Is ALS a possibility?

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New member
Aug 11, 2022
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Hi all, I have read the sticky notes/posts before posting this and hope my post is ok.
First a bit of background. I am a 30 year old female, only current known health issue is B12 deficiency which I receive 3 monthly injections for by my doctor (I mention this as I know B12 can cause similar symptoms but my gp won’t retest my b12 as he said it won’t be causing these symptoms as I’m on the regular injection and have been for years).

All was ok health wise until 5 weeks ago, I noticed tingling in my toes on right foot. Caused discomfort and annoying but no real pain or worries so just brushed it aside as one of those things that will pass. 4 weeks ago lower back pain came (I have this on and off and have done for years but it flared up again). 3 weeks ago I then had a major build up of pressure in my head which has made me feel seriously ill. During this time I have developed all over body twitches and spasms, started in my right leg but then seems to have suddenly spread all over. It has been painless until today where my arms literally feel like I’ve been lifting weights, I presume because the muscles are tired from the constant twitching. Some are just like quivering and visible to see but no muscle jerking and that I don’t even feel until I see, some little twitches that I feel a lot and some strong enough to make my leg, arm or back/truck jerk massively. I reported a heavy/weak feeling my right side (arm and leg) that came on around the same time. Things feel unusually heavy to lift etc. I am able to still do everything but it feels as though a lot of effort needs put in especially with R side. R side of tongue only twitching. I can do things but feel ‘fumbly’. I can hold my phone but keep almost dropping it as it gets ‘heavy’ and I have to readjust grip. Jaw has become painful/tight. Skin feels tight especially on R arm and leg. Blood pressure has been much more elevated than my usual BP last three checks, but just into what they class as high. Have been put on a list for home BP monitor as they want 1-2 weeks of daily readings.

Treatment/tests so far:
  • physio appt, strength, posture and reflex tests. All normal other than noted very mild spinal scoliosis but told not enough to cause any of these symptoms and advised to see GP for overall check
  • Face to face GP appt - checked for ear infection but no evidence, given antibiotics anyway as gp felt symptoms were caused by some kind of infection and took bloods. All bloods came back normal and antibiotics didn’t help. Quick reflex/strength test gp said was normal and couldn’t see or feel any weakness. Didn’t see me walk or anything but done push/pull tests
  • Follow up phone GP appt - GP said possibly an inner ear infection past the eardrum that had caused labrynthitis but had no idea what could be causing twitches and weakness but suggested it might just be stemming from possible labrynthitis
  • Eye test - all ok
  • Last weekend ended up in A&E as felt as if my head was going to explode with pressure (I’m aware head pressure isn’t linked with ALS, just mentioning it as this is what prompted my gp and hospital visits initially and is what seemed to ‘trigger’ the twitching. They were concerned about my tingling in toes, weakness (although they also couldn’t feel any visible weakness and reflexes again were normal) so they ordered an emergency CT scan which came back clear. They referred me back to my GP with a letter suggesting a neurology referral to be done and an MRI if my gp felt an mri would help.
  • GP appt re referral. Gp tested reflexes again and said they were normal. Didn’t look at my arms or legs to check for any atrophy but did the push pull tests etc and all normal. He agreed that the muscle twitches need investigated and prescribed me propranolol to see if that helps in the meantime (it hasn’t so far but has only been a few days). Waiting list is very long so have used my private medical insurance and have an appt at the end of September. Still longer than I would like but he’s the only neurologist in my area who accepts my healthcare referral scheme. He did say he feels it’s likely to be some unusual reaction to whatever caused my intense head pressure. The hospital mentioned the gp should investigate nerve issues via the neuro such as ms (which is how I ended up here through the rabbit hole) but the gp said he doesn’t think ms is likely at this point but didn’t say why.

Pain and pressure in head has gone, back pain is still here but intermittent and less severe. Twitches are really bad, all over and feel almost constant. Walking feels like such an effort and off balance. I don’t know how all push pull tests don’t show weakness as my right side feels so heavy and hard to move. Feel like I am tripping on my words, finding them hard to find (with occasional slurring but no one else has noticed this even when asked). I’m hoping it’s due to my B12 or possibly linked with my back pain but dr doesn’t seem to think so. I’m also going to get my thyroid tested in the meantime as my Mother and grandma both have under active thyroids and I know that can be similar symptoms. Just a note that I had no stress or anxiety at the time of any of this (until now of course which I know won’t be helping but these symptoms definitely started and continued without those 2 triggers). No ear infection was confirmed and labrynthitis was admittedly by the dr just a possibility.

I guess my question is that as my muscle twitching started localised then spread body wide (and is in half of my tongue) and is accompanied by weakness (although I appreciate this is perceived by myself and not the drs) and seems to be getting worse alongside fumbling around and things feeling heavy could this be something that’s in the mix of possibilities? I appreciate it would be rare at my age but also aware it can happen. Sometimes the twitching is so severe that I feel like it’s happening inside my stomach and abdomen, similar to feeling little baby kicks (I am definitely not pregnant!). Does als make you twitch even like that? I have had covid back in February for the second time but I wasn’t very ill with it and had none of these symptoms at all until 5 weeks ago. My arms are shaking sometimes when at rest or tensed, like a tremor. Would it be possible for ALS to progress so fast from nothing (from what I noticed or remember) to this in 5-6 weeks?

I appreciate that you are not able to give diagnosis and aren’t medical professionals and understand that even when it is als rarely do people have the exact same symptom progression etc. I’m just looking for some level headed experience to draw on.

Thank you all so much for sharing your experiences and giving us your time. I send all my love and thoughts to you all
You sure have something going on.
If you read the sticky however, what you would notice is that ALS never present with pain and pressure in the head.
It also doesn't present as things 'feeling heavy' and doctors finding no clinical weakness.

So the answer is no, ALS would not progress this fast (although you have no progression, you still have no clinical weakness!).

Keep working with your doctors. Twitching means nothing, so trying to figure ALS by the type of twitching is pointless. I think we talk about that in the sticky post too.

I think you should keep talking to your doctor as they are the ones who will figure this, Dr google and forums truly won't.
All the very best.
Totally agree this is not an ALS picture, but would make sure you have had an ECG and a Lyme test if it is present in your area.

All the best.
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