Increased concern

[NICOLEL1985]

I’m a 39 year old female. With 6 children from 19 to 1 and just found out I am pregnant which has been a shock. However also adding to my concern; firstly, whoever reads this thank you for taking the time to read this. I know it must be frustrating for sufferers and care givers to read posts from people like me. I have read the pinned post several times over the past few months to try to give myself some reassurance. I would also like to say I honour everyone here who come to support people suffering or care giving.
Previous thread is here.

Basically my symptoms are as follows,

January. Confirmed atrophy in left thenar (confirmed) sent for nerve conduction which was normal. Slight cramping when in use like peeling potatoes etc.. twitches on palm and in between thumb and finger at top of hand. dr said still have reasonable amount of strength with pincer grip. On and off
Visible falsucations in my left foot daily started February on the inside of left foot and base of foot: also left calf falsucations same place and down the front of my shin. Nerve conduction normal. Referral sent to neurologist. In April started getting a tight feeling around throat could eat and drink as normal. Twitching side of neck. Twitching inside and outside of lip, and chin. Strange sensation in tongue like a pulling from underneath electric shock like feelings in roof of mouth, sides top and under tongue.

Saw neurologist in may. Did very basic tests looked at my arms legs got me to do some basic exercises told him and showed videos twitching. Did some reflex’s on my foot and hand. Noticed the atrophy said “probably carpel tunnel” offered me a CK blood test which came back 84. Said everyone gets muscle twitches it’s normal. Mine have not gone away always in the same muscles. He’s discharged me said no further action. Been back to the drs as I feel atrophy worsening. Awaiting another NCS. No one will give me an EMG tried to pay private even then I have to get a letter off a professional.
Considering paying to see a private neurologist now.

My mouth still feels like I have electric shocks mostly under my tongue but also the sides. When I swallow food it feels dry. I can swollen but the after eating feels like there is a bit still stuck in my throat for a while after eating so I keeping drinking to try get it away. Also my voice when I speak it goes a bit croaky and it’s like I am always clearing my throat. Last night I had twitching under my chin.

The twitches I get are like 3-4 little twitches and they stop and come back a few minutes later. This is the same all over in the places I get twitching. It happens daily, same places same muscles.

Left leg where I get twitching doesn’t feel as strong to stand on one foot. I can go on tip toes and heels.

I am aware “usually” atrophy comes after weakness. At the minute this twitching in my face and strange sensations of throat and in mouth are really bothering me. My drs won’t listen and I am at a loss, does this sound like als, do people think this warrantable to pay for a neurologist for further assessment is emg required. This has plagued me for months now I’m so so worried and feel like my concerns and symptoms are being ignored.

Thanks for reading this I hope it hasn’t upset or offended anyone. I’m just desperate for answers now. I have 6 children soon to be 7 and I just want to be here for them.

 

[lgelb]

Congratulations on your pregnancy, Nicole.

None of this sounds like ALS. If anything, it seems more systemic. I would really try to work with a good GP on this, focusing on baseline labs and testable interventions that could help you feel better, from stretching in the morning to meditation to hydration (not just water, but electrolytes) sleep (which I'm sure is elusive with six kids). As you know, iron and B vitamin (including the need for folate) deficiencies have been associated with pregnancy, so medically-supervised supplementation is something to consider. Keeping your skin moist with unscented lotions can help as well.

The GP might also suggest something like therapeutic massage or a bodywork class.

You can't feel atrophy worsening, and if it's not constraining your activities, it's hard to worry about. You've had repeated normal NCS and the neurologist doesn't see the need for an EMG, which from your description, I can understand -- there seemingly is no motor deficit to investigate.

In short, there seems no need for concern that you won't be there for your kids, but clearly you are in distress. Fortunately, you're in the wrong place here.

 

[NICOLEL1985]

Thank you for taking your time to respond to me it’s greatly appreciated. I will look into your suggestions. I will try and re visit the gp. I know I have an iron deficiency. It just feels like I am not being listened too. Hopefully I can get to the bottom of my issues. The twitching in my chin and this pulling sensation under my tongue is so bothersome it’s hard not too worry along with looking at the atrophy in my hand. Thanks again.