Weakness/fatigue

Status
Not open for further replies.

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Do you know of any cases of irregular onset for ALS, beginning with generalized weakness and then developing in a specific area? Now I know this may sound like nonsense, because it
generally doesn’t happen like that.

I remember years ago, before his diagnosis, my dad started feeling really weak in all his body, a fatigue that didn’t go away with resting o sleeping or going on vacation. Went to doctor, who referred him to a neurologist, They told him he had stress. Then a few months after that his left hand stopped working and was told it was just spine problems (which he had, to be fair). He was finally diagnosed a year later but doctors refuse to admit the his initial weakness was related to ALS, that it was, rather, a coincidence. Of course having stress doesn’t exempt you from ALS, so we assumed he was just a stressed person that happened to develop the disease later on.

Now a weird thing is happening to me. I started feeling very weak last November, but blamed it on stress and burnout for a few weeks.
Took some time off work, tried yoga, relaxed, took supplements.
It’s gotten worse to the point that I can’t stand for long, my hands always shake unless they are resting on a support. I lack balance and feel like I’m always about to fall (and fell twice, blaming the rug). I wake up feeling like I can’t get out of bed, but then I do, with stiff legs and tingling everywhere in my limbs. Takes me 10 minutes to get up and sometimes my arm is numb for hours.
I have a hard time braiding my hair the way I always did because my arms can’t keep that upright position that long.

I have a cervical disc erniation but I can’t imagine it causing all this.

I had blood tests and basically every test you can image to rule out everything else.
They tell me it’s anxiety, overreacting to normal fatigue, that I “probably” have PTSD after being a caregiver for my dad for so long.

A month ago I did an EMG on my left arm that displayed fibrillation and nerve pain.
My doctor says its my cervical problem, and refuses to run other EMGs.
Another neurologist told me I’m “too young for ALS” at 34, I was shocked to be lied and gaslighted like that.

I also have painful cramps every night. I notice speech problems (my spouse noticed too and blames it on anxiety as well).

Not trying to have a diagnosis here or to disrespect pALS, but I’m just kind of worried because I see a pattern here.

Recently I talked to a patient whose first symptom was “not being able to run fast as she did and thinking she was out of shape”, and only later she started having lack of strenght in a specific area. Makes me wonder if generalized weakness might me a symptom after all.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,110
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm sorry for the loss of your dad and the issues you are having. Maybe the doctor meant that usually if you had familial ALS it is around the age of onset as the last generation, i.e. how old your dad was when he was diagnosed. So that's why inheritance wouldn't fit. And it's true that generalized weakness isn't typical of ALS onset, because the motor neurons do not all die at once in different areas.

If you can post the full EMG report with tables and your name concealed, we could be more helpful.

Best,
Laurie
 

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Thank you Laurie, thank you for your kindness.

Yes, I have been told that familial ALS usually starts at the same age, although that’s not what that doctor meant (but that’s another story).

I’m attaching my EMG results. Unfortunately the brief report at page 3 is written in Italian but I’m translating it here below.
(I hope I got it right, they didn’t explain the meaning of these words to me):

“Signs of minimal neurogenic rearrangement, associated with neuromuscular irritative aspects in the districts of C5” .

It is true that I have one cervical hernia (seen in my MRI). Both my general practitioner and my chiropractor say the herniated disc is unlikely to cause all my symptoms and urge me to get a second opinion from another neuro doctor. But as it is now I have already seen 3 different neurologists (one of them is an ALS doctor).

I’m not saying that I don’t want to trust them (after all they are doctors and I am not!) but:
I hear a lot of misdiagnosis stories and I just don’t understand how a family member of a pALS with a EMG that displays problems, with weakness going on for months can be discarded like that.

It seems like the magic word “anxiety” fixes it all for them.

I’ve never ever had health anxiety before now. If there was something else, if they could point to another solution or a reason for all this, I would understand, but saying I have “nothing” it’s simply not true and that’s what makes me anxious.
 

Attachments

  • 3.pdf
    1.5 MB · Views: 36
  • 1.pdf
    988.8 KB · Views: 27
  • 2.pdf
    1.2 MB · Views: 25
  • 4.pdf
    1.2 MB · Views: 24

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,110
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm a little confused because the EMG portion of the test is not here. Is there more? What I see here points to a disk problem at the C5 level, as you say.

Remember, just because someone says "it doesn't look like ALS" doesn't mean that they don't understand your family history or are misinterpeting the test. The vast majority of FALS does not show up at a much younger age, and there are specific EMG findings before ALS would be considered.

