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lawmom1

New member
Joined
Feb 15, 2009
Messages
8
Reason
Learn about ALS
Country
US
State
Oklahoma
City
Norman
This is my first post on any type of forum. I am impressed and humbled by everyone's willingness to discuss such a sensitive, personal topic and I don't want to diminish the seriousness with a frivilous post. But, like many posters on this site, I am feeling afraid and alone. Maybe someone has been in my shoes or maybe I just need someplace to actual put all this down. Here goes: I am almost 44 years old, female. Just recently, I realized that I have sleep apnea (my husband noticed it) and that my heart "skips" a lot of beats. I made an appointment with my GP. In the few days before that appointment, I experienced numbness, weakness in in my right hand - mostly in the ring finger and pinky. I type at work a lot so wrote it off as carpal tunnel or something similar. It seemed to mostly resolve but is tingly most of the time. The very next day, my calves - both of them - began to ache like "growing pains" I had as a child. I also began to experience twitches randomly in my legs and arms. When I saw my GO, he seemed to think it could all be explained by the apnea - I guess the oxygen starvation of the muscle? - and set me up for sleep study which has not been scheduled yet. They will also check for RLS, although I have never had those type of symptoms and now, in fact, my legs feel better and I twitch less when I am laying down. Anyway, the aching continues, though I don't notice weakness in my legs. Today I also started to have twitching in my right hand (thumb, pinky, pointer), weakness in my right bicep and noticeable twitches in the arches of both feet. It seems like everything is snowballing by the minute. I asked my doctor for a neuro referral and have an appointment in two weeks. I am not usually an alarmist and I don't run and look up every symptom on the internet but this is an extreme situation for me and I am truly afraid of having ALS. Any words of wisdom while I wait for neuro? Thanks for listening....
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Hi,
My husband has CIDP and sleep apnea. The apnea can cause multitudinous symptoms so it is good you are going to have a sleep study done. My husband uses a CPAP machine. Important to follow up and use a machine if you are diagnosed with sleep apnea as cardiac problems can ensue without CPAP treatment. Many of your symptoms have a sensory component i.e. numbness and tingling which points away from ALS. Indeed it could be carpal tunnel or a more remote possibility CIDP(only 8 people in 100,000 diagnosed with CIDP). The neuro. will likely do an EMG and nerve conduction tests, lumbar puncture, blood tests, possibly MRI, chest xray etc. We were scared too when hubby started with lost of strength in his right hand, atrophy, twitching, and foot drop. But we are blessed in having him diagnosed with CIDP versus ALS. He receives monthly IVIG treatments for the past year and a half. Statistically it is more likely for you to have sleep apnea, restless leg syndrome, or benign fasciculation syndrome versus ALS or CIDP. Absolutely you are better off not to do much internet searching and just wait for the neuro. appt. I nearly drove myself crazy doing that--so I recommend backing away from the computer until you are seen. Don't even come back here until after your appointment, and then you can report back to us that your fears were not realized. Best wishes to you.
Laurel
 

ptich

Distinguished member
Joined
Jan 12, 2007
Messages
171
Country
US
State
California
City
Mountain View
lawmom1, I think it is very typical for any neuro-muscular condition to have this avalanch of symptoms the very moment you start thinking and worrying about it. Try to think less about, drinking more water may help with twitches (it helped me), and let doctors do their work.
 

lawmom1

New member
Joined
Feb 15, 2009
Messages
8
Reason
Learn about ALS
Country
US
State
Oklahoma
City
Norman
Of course, you are both right. I need to focus on other things and wait for help fromthe experts. Laurel, I am sorry that your husband has to go through CIDP. My father was diagnosed about 30 years ago with a demylenating disorder of unknow origin (another reason I was afraid of a neuro problem) but he has, thankfully, had very few problems with it over the years - just a little numbness in his hands. ptich - thanks for the advice about the water. What was the cause of your twitching?
 
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