Feeling desperate

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Lucyl8

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Hi there


I’m feeling extremely concerned about MND, I have read the section on symptoms (thank you so much for that whoever created it, such a useful thread).

I’m 40 this month, mother of 3 young kids and since October I’ve been having some strange symptoms which doctors can’t get to the bottom of.

I started having issues with temperature regulation, night sweats and hot flashes. I had hormone tests done and all came back as normal. I have regular cycles so gynae said he very much doubts its perimenopause. I was referred to an endocrinologist and neurologist. Brain MRI is normal, Neuro exam was normal and endocrinologist tested for some rare cancers that can cause flushing (awaiting these results but he’s almost certain they’ll be negative). He has said he thinks my heat dysregulation is down to an autonomic issue of unknown origin, possibly Covid (although I didn’t have an infection before symptoms started).

Around the same time as the heat dysregulation started, gastro issues appeared- acid reflux and excessive belching.

I have also had sinus issues since this started and post nasal drip. Blocked ear.

I feel like I have excessive saliva, which I’m constantly swallowing.

I can’t remember when this started but at least for the last few months I’ve felt a slight weakness in my left hand. It’s almost as if it’s a bit stiff (base of thumb muscle) and awkward picking up small objects. Since I’ve focussed on it it now feels crampy. I am anxious so aware this could be me fixating on it.

Finally, I’ve found myself stuttering more in the last few months too. I wouldn’t say it’s a slur as much as a stutter.


So my questions, further to the symptoms thread I’ve read are-

1. I’ve read a lot of ALS patients have dysautonomia, how many people get it as a first symptom? And is heat dysregulation common?

2. Gastro issues can be part of dysautonomia. Is this a common sign of ALS?

3. I’ve read about excess mucus. Can this show up as a post nasal drip/sinus issues

4. I read that excess saliva isn’t an initial symptom. Is it that the mouth produces more or that the trouble swallowing makes the saliva pool. Can you have issues with saliva and no awareness of trouble swallowing?

5. Does the hand sound like ALS?

6. Can ALS present as stuttering?

7. What is the risk for a 40 year old woman with no family history?

Finally, my neurology said she thinks ALS is very unlikely, but I worry that’s because she sees me an anxious patient (which I am).

Thank you so much for all you do to help this community and people like me who are struggling with anxiety around this.

Very best wishes

Lucy
 
Hello there-

Please make sure to read here: Read Before Posting. In it you will read that MND is a disorder that affects voluntary muscle movement. The vast majority of what you have experienced has nothing to do with that.

1. No, dysautonomia is not part of the pattern that indicates concern for ALS/MND.
2. No
3.. Are you asking if post-nasal drip is associated with ALS? No, it is not.
4. This is more present when MND is advanced, and there is no question by then that there is a neurological issue.
5. Hand issues are caused by many different conditions, including tension or holding your child on that side more than the other. A physio can help assess and provide exercises to provide relief.
6. No, not really.
7. Very low risk.

Please keep working with your doctors. You may find more information pertinent to your issues if you search for "post viral syndrome" online based on your sinus, gastro and the like.

Take care
 
Last edited:
Thank you so much for your reply.

My neurologist said you can get dysautonomia with ALS, is it more that these symptoms/changes come later?

With the hand, it feels like the arm and hand (base of thumb) are tense as if I’m tensing them but I’m not. I understand this could be from many other conditions but I wondered if with ALS the weakness would come about before the tense feeling/cramping? As it stands although it might feel weaker I am still able to do normal things.

Thanks again for this, much appreciated
 
Dysautonomia in ALS is associated with later stages, the inability to move.

We cannot generalize about something as broad as cramps, weakness, and ALS. There may be different phases or overlap or no cramps at all in a given area. But as ShiftKicker said, what you have described does not sound like ALS at all.
 
Thank you for your reply.

