What’s next. Help please.

Grakee1

New member
Forum Supporter
Joined
Jun 10, 2021
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
I’ve held off on posting on your Forum as it seems it upsets many people with this horrible disease. Humbly asking for your thoughts and in regards to my journey.

I’m a 59 year old female and in March of this year I began to experience twitching in both calves. Didn’t think much of it and really never gave it a second thought. After my second Covid shot I experienced some unusual fatigue In my left hand after gardening. As weeks passed it became more weak and extended into the forearm and bicep. Next it traveled to the right hand and again some fatigue. Twitching than moved (periodic twitching) in thighs, arms and twitching in torso. It’s noted with this weakness and fatigue I experienced lots of joint pain (what appears to be) in the elbow and fingers.

I then began to have some hoarseness and possibly an issue with swallowing. Went to an ENT and she scoped my throat indicating that my arytenoids glands were swollen (glands under the larynx ) and she felt that this was due to acid reflux. I was given a prescription for Prilosec which I am on now.

Next I had an appointment with a neurologist who indicated that he saw some Hyperreflexia but it was an all extremities and told me not to worry.

I had a second opinion with a second neurologist who noticed possible atrophy in my left arm, possible weakness (non dominant arm) and ordered an EMG. It came back normal and it was done and all four extremities.

Lastly have been waking up breathless in the middle of the night. Almost like hyperventilating? Also wake up with tightness under ribcage.

Like many others who come to the site and are worried does it sound like anybody else’s story? Thank you so much.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,695
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Your emg is hugely reassuring. Atrophy and weakness if due to ALS should definitely be reflected there.

go back to your doctor about your breathing issues. A sleep study might be in order
 

Grakee1

New member
Forum Supporter
Joined
Jun 10, 2021
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Ok. I will do that. Symptoms all seem too coincidental and happening simultaneously. You read EMG’s done to soon… etc. You’re very kind for responding.
 

Grakee1

New member
Forum Supporter
Joined
Jun 10, 2021
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
63E2004B-291D-4B06-8639-E1BA239BF471.jpeg Wondering if you could tell me what N 1+ means. This is where I’m feeling some weakness. Is this the very very early stage of Als? I’ve had MRI’s and lots of bloodwork all normal. Any input would be appreciated.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,695
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
You had another emg? there must be a conclusion that you did not post? At a guess it says no signs of denervation. No it doesn’t look like early ALS. The N means normal so the N-1+ would mean the amplitude of the MUPs in those muscles was borderline large. I doubt your doctor thinks it is significant at all. What were you told?
 

Grakee1

New member
Forum Supporter
Joined
Jun 10, 2021
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
I was told mild increased amplitude in the adm and apb. Every other area was normal but mild increase in the exact spot where are I feel pain and cramping. No sign of denervation but in my brain I’m saying to myself “not yet”. What does borderline large mean and what causes this? I don’t have any nerve issues and no arthritis.
I do appreciate your help! Also, yes same EMG I just was able to get a hold of the report.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
There is not a single indication that would concern anyone about ALS, and 2 neurologists have told you this, so that is a great starting point for you.
I would definitely return to my doctor and ask all these questions and what is next.
Your doctor can give you the very best advice as they can examine you and have your history to give full context.
 

Grakee1

New member
Forum Supporter
Joined
Jun 10, 2021
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Interestingly both neurologist said sometimes the EMG’s can be done too early and they follow their patients to see if things progress.
The neurologist said “no pathological meaning to results”. I have no follow up appointments and neurologist has referred backed to primary care. Primary has no answerers and so cramping, fascinations are what I’m stuck with

One final question. When you’re asked to flex a muscle and your inability to do so because of pain… does that make a difference in an emg result?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,695
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am not going to argue the neurologists only say it is nuanced and experts have written that you need to have significant motor neuron loss before feeling symptoms

re your question there are pals who have emgs of PARALYZED muscles that show ALS changes So no
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I think that the most important thing here is, while you say both neurologists say the EMG can be done too early, they don't want to do any follow up with you. This is good news!
We often find here in this section that doctors are reported to say certain things, but we are not there at the appointment to get the context.
I am just pulling an example, I am not saying this is your case, but it is very important as an example.

Doctor: Your exam and tests show no sign of ALS.
Patient: But is it possible, even just a little bit, that I am very very early in a disease and it hasn't shown yet, but would show later on another EMG?
Doctor: Well, yes it is possible, it could happen, but I don't believe this is the case with you.

Patient comes here and says: the doctor said it is possible that the EMG is done too early.

In fact, the doctor was pushed towards saying this and would never have offered this as information to the patient, but would have simply said: Your exam and tests show no sign of ALS.

This is where, for us here, how can we possibly sit and argue for or against any report of what symptoms you have, when we are not examining you, nor what a doctor may or may not have said in any particular context?

There is a condition called benign cramp fasciculation syndrome - it is common and it is BENIGN. There are forums for people who suffer from this and it may be worth you joining one so you can discuss your symptoms and condition with those who experiencing the same.

Lastly, PALS don't experience pain that prevents them flexing a muscle. They feel totally normal and simply cannot move the muscle.

I do hope we have helped and that you can return to your doctor and find an appropriate forum to continue discussing what is going on for you.
 
Top