New muscle symptoms onset with dizziness

[capricorn86]

Hi All,

I have recently joined this forum to seek your opinions as like most of you, we tend to google and think worst case. I have also been very terrified and anxious for a couple of months in light of my symptoms. I live in the UK in South London.

On 14-Aug I woke up feeling tightness/sense of weakness in my lower right leg. I'd been flying/travelling the day before so went to my local a&e to rule out DVT - they did and no sign off dvt, sent me home. Since then my leg weakness, particularly on the right has steadily progressed. However, when I say "weakness" it is more of a wobbly/unsteady feeling as I walk or stand. I have been twitching on the same leg for about a month too. On shin, calf, thigh, ankle etc. The twitch is often a single contraction that comes and goes every few seconds, or it can come and go every 5 mins. Sometimes I feel the same on my left foot/leg but not as much as right. Is my description of twitching consistent with what you "feel" with als? Sometimes the twitch is very weak, sometimes I feel them very strong especially on shin/side of lower leg. As I type right now, it's only 1 twitch/pull at a time though. I don't feel these at night, i feel they start when I awake onwards.

Going back to this weakness/wobbly feeling, around about a week after 14-Aug I started to feel dizzy, like a swaying motion associated kind of dizziness (I had a couple of vertigo related spins that lasted 2 seconds on 09-Aug and 03-Sep) and this dizziness is with me all the time.

On 12-Sep I booked in with a neurologist where I passed all the neuro checks (strength/eye gaze etc) and she booked me an mri head / spine for 16-Sep which all came back normal apart from an incidental cyst find on brain and some wear and tear on my spine associated with my age and so I was discharged. I attach both reports, I don't understand the spine discrepencies and I wasn't explained either, all negligible according to neurologist. Please see attached and let me know if you understand.

I have a neuro ontologist appointment for 03-Sep to look into the dizziness I am experiencing.

What I would also like to seek your guys experience/opinions on is this weakness I describe above. I feel wobbly/weak as I walk/stand, almost like my legs cant take my body weight. And I have these weird muscle twitches at rest. But I can stand on my toes and heels and I can walk although with this strange feeling/perception of weakness and wobblyness. Sometimes my legs feel heavy too. My neurologist said there is something called functional neurological disorder which is a trigger to stress etc but I definetely feel something physiological going on in my legs.

When I explained to GP my ongoing symptoms, he booked me some bloods for tomorrow (30-Sep) to check thyroid, calcium, magnesium, vitamin b/d etc. And if all that comes normal he said he will send me for nerve conduction studies..

 

[lgelb]

FND is a real thing and can be very troublesome. It's good that you're getting labs and following up on the dizziness since that can cause falls, and we all need to avoid those.

I see nothing in the MRI reports to worry about, nor any reason to believe from your description that you have an MND. Keep in mind some people are more sensitive to minor spine issues than others, and one twitch/weird feeling tends to feed on another, so you could also ask your GP to refer you to a physio if everything else looks good.

Of course, you will also want to look closely at diet, hydration, stretching, sleep, stress...to be your healthiest for whatever is going on. But sometimes there is nothing to do except look for things that make you feel better. If you get to this point, remember, it's a feature, not a bug. All this can be a wakeup call without being an alarm.

 

[capricorn86]

Thank you Igelb for your kind words and message of support.

How does leg weakness manifest in als from your experience, is it real functional weakness where the leg or foot, for e.g., can not be lifted? Do wobbly leg sensations not manifest in ALS folk in the initial stages and is this not a usual complaint initially?

I forced myself to take my wife and 2 young kids out for the morning, and I felt wobbly/weak in the shins all day it was a nightmare. And it's a vicious circle that gets me worked up more and more. As I rest now back at home with my legs up, I feel the twitching now going on in my right leg which is the one that feels weaker then the left. I also keep getting that motion feeling in my legs, kind of the one when you get a sudddn burst of adrenaline when you panic, and then your legs feel more sensitive. Except I am not panicking or feel adrenaline (HR us 72, bp 116/70) but that weird sensitive feeling is almost always there in my legs!

 

[ShiftKicker]

Hello-

If you could have a read through here, Read Before Posting, it explains why things like dizziness, symptoms that come and go and sensory issues point away from ALS. It also explains how clinical weakness (the hallmark sign of ALS) is not the same as feeling weak or wobbly. I am sure you will find it reassuring with regards to ALS/MND.

All the best

 

[capricorn86]

Thanks shiftkicker. I tried to keep my dizziness seperate as I think that is more inner ear related and I am seeking vestibular help for that.

