I am so nervous I have ALS?

Status
Not open for further replies.

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
June 2020- Daily twitching of left eye (which continues).

October 2020- Pins and needles and numbness in left foot (sometimes in right). Bad right-sided headache. Two random bouts of vertigo (saw white lights).

November 2020- Daily twitches throughout body, especially in feet and legs when laying down. Choking sensation in throat area (i.e. feels very tight often). Body feels weird. Have had burning sensation and pain in limbs for no apparent reason. When I lay down at night, legs feel weird and different (aching feeling in legs).

Neurological workup. Nerve conduction study of upper and lower limbs (normal). MRI of Spine (normal). MRI of Brain (minimal non-specific gliotic foci within supranational white matter not typical of demyelination. No MRI evidence of established demyelination process. Neurologist said based on MRI report, I do not have MS. Neurologist concluded after physical examination that I had no signs for ALS.

I believe my symptoms all match ALS. Neurologist refuses to give me an EMG (said there is no foundation to give the tests and does not want to take my money). My right back of leg feels tight often.

I am scared I am dying (certainly feels that way).

Appreciate your thoughts / analysis.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Were you evaluated for Restless Leg Syndrome and related disorders? You can ask. It is just a few questions, boiling down to does that feeling improve at night if you move your legs. RLS/PLMD can cause the leg feeling you describe. They can also screw up your sleep, leading to all kinds of fatigue and feelings of being unwell.

Vertigo, headache, white lights sound like a migraine. Migraines can be triggered by lack of sleep, stress, etc.

Don't know why you think your symptoms match ALS, but they don't. That's great news! If you were dying of either MS or ALS, or much in between, you'd have a progressive loss or episodes of reduced function.

Try not to be scared. RLS and similar things are very treatable. Most of all, there are always ways to improve your sleep, from a clean furnace filter to a new pillow. You could be recovering from an unappreciated virus, even COVID. Give yourself time and fill the time with things you enjoy, albeit pandemic versions -- not sites like this one.

Best,
Laurie
 

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Hi Laurie. First, I am super grateful for your reply (it means a lot to me)!

The neurologist diagnosed me with functional neurological disorder and referred me to odd website known as neurosymptoms.org

I asked about the white dots on my brain MRI (neurologist said they are probably age related or from a history of headaches). I said those dots could be evidence of MS or ALS and that I am only 35 years of age (he looked at me weirdly). It is just so scary because I am having all these neurological symptoms daily (it is really hard to focus and do work). I feel weak and my body does not feel normal. Hard to explain.

The burning sensation could be the motor neurons being destroyed? The neurologist did not say much about the RLS or the twitches throughout my body. Should I get a second opinion?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,692
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
White dots ALS? Where did you get that? Utterly untrue. And they can differentiate MS from what looks like headache on mri. No wonder the neuro looked at you oddly.
no the burning is not motor neurons being destroyed. Motor neurons don’t carry sensation only movement.

FND is a very real disorder with real symptoms. There are a couple of office exam tests that point to it that your neuro presumably saw but they did other tests to rule out organic disorders. There are FND groups on facebook. I don’t know what other resources are available there. Here in Boston we have an FND clinic. If you didn’t get more direction than a website you might want to see if there is anything similar there.

none of this sounds like ALS. You have a diagnosis. Seek treatment for it because, unlike ALS, it can be fixed and the sooner you start working on it the better you will do
 

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Hi Nikki. Thanks so much for responding.

You stated: 'White dots ALS? Where did you get that? Utterly untrue'. Please see (PDF) Brain and spinal cord MRI in motor neuron disease

Please also see Motor neurone disease: 'If you were to design the cruellest of diseases, this would be it'

So do you think I have ALS (aka motor neurone disease)? I have problems swallowing, legs feel weird (a little weak), I have muscle twitches around my body (especially feet and legs when laying down). I am convinced I have ALS. I have some odd tingling and burning pain around body also, although not all the time.

