8 years of really slow progression or plateau?

Linnhj

New member
Joined
Jul 11, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SE
Hi! Im 32 years old with an long and atypically story. Sorry for my English I’m not native speaking.

Jan -13 I started to have wide spread fasiculations all over my body. Left hand became a bit uncoordinated and felt week.
EMG summer -14 was clean. During the summer I developed a IV cranial nerve palsy and double vision. Neuro noted positive Hoffman left hand brisk reflexes lower extremity and a few beats of clonus bilateral. Lumbar puncture was clean apart from slightly elevated IgM antibodies and that the white cells where mostly lymfocytes. I also had 2 times of high ACE in serum. The plan was to repeat lumbar puncture to look for sarcoidosis.

Summer -15 I noticed slight atrophy of hypothenar muscles left hand and of lower arm. Did not go back because I felt better. My hand slowly began to work properly again even though you still can see the atrophy. I’ve also developed something like slight visual snow phenomena that I still have.

The years went by and I was totally fine until recent. For some time I’ve been having sensation loss under the feet bilateral that comes and goes, never more than 10-20 minutes. I had my second baby 9 weeks ago. I also had COVID 12 weeks ago. Last 3 weeks the fasiculations has come back. Not as frequent as last time but still there and mostly in places I feel weak. I feel I have no pressure under my left toes dig 2-4. It’s like I can’t activate the small muscles of the foot. (Bending the toes at the mtp joint is impossible on the left) I’m still strong in the calf muscles so I can walk on toes etc. My bum on the left leg is weak. I’m having trouble with one leged squats which I have been able to do before.

The symptoms in my left arm came back very suddenly 2 weeks ago. I feel uncoordinated again and it has become hard to lift the baby with left arm cause I feel weak under the scapula. I dont know for sure when these symptoms started they might have sneaked up on me but before pregnancy I was at the shape of my life, really strong. One weak ago my right leg went in to subcramping. My calf feels tensed all the time and my hamstrings most of the time. There’s also like my left hand function came from one moment to another.

2 days ago I saw Neuro again. He found brisk patellar reflexes normal Achilles. No clonus or babinski. Asymmetri in upper extremities with Hoffman positive on left, finger flexors positive and more brisk then on right. He saw atrophy in hand and maybe in infraspinatus. Didn’t notice any fasiculations. He didn’t note any face weakness or tounge fasiculations. The night after I woke up and my left lower face closes to the lips felt weak. Since then my tounge fasiculates and my lip most on the left upper side fasiculates. I have slight dysarthria and keeps biting the inside of my cheek. He also found slight numbness under feet and in finger tips.

Why are things progressing this quick?! Have any one experienced the same? I was fine for 8 years and now I sit here with my new baby feeling so devastated. Signs of both UMN and wasting can’t be that many other things . Neuro wants to repeat MRI,EMG and lumbar puncture but this will take forever to get done since it’s summer here. Have anyone experienced such rapid progression or that long plateau phase? Any one with trochlear palsy from early on?
 
Last edited by a moderator:

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm sure you have discussed this with your neurologist and the possible link to covid as ongoing neurological symptoms are often found after covid.

You aren't describing ALS in your post however, even though I'm sure you are concerned with the things happening.
I'm also not sure what you mean by things progressing this quick - you don't have any ALS symptoms, just a bunch of vague reports, and no actual clinical findings.

Please work with your doctors as only those actually examining you can really give you anything useful.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,288
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
We don't know that you're progressing to anything, or that your current issues are connected to the issues of eight years ago. But you're only 3 months out from COVID and 2 from pregnancy (congrats on the baby!). Both can cause myriad issues. It is also not true that UMN/wasting can only be one thing, and you say the doc only found localized atrophy, yet you report widespread issues -- a very encouraging indication, among several others, that this is not ALS, and fourth nerve palsy has nothing to do with it, either.

Given the recent pregnancy, iron, B12, red blood cell count, are all worth checking and perhaps some dietary changes worth trying empirically, whatever the labs. Sleep and daily exercise (child care isn't quite the same) are also relevant -- not easy to balance two kids/one infant, but they could have great impact.