My legs though are are in another world. Today I did 1 squat and both legs felt like jelly/wobbly, and that uneasiness in my legs continues all day long. It feels very uncomfortable standing on my legs. Both legs twitch too. I can't imagine what they would feel like after even more strenuous exercising but I am too scared too try at the mo. I have read alot of peoples experiences with als where they found themselves getting weird symptoms like muscle fatigue during exercising or after, for months, before notice more functional issues later like foot drops? This is what my concern is.... what do you think? I have never felt my legs like this before.

My gp did a creatinine kinese test and it was 158 ul which I think is normal. Magnesium/liver/kidney/vitamin d all normal.

I will also add that sometimes I feel like the muscles in my legs locking up, or maybe about to enter into a cramp and then light twitching/buzzing/tremoring feeling in that same area, no pain

 

[ShiftKicker]

If you could make sure to read the link provided above carefully, as it explains why sensory issues point elsewhere. You can not isolate each symptom or cherry pick symptoms to fit a particular condition and dismiss other symptoms. Doctors treat the body as a whole and will look at things more holistically in order to provide a proper diagnosis. Keep working with your doctor to track down the cause of your issues, but this is not how ALS really starts.

Take care

 

[capricorn86]

Hi guys - since posting my right calf last 2 weeks in particular has been slowly feeling tight/stiff and when I walk it feels like my right leg is struggling more then the left?

Does progressive weakness play like this in your experiences? I am scared I am progressing and walking is very strange at the moment with my calves feeling super tight last 2 weeks, without even any work outs. I feel like my right leg is also bit heavy and my right foot doesnt raise naturally as high as left when walking

 

[Nikki J]

You are asking about gait issues again. It hasn’t and doesn’t sound like our experience. As previously advised please work with your doctors Please let us know AFTER you have results from whatever plan they have.

 

[capricorn86]

Saw my neurologist today (2nd opinion)

He said my symptoms don't look like FND and nor does he see any muscle issues on examination/physical review as such but he booked me for an EMG / NCS to further rule out. Because I feel like my legs are constantly recovering from something. The report says slight dull right leg reflex vs left, any idea what that means? He also said my right foot achilles seems stiff and I noticed I couldn't raise right foot much recently during walking. Attached snippet.

 

[lgelb]

All this looks/sounds very reassuring as to any serious condition.
These are not super-concerning findings as he noted, but they are leading him to order the EMG to be sure.
It is not unusual for leg reflexes to be slightly different on the two sides, especially given the minor spine problems and hypothyroidism.

Do stop back by after the EMG, but it really seems as if you're in the wrong place here.

 

[capricorn86]

Thank you Igelb. I will post the final results back here and hopefully it can be helpful to others on a similar path who feel lost for answers.

 

[capricorn86]

Hi guys, I've been told my emg/ncs on 31st Oct is only a 20 min session. Is this even realistic from your experiences? It sounds like he is only going to poke 1 area (assuming my leg(s)!? as they are my main complaints) - any advice going into this on what to ask for/expect?

 

[Nikki J]

It isn’t necessary to do every muscle. ALS is a disease of widespread acute and chronic denervation. You are complaining about your legs so it would be reasonable to test one. It is common when screening for ALS to do one side.

What to expect? Likely an ncs of one muscle at least ( shocks) and then the needles for the emg. Especially if it isn’t your doctor doing it they might not give results. If they do not it doesn’t mean anything bad. It would just be the protocol of that place

 

[capricorn86]

Thank you Nikki for the info. Much appreciated. A neurophysiologist is conducting my tests which is different to my consulting neurologist. Will post everything next week.

Can I check with you in regards to your als twitching in limbs during your early/onset days/months? Was the twitching/spasm fast and constant, or would they occur for a few secs and disappear for hours then randomly appear here and there intermittently, or were they more constant? Was the twitching like a hard/agressive pull (not cramping) or more of a soft visible muscle tremor/movement?

I am 2 months past my initial symptoms on right leg. That same leg has been twitching in the calf/shin side for over a month. But the twitches come and go. Might be 1 or 2 quick fast muscle twitch and then nothing for an hour, then random twitch again which then could feel like an agressive/fast muscle flutter/pull which freaks me out (no cramping). Sometimes this muscle twitch I desribe gives me a feeling of super tightness in my shin or calf which disappears after the twitch goes. Does this sound familiar?The soft/delicate twitch does not bother me so much. My twitches are not constant like some describe here.

 

[Nikki J]

You can not tell anything by twitching. I will say I had very specific localized weakness first that absolutely correlated with emg findings and only had localized twitching later Riluzole stopped it which happens occasionally