I going back to the neurologist in a few weeks where I will insist on an EMG (he only gave me a nerve conduction study test last-time). Is there is other tests I can do?

I really appreciate your time. I saw a second neurologist yesterday who said at present, my neurological symptoms are of unknown cause. I do not think he was a fan of the Functional Neurological Disorder (FND) given to me by the first neurologist.

Look forward to hearing from you and others.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,692
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No they are not talking about anything that would be confused with a headache pattern in that link. There are MRI changes that suggest ( but do not diagnose ) MND and there are mri changes that suggest headache history. Your first post has what I think is a quote from your mri report and it is nothing like the report you would see in what is discussed in the article you linked.

I am not sure what your point was with the second article.

I don’t think you have ALS/ MND but do let us know what the diagnosis is when you get one
 

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Hi Nikki,

Does this look like tongue wastage?

There are dents on the edge on my tongue. I am not sure if they are teeth marks or evidence of wastage? I am very worried.

My legs feel weird and daily muscle twitches and body not feeling right. What tests can I do to potentially exclude ALS? My throat are feels tight 😭

thank you so much

(mod: photo of tongue removed)
 
Last edited by a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,692
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
no. I do not but it is the opinion of your doctor who sees you in person that matters. It is up to your doctor to make a diagnostic plan. I do not believe in insisting on tests as you plan to but an emg is the gold standard for ALS diagnosis. It also can show other issues
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,270
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Please delete your tongue pic; the members find those types of pics a little off putting. Nothing you have described sounds like ALS, so you are getting worked up unnecessarily. As Nikki said, an EMG is the gold standard test.

Keep working with your docs, but again, ALS should not be on your radar, so you can at least strike that off your list.

Just an FYI, someone with bulbar ALS cannot stick their tongue out like you are.

Take good care and stay safe.
 

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Hi guys, I am super scared I have ALS (i.e. motor neurone disease).

Here are my symptoms:

* Left eyelid keeps twitching daily for months.

* Cramp / pain in left thigh area.

* I can literally feel like nerves misfiring (running) in my brain area and around body.

* I feel like inflammation / tingles around body, especially the limbs.

* When I lay down, the misfiring of nerves feeling seems to be worse.

* I feel a choking feeling in my throat area, almost like it is hard to swallow (started in December 2020).

Since October 2020, everything seems to be getting worse. It started with a headache / migraine, vertigo, pins and needles feeling in left foot and has developed with the symptoms described above.

Any guidance would be much appreciated. Did MRI of brain and spine (brain showed minimal gliotic foci not typical of MS and no evidence of established demyelination). Nerve conduction studies in November 2020 were normal. Neurologist said clinical examination was normal.

Thank you so much! I literally feel like I am dying.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,225
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi, I've moved your post to your already open thread. Pleas keep posting here. Thank you.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
As we have said before, there is no reason to think you have ALS. You can keep reiterating and piling on symptoms but we're not going to think differently.

Please seek counseling for your health anxiety, which can help both your mind and body be at ease.
 

trimgem35

New member
Joined
Feb 6, 2021
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Thanks for writing. I thought daily muscle twitching and swallowing issues are classic ALS signs? I also have this constant cramping in my left upper thigh area. Should I be concerned? I have seen three neurologist (who have ruled out MS at this stage).

Should I insist on an EMG? It seems like all my symptoms match with ALS? I appreciate your time and guidance. I am very scared.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,225
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi trimgem-

It's really important for you to read back over your thread and see the answers you've been given. I also recommend you re-read the "Read Before Posting" pinned post again, particularly the section titled "Finally". It seems like you're unable to receive any sort of reassurance despite the multiple replies given you already, which means it's time for this thread to be closed and you to seek assistance for your fear of ALS from from your doctor or other source of anxiety support.

Please do not start another thread.
 
Status
Not open for further replies.
Top