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Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
I am needing someone to talk with. I don't know what is wrong with me or if anything is. I am trying not to diagnose myself or dwell on my symptoms but this is difficult and I must admit adding to my issues. I don't want to wear my family out with my concerns.

This is my current situation. Last January I just started talking funny, even had people ask if I was drinking. I can talk slower and then talk some better but I do talk different than normal. It can get sounding nasally. At times when I eating especially it's like my tongue freezes and locks. It has even cramped like a Charlie horse. This seems worse when I'm fatigued or talking a lot as well if I'm chewing such as at a dinner party.

My throat has changed in appearance that's hard to describe, it seems smaller and the cord on one side has disappeared.

I noticed my tongue having apparent fasticulasions. Now when I noticed the fasticulasions I went to my GP. He referred me to a neurologist.

My mother had ALS, so I was very concerned about these symptoms. The neurologist confirmed the fasticulasions and said he saw enough to do a EMG and MRI. The GP had also down a battery of labs.

The EMG of my arms and legs was negative. The MRI showed scattered t2 hyperintensities and mild degeneration in my neck. I felt complete relief and was positive I would improve with some rest and relaxation as the neurologist suggested.

A follow-up appointment was scheduled. At the follow-up appointment a month later, I had no improvement, i in fact seemed worse. The neurologist seemed surprised and offered to send me to an ALS specialist.

I am forgetting to add the other symptoms I seem to have. My right arm, doesn't work right trying to use the mouse on the computer a certain way I can't do. My hand is stiff and I'm clumsy doing things like opening the mail or packages like zip lock baggies.

Now I'm trying not to stress and dwell on this, but you know that seems harder and harder. I am fatigued easily and have lost some weight. I have muscle spasms in my throat that just about put me over the edge.

Then to make it worse I think back to the last year and remember odd things....like tripping repeatedly, choking a lot, not being able to raise my foot to do something. I worked road construction and needed to lift my foot repeatedly to push pins in the ground, I just couldn't do it.

I'm 57 years old and I lost my mother to ALS. No other known family incidents of I that I know of though. I am either exhibitin syptoms of ALS because of stress and grieving for my mother or I have it.

My neurologist told me that I needed to wait and when I have my next appointment he'd redo the EMG. He said I would either get better or worse. He said if I get worse to come back sooner and see about a referral to Rochester.

I just am going buggy waiting. I think it seems worse but I am truly trying to ignore it but it is a difficult time for me. I remember too much of my mother I think and I realized it was a good two years before she was diagnosed...the problem with that was, she died 60 days later. Some one tell me to relax, you don't have ALS...get a box of chocolate and destress...
 
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ShiftKicker

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Mar 16, 2015
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DX UMND/PLS
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06/2015
Country
CA
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Mod note: edited with breaks for easier read.
 

Nikki J

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7,203
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am sorry about your mom. You know, I am sure, that if there is no other ALS or odd neurological diseases in that bloodline, your risk is almost the same as the general population- very unlikely.

Your symptoms do seem concerning but you are right sometimes PALS' family members do get a PTSD type reaction that makes things hard to figure out.

What is the timeline here of emg, development of arm symptoms, followup you had and scheduled follow up to come? How much worse are you since the last visit?
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Timeline, in January was the first I noticed my speech slurring, also others noticed kinda embarrassing cause I was with a church group and one of them thought I was drunk. Tongue fasticulasions I noticed in April, not sure when they started though. Early May first neurologist appointment with test done mid may. Last appointment with him was first of July. Next appointment end of September.
How much change since, I'm not sure, I so frustrated with myself. Walking is definitely slower, walking up an incline is difficult. I love being outside normally if I get in the woods, no one can get me out. The other day my son in law took me to the woods, I was walking around and got so tired I couldn't step over logs and tripped a couple times on brambles and stuff, I just had to quit after less than 30 mins. No normal, this actually got me more upset cause I so love being in the woods. I went to a massage therapist who worked on my jaw muscles and it seemed to help my speech though and I can chew better since. So I don't know if I'm better or worse. Does this make sense? I do have a speech therapy appt coming up next week.
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Also wanted to say thank you. I'm happy to hear that others have gotten a PTSD type response to loss of a loved one. Maybe that is what this is. Also thank you for such a fast reply. I just need a little contact I think.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,203
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
You are welcome. If you are really not sure if you are worse maybe wait and see what the speech therapist says since that is next week. You may be fortunate enough to get one with ALS experience. You do need followup but it is almost September so the wait is not outrageous

Of all the community based professionals who visited my sister ( 4 nurses, 3 PTs , an OT and 2 STs) the 2 STs actually knew and understood ALS and none of the others did.

