Progression?

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Amandar8585

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Sorry to post again, I couldn’t figure out to post on my first original thread.
So a little update, i had nerve conduction and emg studies on 12th November and I’m awaiting the results, not sure how long they take. The physiologist stated that there were excitable nerves and he wanted to assess the results before sending them to my neurologist.

I’m concerned about my progression, with swallowing, mainly dry bulky foods but on occasion just swallowing at all. Sometimes food just sits in the back of my throat and I’m telling myself to swallow but it won’t happen. In order to eat i have to fully mush the food in the front of my mouth, that still doesn’t always help. I can start a yawn,but cannot satisfyingly finish one. I can’t sneeze either, again i feel the initial tickle in my nose, and then nothing. I’ve also noted my tongue is significantly smaller, it sits a lot lower in my mouth as if there’s a void below my tongue.

My breathing has become worse, mainly after a day of cleaning around the house as I’m furloughed from work, if i talk too much my voice becomes soft, weak and occasionally a whisper and then i suffer shortness of breath. I did have covid but wasn’t poorly with it but my dr has put my shortness of breath down to that and given me an inhaler which doesn’t seem to be doing anything and i feel the weakness is from nose, throat and chest. I have days without severe shortness of breath., that’s when I’m having regular good sleep. Shortness of breath is worse if i have only managed 6 hours sleep. The shortness of breath feels like a pressure in my chest and tightness in my throat and my nose feels congested at the same time.
Nothing has failed as such, but the breathing issues are terrifying. Is this common progression?
 

Nikki J

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Re your test results. Bad news generally travels fast so the fact that you haven’t heard sounds encouraging.

the timeline and the fact that you also had leg concerns and your descriptions do not sound typical no. Aggressive disease would be very obvious on emg and whatever they saw it doesn’t sound like it was. It also sounds like the abnormal findings could have been on ncs which would point away from ALS.

I don’t know when the covid was but it is not unusual even for apparently mild cases to be followed by severe respiratory symptoms and also neurologic symptoms. Just yesterday I heard of a young doctor who had an initial mild illness thought he was better and then had such bad respiratory difficulty he was admitted to hospital.

call your neurologist and tell them you are worried about the results. I am sure if they are submitted electronically they are available
 

lgelb

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As Nikki points out, sporadic and sometimes severe breathing issues are common post-COVID so I would not totally discount your past viral infection as a contributing factor.
 

Amandar8585

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Thank you both for your reassurance, i’m extremely worried with ongoing symptoms and really hope it is something else. This all started when I noticed the asymmetry from left leg compared to my right leg, this also applies to my left arm, shoulder etc, my whole left side including my face has lost its bulk.I tested positive for covid on the 13th October. I have had a chest xray at hospital since then which didn’t show anything. I’m going to ring my neurologist on Monday to see if there is any news. Thanks again.
 
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Amandar8585

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So I finally received my results for ncs and emg but no reportCan i just request a copy of this from the neurologist?

The letter says,

Amandas ncs showed occasional limb fasciculations that would be compatible with mild peripheral nerve hyperexcitability. There was no evidence of a large fibre peripheral neuropathy or myopathy. In addition, there was no evidence of an anterior horn cell disorder or more severe neuromyotonia.

The concerning part for me, which i addressed with my gp, is that none of my symptoms match the peripheral nerve hyperexcitability diagnosis. I haven’t seen my neurologist since July to let him see the changes I’ve noted. And he’s arranged to see me on 17th of February on a wait and watch. My gp has asked me to self refer for some physio as my upper back muscles are constantly tight and painful aswell as muscle rub and to check in with her in 3 weeks.
My breathing is no better and when i am fatigued, if I can’t bring the shortness of breath under control, i hyperventilate and this is happening more often. The entire left side of my body is shrinking including hand and foot and it’s not just natural asymmetry in my opinion.

I suppose my question being, do i request a second opinion, am i in my right to do so? I don’t want to be rude or pass off anything the drs have done already, but something doesn’t feel right. how would i go about doing this. I’m not sure if I should request to see someone for my breathing as I’m doing less and less to prevent the shortness of breath. Thanks again for any advice.
 

lgelb

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I am not sure how things work in the UK, but I would think you are entitled to the table of findings. Still, the key here is that there was no evidence for anything serious like MND. Note that the EMG does not provide a diagnosis -- it is saying that "mild peripheral nerve hyperexcitability" is a possibility but not the only one. Many of our first-time posters are never diagnosed with anything at all, but find ways to ameliorate their symptoms.

If your GP thinks it warranted I would also think you are entitled to screening with a pulmonologist or pulmonary function tests to determine if you have a clinical breathing deficit, especially post-COVID. If not, that might reassure you that self-care is worth trying. If you are doing physio, that is something to mention as well so it can be noted and tracked.
 

Amandar8585

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Thank you, I’ve done the self referral and will just wait and see how that goes, but I’ll email the neurologist to see if i can have a copy of the report from the physiologist.
 

Amandar8585

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So today I’ve noticed significant loss of muscle in my right deltoid muscle just below the back of the shoulder, it’s like it’s flattened. All my issues so far have been on the left side of my body apart from my constant twitching eye in the right side. This is making me doubt my emg results even further and the diagnosis of a mild peripheral nerve hyperexcitability.
i think it leaves me with no other option than to request a second opinion from a neuromuscular specialist although I’m not sure how to go about it. I feel like I’m forever getting newer signs that confirm to myself that i have this cruel disease, but my drs are oblivious to it. It’s like screaming and nobody can hear me. Nothing has failed, but I continue my daily life with weakness and constant fatigue, and loss of bulk to my muscles.
 

Amandar8585

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Sorry i meant trapezius muscle. Couldn’t edit last post
 

lgelb

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ALS does not present with significant loss of muscle bulk (has this been verified by anyone but you?) and a normal EMG as you have described. As for issues all on one side, anyone can have those just by sleeping or sitting wrong. Eye twitching is generally a sign of stress or dehydration.

If you have post-COVID breathing problems, I would certainly address those as discussed. If/as evident clinically, respiratory impairment might also affect your level of physical activity, which could affect your muscle tone/bulk over time. The latter should be evaluated by the physio that was recommended to you. COVID also can present neurologically, and this would be a matter for your neurologist, but a viral infection is not ALS.

As you can appreciate, those here who actually suffer from ALS or care for those who do find it difficult to understand why someone for whom ALS has been ruled out would still be talking about signs that "confirm to themselves" that they have it.

Accordingly, I am closing this thread.

Best,
Laurie
 
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