Sorry to go back over this but the sensation in my arm/hand is really concerning me. I wondered how common it is for a right tense feeling, almost like the muscles have been overused before clinical weakness or as a sign of ALS? When texting the left hand feels a bit slower and feels tight and crampy. If there’s any reassurance you can offer I’d be so grateful.

I’m wondering if to push neurologist for EMG. Equally I don’t want to pursue investigations which will lead to more anxiety.

Thanks again, very much appreciated

I have been reading the site/info on MND Uk website. I’m concerned that my pain/stiffness is related to spasticity. Is this something people have experienced as an initial symptom before weakness? Could it be in the arm and hand?

Worryingly it also quoted sweating as a symptom. Has anyone experienced this in the early days?

I’m a mother of 3 young kids, I’m absolutely terrified. I hope you understand why I’m going back over this.

Thank you
 
If you had spasticity in performing tasks, you'd know about it.
The feeling you describe (pain, stiffness) is not typical of ALS onset. Failure, not weird feelings, is the core of ALS.
 
Thanks for taking the time to reply. I wish I hadn’t kept searching this page and just taken your advice.

I’ve read accounts of people with symptoms like mine, especially the excessive sweating, night sweats, excess saliva, GERD and also tense feeling muscles (like they’re about to cramp but don’t). It’s absolutely terrifying.
 
Definitely stop reading those...you do realize that our memories get shakier the further we are from an event, especially a traumatic one, and some people have a bit of an agenda or edge in remembering how they were diagnosed.

The only case to worry about and focus on is your own. You are the only you.
 
I appreciate you taking time out your day to try and reassure me.

There was one thread that referenced a study on how people with early stage has excess sweating and later the opposite. It also talks about excessive sweating on an ALS website but says they don’t yet fully understand the link. I don’t want to put words into your mouth but I guess you’re saying this isn’t what you often hear described? I’m focusing on the difficulty regulating my body temp because that was the first big change that came on suddenly 2 1/2 months ago. Followed by GERD and excess saliva.

At some point over that time, I noticed the hand feeling more clumsy, it’s only the last few days it feels stiff and achey.

I totally understand what you’re saying about focussing on me. I’ve seen so many docs and they don’t know the cause of my symptoms and I find that hard when I see them described on here.
 
Something else I forgot to ask.

If you have an EMG, can it indicate ALS signs but not be? Or is it clear from the EMG and chances of false positives are low?

Thanks so much
 
Yes that is why the criteria in their fine print speak of other causes being ruled out and we get mris and a lot of specialized blood work- to rule out other things
 
Thanks Nikki.

Do you have any thoughts on my symptoms? Finding this weekend incredibly difficult. I am so sorry and sad that anyone goes through this.
 
I should mention I’ve had a normal mri and Neuro exam but no EMG yet.
 
Update: please help, I am beside myself :(

I had an EMG on lower arms, legs and hands which were normal. However, I have for the first time started having twitches on my upper left arm (this is the stiff one) my question is, does a clean EMG on lower arm mean there’s no ALS on upper arm or do I need this testing too. There’s no twitching anywhere else.

I am still having excess saliva and mucus including post nasal drip, conscious of my speech and sometimes feeling my s’s are different. I also have dysautonomia (can’t control body temp/excess sweating) since October and constipation since July. Also GERD, excess burping.

My neurologist saw and examined me this week and said he doesn’t think I have ALS (twitching hadn’t started then). Could this just be early?

Does the EMG rule it out? Do I need bulbar EMGs? I am feeling extremely scared, I have never had twitching before or this tense feeling in my arm and hand, the twitching feels like a tiny spasm.

Thank you so much in advance

I should mention there’s been no lose of strength, the arm just feels very tight like I can’t relax it, like it’s about to cramp but doesn’t. Thank you
 
Twitching doesn’t matter. No the emg you had was sufficient. Please let ALS go and return to the doctor with an open mind so you can find out what is wrong. Focusing on ALS will interfere with and delay proper diagnosis. Good luck
 
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