Consumed with worry.

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Amandar8585

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Hi all,

i’m looking for a little support/advice aswell as someone to talk to about all the scary symptoms I’m having as my partner refuses to discuss the possibility of me having Als until i have seen my neurologist.
I’ve recently been referred to a neurologist by my gp due to tongue fasciculations and muscle twitches which happen all over when I’m at rest. Before the muscle twitching started, i had right sided eye twitching daily for 6 weeks which just disappeared. I saw the optician who said if it came back i had to go back and see him which so far, it hasn’t. For quite sometime i have had decreased strength in my upper left arm which initially started as a sore shoulder, which then led to numbness and tingling in pinky & ring finger. I have a 10 month old baby and carrying him on my left side is challenging after 5 minutes.
my gp recently carried out a neurological assessment on me to see if my referral needed to be made as an urgent or routine one, She made a routine referral after my assessment. She noted that my left calf muscle was shortened so my lower limbs are asymmetrical, I believe this to be due to stiff muscles, i seem to have an issue relaxing my muscles. She was testing my reflexes, left knee was a little excitable compared to the other. Then she went on to test the plantar reflex, now i felt her stroking my foot, but my toes didn’t react, they just stayed still. I definitely used to be ticklish. She also looked inside my mouth and asked how long my soft palate had been sagging on the left side, to which I replied I didn’t know. I’ve noticed it for some time, however back in March i saw an Ent consultant as i have a cyst on the sagging part of my soft palate, he said he wasn’t concerned as it was still mobile (moving up and down) however it still concerns me as I’ve read it’s caused by nerve damage.
yesterday i was climbing up and down ladders at work doing some painting and my left leg was shaking like i was struggling to bear weight on it. My joints hurt after any exertion, especially the hips and buttocks. I also have a problem when going to sleep at a night and I’m not sure if it’s related to the unilateral sagging of soft palate, but just as i nod off, i jerk awake and sometimes gasp for air like i have stopped breathing and this can happen for an hour or so. i think this contributes to my fatigue in the day as it’s happened throughout the night also as I’ve woken my partner up frightened. Occasionally i wake up feeling sore below the ribs and I wonder if it’s the diaphragm being weak and I’m struggling to breathe in my sleep? Other symptoms are i occasionally struggle to swallow and my lisp has gotten slightly worse as if after talking for a while my tongue is tired, so my pronunciation sometimes sounds a little sluggish, same for chewing too. occasional jaw tiredness, but i do always feel like my mouth is dry.
Any advice is welcome, sorry if any of my post has offended anyone as this isn’t my intention, I’m very anxious worrying about this. Sorry for the long post too.
 

affected

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Hi Amanda,

The best place to start is reading the link below through twice, quite slowly. We often skim read and grab bits out when feeling really stressed and worried. Try not to do that. It does address all your concerns.


When is your appointment with a neurologist?
The best thing you can do is focus on your beautiful baby (congratulations!) and look after yourself til you see a specialist.
You certainly are not describing ALS in any way at all which is great. That doesn't mean it is nothing, but I bet it is something that can be treated.
Go to the neurologist with an open mind, most of them rarely see ALS, but do see a huge range of other diseases they can fix. Don't walk in there and ask if the doctor thinks you have ALS, let them look at you with an educated and open mind and decide what diagnostic paths to take.

Please let us know the outcome. Looking after your baby and yourself now is the best thing you can do - worrying won't do a single thing to help whatever the outcome is.
 

Amandar8585

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Sorry, i just read the rules again. Thanks so much for your kind words. I’m really worried with the sagging of my soft palate that it’s bulbar onset. I believe it’s a long road to being diagnosed. Not sure how i will cope waiting in the meantime. I’m awaiting my appointment coming through which I believe will be a telephone consultation due to the covid 19 pandemic. But i will keep you posted. Thanks again.
 

Amandar8585

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Hi affected,
Can i just ask you why any of what I explained doesn’t sound like als? I appreciate any feedback you can give me whilst i await my neurology appointment. It’s only from what I’ve read in relation to als, and i do have some of the symptoms, the shrinkage of muscle in my left leg, which also kept me awake last night with a pulsing twitch in my calf that i sat watching, and my left leg continues to feel weak when i walk also. And the soft palate weakness (unilateral sagging) also, and upper arm and shoulder weakness. The oddest thing of all is how all my issues are on the left side of my body, again, i read that it’s also possible to be related to als. Apologies for asking

again.
E2E2EAB5-5154-40C3-AEE3-3536368C36C0.jpeg
 
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affected

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Hi Amanda - did you carefully read the link I sent you? Please go read it again, even if you did, as it does answer your questions.
I'm sorry we can't do anything remotely by text.

To answer why you are describing ALS - you don't have any actual failures, but lots of things that are vague and non-specific.

Your photo looks normal to me, but then we constantly remind people that photos are pretty useless. Just wait until you get examined by a neurologist - write down all your questions so you feel ready for the appointment.
Until then, you can choose to stay off this site and stop googling and do something positive each day. We really can't do any more than say - you don't display symptoms of ALS and see a doctor for help and a diagnosis of whatever is going on. I do wish you the best.
 

Amandar8585

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Thanks so much, I’m back to work tomorrow which will keep me occupied til I’ve been seen. I’ll update once I’ve seen the neurologist.
 