Best,
Laurie
 

Linnhj

New member
Joined
Jul 11, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SE
Thanks for your replies! I’m aware my story isn’t the usual. Vitamin levels have been checked. What worries me is that I’ve clinical waisting in my left hand/lower arm and the infraspinatus muscle. The hand/arm has been unchanged since -15 but now have become harder for me to use again. The shoulder I think is new. During two-three weeks i have developed new symptoms. I have noticed my left leg is weaker and I also think there might be slight waisting of smal foot muscles than usual and that my right leg is all cramped up all the time. Since two days I also have tounge fasiculations and a partial central facial palsy on my left. And twitching. The reflex pattern above suggest UMN-damage. I recognize the fasiculations and feeling in my arm from last time so I kind of think they are the same. Have you ever heard of ALS taking a break/or developing really slowly for years and then suddenly bring you clinical visible symptoms from different body parts in days/weeks?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Nope, ALS doesn't present in that way. We find that stories that really aren't the usual, aren't ALS.
In any event, working with your doctors is the only way forward and I truly wish you the best. Please let them join the dots, as you are making connections that are simply not there.
 

Linnhj

New member
Joined
Jul 11, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SE
Sorry to bother you again. Since the appearance of my facial and tounge symptoms neuro’s is now saying I full fill criteria for ALS, still have to wait for EMG for getting diagnosed though. I can’t wrap my head around things moving so quickly. Neuro don’t want to talk about prognosis before officially diagnosing me. Have you heard of any cases similar to mine? Should I except things to go really fast since I’ve developed clinical symptoms from all limbs and bulbar over just 3 weeks? Can it slow down? I thought the usual path was profound weakness in one place than the next. Not a little bit of weakness in multiple places at the same time. What’s your experience.?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,700
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am sorry this must be very frightening. Is this person a neuromuscular/ ALS specialist? You definitely need to see one as we have seen a number of misdiagnoses by general neurologists. I am confused how you can fill criteria yet they can’t diagnose you? Either you fill them or you don’t. Since you haven’t had the emg it would seem you don’t meet criteria yet and if the emg doesn’t show what they expect then you still would not?

this all over progression you report really sounds unfamiliar so I can’t comment.

please make sure you see an ALS expert. however this turns out you need someone who really knows neuromuscular disease
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
but you said your latest symptoms are in your left leg?
 

Linnhj

New member
Joined
Jul 11, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
SE
He said it’s a clinical diagnosis and since I have signs of both upper and lower involvement and now also tounge fasiculations and subtle dysarthria that it can’t be anything else but wants to do the EMG since I’m young.

3 weeks ago I was fine. Then I noticed fasiculations again and noticed that my left leg was a bit weaker. Can’t say when it started. My left arm also felt weak again after recovery from the episode a few years ago. Then all of a sudden my right leg tensed up mostly calf and hamstrings (this I know for sure is new) Then I noticed a slight slurred speech, and the tounge twitches. Also my lips feels weak especially on the left which I think is causing the slur. Also don’t no when it started for sure but neuro didn’t see it first time and now he does. The tounge I know he looked at the first time, the lips I’m not sure if he noticed. I also wake up during the night from a swallow reflex (think it might be a twitch) and my voice seems a bit weak. Can it really go this fast, wouldn’t you expect one part to fail “more” before it’s everywhere? Or do you think I just haven’t noticed these slight signs for some time?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,288
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
This doesn't sound like the person who should be diagnosing you. An EMG "since you're young?" An EMG is always required for the diagnosis, at any age. The 3-week onset you describe does not fit at all. I would look for a neuromuscular specialist as others have said.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,490
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm really confused, but hope that this is all being done by a neuromuscular specialist as lgelb says.
I've never heard of ALS coming on in just 3 weeks body wide.
Let us know once you have EMG findings please, I would be seeking a second opinion really fast as this is too strange.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,270
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
No, it cannot move that fast with symptoms in nearly every spot on your body. That's not how ALS comes on. It really sounds like you're not working with the correct medical professional to get to the bottom of what is going on. It sounds not at all like ALS, but if you need yet another reassurance, it's best to get assurance from an ALS neuromuscular specialist.

Good luck to you.
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
79
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
City
Cedar Rapids
@Linnhj - your symptoms plus visual occurrences- ask your neuromuscular doctor to test for glycine receptor antibodies. It’s just a blood test sent to Rochester.
 
Top