( my family is FALS by the way and fairly typical in number of relatives I have lost 5 people to this in my lifetime)
 
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Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
I'm so sorry to learn of your family loss. It's a horrible disease, watching my mom die was hard enough, seeing all you have, I can't imagine. Thank you again for your reply. I'll fumble my way threw till next week's appointment. Any suggestions for keeping your mind of it? I have stopped looking at the internet, I did decide to ask here, I think many people must have been where I am...waiting, just waiting. TY again
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Just updating and seeing if anyone has advice. I had my speech evaluation, therapist said results were normal. I asked to see the neurologist earlier than the last of September. I saw him last week. He couldn't understand how the speech eval was normal, nor could I, as I still slur words. So instead of repeating the EMG, he suggested that I see a ALS specialist in Rochester. Rochester would probably do their own tests anyway. My appt in Rochester is November 30. I have no answers. I am pretty much the same, no dramatic changes anyway, so I'll see what happens and wait till November.
Wondering if anyone has any advice, especially on how to control my anxiety with all this. Any suggestions for dealing with throat spasms? They are short lived spasms but really grab, sometimes they take my breath for a second. Which is scary. Thank you
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Another up date. My appointment in Rochester has been moved up a month sooner. So I have a three day appointment beginning on October 31. I also went to a chiropractor who thought I should be retested for Lymes disease. I had a negative test earlier but he said there is like a 60% false negative chance...does that sound right? Any experience with this ?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,234
Reason
Lost a loved one
Diagnosis
09/2009
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US
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WA
Best advice, stay away from any chiro who claims you might have Lyme (research has found same prevalence of Lyme in PALS as the general population).

Throat spasms may respond to a small dose of a muscle relaxant, but I would ask about a swallow study first.

Best,
Laurie
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Thanks, I've decided not to go back to that chiropractor, he didn't help anything. I've been trying to get a massage appointment. Right now I have no medications, except OTC.
Also I was getting ready for my appointment in Rochester and I'm supposed to bring my medical records. I have very little records as I've been very healthy. I did realize that I've had this salt taste in my mouth for over a year and a half. It was extremely bad for 6 to 8 months and now it waxes and wanes. Sometimes like now I feel like I am sucking on a salt cube, sometimes it is barely noticable. I was told it was probably a virus and it would improve, by several doctors, ENT, GP, ect. Wondering if anyone has any experience like this. Anyway that's my sole medical record for the past 5 or more years.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,203
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
? Neuro visit, speech therapist, blood tests, EMG ,MRI are all needed medical records. Didn't understand your comment about sole medical record being salt taste

No one in my family reported that btw nor do I have it
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
My comment about salt taste and medical records. I was suppose to gather my medical records for my up coming appointment in Rochester. When I did get my records, prior to my most recent md visits, starting in May 2017, the only md visit is to see about this salt taste I was having and still have. I was first referred to a GI md, who did a endoscopy and colonoscopy, as I was over 50 and encouraged to have this done. They were both negative. I was then referred to an ENT Doctor who said it was most likely related to a virus. I don't know what is the cause of the salty taste, but it seemed strange that my mouth, throat and jaw is where I'm having so much trouble right now and my only previous complaints to see a doctor about had been this salty taste. I'm hoping I guess that this is a viral issue that can be treated. I have the most recent medical reports also from my primary doctor and the neurologist as well as labs and Speech evaluation. But that's all I've seen a doctor for since 1997.
Sorry if I didn't make myself clear. Yesterday was a really difficult day. I can't understand what is going on with me, I get weepy and weird. I feel as though I'm losing my mind. Thank you.
 

Signe

Member
Joined
Aug 17, 2017
Messages
20
Reason
PALS
Diagnosis
04/2019
Country
US
State
Iowa
Well tomorrow is the day I see the als team in Rochester. I'm getting very anxious about it. I don't know what to expect. I hope I find something definite out. I pray they tell me this is not als or any similar disease. But I am also praying to get some sort of diagnosis, even if it's that I'm having a mental health issue. Well wish me luck and I thank you all for your support. Now to try to sleep tonight.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
Good luck. Looking forward to hearing about it.
 
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