight beyond a few ounces with my left hand and arm--a dinner plate is beyond me. (I'm using paper plates now and sometimes I still can't
hold one with my left hand.) I use my right arm and hand to compensate, but they too are weakening. My hands are having a hard time with coordination.

My torso is not able to hold me up in a sitting position, so I have to
recline or lay down.

Breathing has been difficult for quite a long time, but I have thought it was
asthma and chemical sensitivity related to it. Recently after having two episodes where I had to hold my airway open by laying down and holding my neck back, I realized my muscles were struggling hard to expand and get air. The asthma nebulizer did not help. (Scarey feeling!) Every night now when I go to bed, my respiratory muscles hurt and I struggle for breath.

When I talk my voice becomes quiet and hoarse and it is hard to breathe. Sometimes
it is hard to swallow. I often bite my tongue (literally) and slur my words, or stop mid-sentence because my muscles are too tired to finish what I wanted to say.

My muscles twitch daily and often (and have been for a couple years or so), last night the fasiculations in my legs woke me up, they are very strong. I have had them on my left side for a couple years and now my left side is permanently weak. They have recently started on my right side, my torso, and the bottom of my face.

Two years ago I saw a neurologist here in Idaho, who did a partial EMG-
said it looked normal and he couldn't help me.

My Grandfather died of ALS. The last two months the progression of my
symptoms has been so fast and changed from intermittent to permanent (my
left side and breathing in particular.) As I am learning more about ALS
I am feeling very concerned that it maybe what I am experiencing.

I would appreciate any suggestions on how to get to a doctor who
knows something about ALS/MND in a timely manner especially when living in a place like I do--Idaho.

Thank you for any advise or suggestions you may be able to share. Kerri
 

comfortable with ALS

Distinguished member
Joined
Sep 24, 2007
Messages
111
Reason
Other
Diagnosis
n/a
Country
US
State
mi
City
st.clair shores
Hi Kerri

Iam not diagnosed..but some pals on here will help you. I cant imagine what you are going through? Have you been to a nuero latley? I would suggest going to one to find out what is going on. Iam sure some pals will respond shortly
 

shopathonic

Active member
Joined
Oct 8, 2007
Messages
68
Reason
Learn about ALS
Country
US
State
CA
City
Beverly Hills
Kerry--
I'm so sorry to hear about your symptoms. Here is a linkk to a list of MDA/ALS clinics around the country:

http://www.als-mda.org/clinics/alsserv.html

I've been told that there are other clinics not listed on this page. If that's the case, you can call the nearest MDA/ALS office to find out if there is one near you that is not listed. Here's how to find the office nearest you:

http://www.mda.org/locate/

The other possibility is to call the neurology department of the nearest teaching hospital and ask for the name of their top specialist in neuromuscular diseases and try to make an appointment with him/her. Surely you should be able to find a first-rate specialist who can give you an authoritative second opinion on your situation.

Perhaps others out here will have additional/better ideas.

Best,
Jeff
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi, this is my first post. I have been visiting and reading your posts this past week. I am finding such good information here and a whole lot of inspiration!

I have not been diagnosed, but have some pretty severe symptoms.
I have lost much strength in my limbs, particularly my left side. I can
no longer put my weight on my left foot. I also can't pick it up far
from the floor. (Most the time my walk is a shuffle). I am falling quite often.

I am not able to carry anything with weight beyond a few ounces with my left hand and arm--a dinner plate is beyond me. (I'm using paper plates now and sometimes I still can't
hold one with my left hand.) I use my right arm and hand to compensate, but they too are weakening. My hands are having a hard time with coordination.

My torso is not able to hold me up in a sitting position, so I have to
recline or lay down.

Breathing has been difficult for quite a long time, but I have thought it was
asthma and chemical sensitivity related to it. Recently after having two episodes where I had to hold my airway open by laying down and holding my neck back, I realized my muscles were struggling hard to expand and get air. The asthma nebulizer did not help. (Scarey feeling!) Every night now when I go to bed, my respiratory muscles hurt and I struggle for breath.

When I talk my voice becomes quiet and hoarse and it is hard to breathe. Sometimes
it is hard to swallow. I often bite my tongue (literally) and slur my words, or stop mid-sentence because my muscles are too tired to finish what I wanted to say.

My muscles twitch daily and often (and have been for a couple years or so), last night the fasiculations in my legs woke me up, they are very strong. I have had them on my left side for a couple years and now my left side is permanently weak. They have recently started on my right side, my torso, and the bottom of my face.