As to another explanation, disk problems can affect more than you might think, especially since dealing with one problem area can put more strain on others. That is why PT is often recommended for radiculopathy (which often includes numbness and tingling whereas ALS onset does not) such as you have, at least to set up a home regimen that can help minimize the symptoms.

But then again, some pain, stiffness and weakness are not going to be directly explainable. There are just too many overlapping factors. Sleep quality (not just getting to sleep, but enough hours in deep sleep) is a biggie that affects almost everything, so that's another area that might be fruitfully explored.
 

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Thank you very much. No, unfortunately this is all there is to it. Just these 4 pages. Is it not a complete EMG?
Would you advise me to ask a neurologist to run one?

My fear is that the hernia is not a cause of the symptoms but a consequence of the disease. (more or less like my dad who had developed bad posture over time, to compensate for muscle atrophy in some areas). The trembling and “weakness” is just too much lately and I feel like I can’t even lift a glass of water.

Anyways Thank you so much Laurie for your welcoming kindness.
I know I speak for a place of fear and I hope everyday that I can find i don’t have ALS, that I’m not following my dad’s path.

But I’m just seeing all dark now.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,482
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
What did you have during the procedure? The emg involves needles inserted at an angle into various muscles. they start with a relaxed muscle and then usually ask you to tense it. A nerve conduction study is often done at the same time which involves electrodes on the skin and small shocks. The needle test is the important test for ALS

ALS does not cause disc herniations

your lifetime ( lifetime! ) risk of ALS is about 1 percent as the child of a PALS. Your risk at your age is much much much less. Your emg from what you have said does not indicate ALS and apparently your clinical exam does not either Please continue to work with your doctors to find answers
 

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Thank you for your clear response. Yes I had needles inserted in 3 areas, first with relaxed muscles and then with a little tension.

I don’t know if they did a nerve conduction study but given the report I think not?

I will ask my doctor about it next time, unfortunately he could not see me for many weeks because of COVID.

The only thing I understand is that the EMG did not come out normal.
Yes, I had a clinical exam back in December and it was fine - just a mild hypereflexia and a lack of abdomen reflexes (reason why they made me do the MRI that eventually displayed the hernia).

At that time I was not having regular cramps yet.

I know, as a child of a PALS I shouldn’t worry this much.
But my dad’s ALS is only probably SALS since we don’t know a part of his family at all (uncle and first cousins, etc) and many other people died young, before his age of onset (his older brothers; his father).

He was tested for SOD before a trial, but not for c9 (I hear it’s the most important one) and many other genes. Idk why.
That makes me worried.

He passed away more than a year ago.

Thank you so much again. I’ve been reading pages and pages of this forum and I find it very informative, I’m learning things that I did not know or understand in years of caregiving for my dad.
 

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Hi all, I just wanted to update on my situation, I decided I’m going to see a neurologist again, after falling (again) due to not having balance while walking.
I have a question after reading some pages on this forum, I noticed many people quote eye floaters as neurological symptoms, I never heard of such a thing, and since I have so many of those, I was wondering if this is something I should tell the neurologist during the visit?

I have numerous black floaters (they sometimes partially block my view when reading) for which I went to the eye doctor back in November; he told me he saw nothing during the visit and that my vision was 10/10 fine. He gave me vitamin supplements that could help with the floaters. I know they don’t go away, but since then, they have grown a lot (in number and in density of color - I see many black spots at all times)

should I be mentioning this?

thank you again.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sure you should mention the floaters - not an ALS symptom. Balance issues are not really either.
So don't ask if you have ALS, present your symptoms and let the doctor decide what to do.

PALS fall because their legs fail to work. My husband never had balance issues, he would simply take a step, except that his leg would not, and down he would go in complete surprise.
Let us know when you have a diagnosis as it is really helpful to anyone later reading your thread to know what it turned out to be. All the best.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,110
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Floaters can be a sign of retinal damage if not already checked (where you get dilating drops and a few minutes later the really bright light). Sometimes this is done at an eye doctor's and sometimes not. If the floaters are getting a lot worse and more numerous, I would see a retinal specialist just to be sure. If no concern there, I would go back to your internist because there could be a blood pressure problem.

The report you attached is the nerve conduction testing with shocks. The missing one is the one where the needles are used.
 

SulleyAnneC

New member
Joined
May 19, 2021
Messages
7
Reason
Lost a loved one
Diagnosis
00/0000
Country
IT
State
IT
City
Milan
Thank you both so much for the explanation. Yes I had my retina checked a few months back and there was no concern there. Will be mentioning at my next neuro visit for sure.
Yes, I will be updating with news as soon as I know something
 
Status
Not open for further replies.
Top