Amandar8585

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Hi again,
So as i am still awaiting an appointment with a neurologist i thought i would ask a few more questions. Upon examining myself it is clear i have muscle loss to the left side of my body, just below my left rib on abdomen, it really sinks in compared to the right side. This has not always been like this. My hands are weak, my arms feel like they are falling asleep. My soft palate was sagging, kind of like a curtain on the left side, this has now progressed and the right side is significantly lower too which now you can only see a little of the back of my throat. I have read a lot that have said on this forum that say you don’t feel, you just fail. However I’ve read quite a lot on als that says onset can be progressive weakness. I could be looking at 18 weeks to see a neurologist and I genuinely feel in my heart that i have this dreaded disease and possibly have had this a while, i feel I won’t last 18 weeks. I don’t understand the muscle loss in my feet and legs as I’m active and my job has me on my feet for 12 hours a day. All blood tests have returned fine. I regularly need to clear my throat of mucus, my voice is deeper and goes hoarse after short conversation, the twitching/fasciculations continue but are worse in my left leg. My resting heart rate seems to have dropped to 43, but my ecg was fine. I’m shattered all the time. I wake in the morning and my chest and below my ribs, is really sore and stiff and i feel i cannot take a deep breath, i even get short of breath just talking.
I presented myself to a&e last week for the shortness of breath, nothing was obvious to them that needed urgent medical attention but the dr did say that I definitely needed to see a neurologist sooner rather than later and said he’d send a letter to try and speed it up. Has anyone presented with any similar symptoms? I just don’t see what else it could be and wish this wasn’t happening.
 

KarenNWendyn

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You said “i feel I won’t last 18 weeks”.

Please realize you are talking to people here who are paralyzed and dying from ALS.
Realistically, your anxiety is so deep we won’t be able to console you and it’s really not our job to do so.

Your symptoms don’t suggest ALS at all. I’m sorry 18 weeks must seem like an eternity when you’re scared. But there’s not really much more we can say.
 

Bestfriends14

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Amanda, you are not describing ALS in the slightest bit. Please stop, as kindly requested, asking what forum members opinions are about your non-ALS symptoms.

Are you a neurologist specialising in neuromuscular disorders? If you are not, you cannot diagnose yourself with atrophy. You have ZERO symptoms of this disease so you will be asked again, please stay off this site and report back once you've seen a neurologist. Don't pile on symptoms, do not state how anxious you are, just don't.

Take care and stay safe.
 

Amandar8585

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Apologies, I sincerely don’t mean to offend anybody affected by this cruel disease.
 

Amandar8585

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Sorry, as i have stated to karen too, I genuinely don’t mean to offend anybody. I’ll stay off until i have seen the neurologist.
 

Amandar8585

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Hi all,
Just a little update since my last post. So i managed to get an appointment on 8th July with the neurologist. Luckily it was a face to face appointment where he carried out strength tests etc on me and gave me a once over. He said he isn’t initially concerned about als and had the nurse run bloods on me (photo attached) he has also requested nerve conduction tests on me but he said he doesn’t know how long the wait will be given the current situation. He sat me down after examining me and said he believes i have peripheral nerve hyperexcitability, has anyone else experienced this? If so, did anyone appear to have one sided muscle loss? My muscle loss appears to be left lower arm, and left leg, mainly lower calf area but apparent in the thigh too. I’m still having muscle twitches, mainly at rest. If i over exert myself i find my sleep is awful which then has an effect on me the next day, the worst symptom being the throat spasming. My soft palate is also still really low, again it’s lower on the left side and will move with a deep breath which is sometimes a struggle. Still having left sided shoulder pain and occasional neck pain on the same side too. Still very worried but also feel a little better knowing I’m on the right path to hopefully finding out if it’s als or something else. My question is, would blood tests detect als, or is it just to help eliminate other conditions? Thanks all for your time and patience.
 

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affected

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Still no symptoms of ALS - blood tests don't detect ALS, but of course they are done to find what is going on. I suggest if you have continuing concerns the only thing to do is return to your doctor. A medically trained person who can examine you and decide on the next tests is the way you need to go. Asking terminally ill people and their carers to continually take you through this is not helping anyone.
You have lots of questions, which is fair, please ask them of your doctor, maybe you can even get a televisit to just go over your many concerns and be reassured. All the very best, please do let us know the diagnosis once you have it as it helps to reassure other anxious people with non ALS symptoms.
 

Amandar8585

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Sorry for stopping by again, don’t mean to bother anyone. I just wanted to ask if anyone experienced one sided sagging of the soft palate? The palate moves when i say ah, it just hasn’t always looked like it currently does and again it’s on the left side along with all my other symptoms. My speech is nasal constantly. My mental health is really suffering during the wait for appointments, it’s affecting my job and I’m just not myself with the constant worrying. It’s hard to get Als out of my head when so many of my symptoms lead me here to begin with. The neurologist suspects peripheral nerve hyperexcitability, but along with the continued loss of muscle from my left side, it’s all suggestive of Als and I’m really struggling. Again, I’m so sorry, i know you are all suffering yourselves, and my heart really goes out to you, i just don’t know where to turn.
 

Nikki J

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I am sorry you are suffering but you really need to talk to your neurologist. They saw you and were able to examine you.

have you asked your gp for help dealing with your worry? you said it is affecting your life. Looking for answers is very stressful , tests take time, neurologists may want to see if there are changes between visits and coronavirus makes everything harder
 
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