Two years ago I saw a neurologist here in Idaho, who did a partial EMG-
said it looked normal and he couldn't help me.

My Grandfather died of ALS. The last two months the progression of my
symptoms has been so fast and changed from intermittent to permanent (my
left side and breathing in particular.) As I am learning more about ALS
I am feeling very concerned that it maybe what I am experiencing.

I would appreciate any suggestions on how to get to a doctor who
knows something about ALS/MND in a timely manner especially when living in a place like I do--Idaho.

Thank you for any advise or suggestions you may be able to share. Kerri


Dear Kerri I am so sorry ,but there is something going on. Your grandfather had ALS so it time for you to get checkes .What are you waiting for.There are thing out there to help with your symptoms You need to get intouch with a neuro who can direct you to the ALS clinic You may have to travel I am not familiar with your area. You can call MDA as well But go right away before you run into problems falling or difficulty breathing or even choking. I am not saying you have ALS but you do have something neurological going on that must be addressed. I wish you the best God Speed Pat
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
I agree with Pat, you need to get into MDA neuro specality. You can call your local MDA, or just look up your nearest ALS clinic and get there. What you explain is very concerning to be honest with you. I would not waste any time..

How old are you if you don't mind me asking.


Rgds,
Jamie
 

shopathonic

Active member
Joined
Oct 8, 2007
Messages
68
Reason
Learn about ALS
Country
US
State
CA
City
Beverly Hills
Kerry--
I'm so sorry to hear about your symptoms. Here is a linkk to a list of MDA/ALS clinics around the country:

http://www.als-mda.org/clinics/alsserv.html

I've been told that there are other clinics not listed on this page. If that's the case, you can call the nearest MDA/ALS office to find out if there is one near you that is not listed. Here's how to find the office nearest you:

http://www.mda.org/locate/

The other possibility is to call the neurology department of the nearest teaching hospital and ask for the name of their top specialist in neuromuscular diseases and try to make an appointment with him/her. Surely you should be able to find a first-rate specialist who can give you an authoritative second opinion on your situation.

Perhaps others out here will have additional/better ideas.

Best,
Jeff
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Kerri -

If you can't travel to a expert in ALS/MND, maybe you could urge whatever physician or neurologist you can see to consult with a specialist. There was a woman (single parent) visiting this forum last year from "corn country" who managed to patch together enough resources to make do well enough to keep her kids with her. Informal supports (family, church, neighbors) can make all the difference.

Liz
 

Kerri

New member
Joined
Oct 29, 2007
Messages
6
Reason
Lost a loved one
Country
US
State
ID
City
Eagle
Thank you all much for your responses. Especially for the MDA list and the encouragement to get to a clinic.

It gave me peace of mind to see a clinic (not so far away) listed on it. It is within driving distance--about five hours. Thanks to my husband's persistence, one of my doctors and her staff are working hard to get me in there.

I feel such a sense of relief knowing that the next step is taking place, that we
are doing what we can.

Liz, the single mom you wrote about who is facing ALS alone
with little one's....beyond words! I'm so glad she has been able to keep
her children with her and can only imagine how painful it must be for those
who have to face the possibility (or reality) of not being able to keep their
little ones with them.

Information and affirmation from this forum has helped me feel a boost of courage and I moved the sleep study which I've been putting off and putting off, to tonight. The sleep study feels like what I can do to help myself and my breathing right now. I hope to be able to get on the night-time machine that gives the respiratory muscles a rest. (can't think of the name right now).

Since I didn't include any personal stats. in my first post, (just a whole slew of symptoms) here's a few facts about me. I am forty-five, married for 22 years, and have three children, a son who is 21 and two teenage daughters. Our oldest daughter is 17 and the youngest is about to turn 16. They are my greatest joys. My career was in education (which I loved) but when my children were little I developed a disabling chronic illness and had to stop. These days, I enjoy writing poetry, communicating on the computer and sometimes on the phone when my voice is able. I love to read.

Thank you so much for your quick responses, affirmation, and encouragement to get to a MDA clinic. :-D
Kerri
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
kerri,

just a thought, but maybe Extra Hands can help you get to an ALS specialist or can recommend one as they help PALS in Bosie.

Boise
Joe Harris and Sarah Barsness, Program Managers
[email protected]
Visit the Boise Extra Hands website!
 
Status
Not open for further replies.
Top