Progressive symptoms since I last posted

[capricorn86]

Hi all,

I posted here back in Nov 2024 with symptoms mainly of dizziness, weakness right lower leg below knees. See below.

C

Thread 'New muscle symptoms onset with dizziness'

Sep 29, 2024

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...

• capricorn86
• Replies: 21
• Forum: Could this be ALS?

I had an MRI full spine, NCS, EMG done during Oct - Nov 2024. Rheumatology were not interested in me based on normal bloods. So all was aparently normal, so I left the forum thinking this will go away.

It's now mid April 2025, 5 months since the last tests, 8-9 months since symptom onset (14 Aug 2024). I had a sleep study done in Feb but unremarkable. Sadly, I went back to my neurologist last Thu.

My right lower leg is alot wobblier then the left now. If I stand on my right leg I loose my balance easily. The muscles feel weak and strained. The muscles feel stiff. This feeling has been getting worse since I last posted, steadily. My left leg feels a bit the same but much less. I feel clumsy on my legs, imbalanced. I don't feel strong on my legs.

In Oct 2024 the ear doctor said I had vestibular dysfunction. My head dizziness/heavy head has steadily been getting worse too. Initially I thought my leg symptoms were connected to the vestibular but I am sure they aren't now. Sometimes my dizziness improves with exercise but my legs feel the same all the time. I didn't have these feelings so strong in Oct/Nov in my legs last year so they've steadily worsened.

If I walk or try do simple exercises like 1 leg stand on my right leg, it feels more stiff, wobbly, weak and achy. Almost like that leg doesn't want to hold my weight on standing. There is also a constant ache in my muscles in my right lower leg, a kind of fatigue, which does not recover in my right leg ever. That same right calf twitches intermittently throughout the day but alot more after exertion. Standing and walking is becoming uncomfortable/scary but I don't have "failiure" - I just feel like I'm slowly heading there though. Like my legs are on a path to giving way/become paralyzed with no strength. A constant reminder that something is seriously wrong with my body.

Last week, my neurologist instructed a full MRI brain and spine again, this time with contrast. The form said "progressive ataxia". He also instructed a repeat if the NCS, EMG and some other test of spine where he said they test if there is a delay of brain signals to spine - not sure what this test is called. Planning to get these done early end of April - early May

You all said muscle failure has to be present. I appreciate this. But I've been reading stories of others who experience vestibular dysfunction and legs feeling weak and more achy then usual who eventually do get an MND diagnosis. My EMG in Nov 2024 was normal, but my symptoms were also much less back then. Hoping to hear others who had similar symptoms.

I'll also add that a random iron blood test in Feb saw my ferretin at 25 (extremely low for a man, I'm 39) so I underwent a private endoscopy/colonoscopy for possible bleeds in Mar - which found nothing other then a bit of inflammation. So currently on 16mg iron supplements.

 

[ShiftKicker]

It sounds like your neuro is providing appropriate care and continuing to search for reasons for your symptoms. The upcoming tests will hopefully provide more information to help figure things out. There are multiple conditions that cause ataxia, which is a different movement issue than the type that results from ALS. Having to wait for answers is hugely stressful, I sympathize. Uncertainty is hard to confront and I am hoping your doctor can provide you with more answers soon.

 

[capricorn86]

So the tests booked for me on 3rd May 2025 are

EMG, CMCT, SSEP

Is CMCT the same aa a NCS?

Never heard of SSEP - anyone familiar with that?

 

[Nikki J]

SSEP is somatosensory evoked potentials looking at yoursensory nerves so not something pals usually have.

The cmct isn’t the same as ncs though I think it uses information from it I think it also incluses tms. It seems like you are having a very thorough workup

 

[capricorn86]

Thanks Nikki. Yes I remember him saying TMS in the consultation. The testing looks very technical. My legs feel weak and wobbly and achy from the knees down, this "feeling" worsening as the months go on. But I have no failure so appreciate I could be barking up the wrong tree here, again. I will post results and feedback later.

 

[lgelb]

Just because the dizziness and leg problems do not precisely overlap does not mean that they are unrelated. There are meds and physiotherapies for vestibular dysfunction that idk if you've tried. And 16mg of daily iron (2x your daily requirement if you eat meat) is unlikely to correct an ongoing iron deficiency, the cause of which should be investigated through several different labs that I don't know if you had or not. Low iron also is a known cause of dizziness and fatigue. Etc.

Anyway, sounds like you are going to have more info as to the extent of any neuromuscular compromise soon. If those tests are not revealing, I would make sure you run through the options above.

 

[capricorn86]

Thanks Igelb. I had an endoscopy, colonoscopy and a camera capsule swallow (to look at intestines that scopes can't see) a month back to rule out a possible bleed. Nothing was found. I upped to 25mg recently (active iron supplements) but only take 25mg every few days, 16mg daily consistently. Repeating iron studies in 2 weeks to review my ferretin etc. I'm iron deficient but not anemic. Red blood/hemoglobkn was all very good. Gastro said to try a low iron dose for longer to avoid stomach issues/side effects. I'll know in a few weeks whether I need to up the dose. What other labs do you refer to? All other bloodwork is within range.

I also have been doing vestibular physio since October/November last year with no improvements to my symptoms. This is why I asked my GP to check my iron randomly, and also prompted to return to the Neuro etc. I wake up every day with stiff shins and calves, as soon as I begin to walk on them, they begin to tire so quickly. Right shin/calf feels more stressed to hold up my weight. This feeling progressively worsening, slowly, since last year.

 

[lgelb]

There can be other reasons for low iron besides GI bleeds. Non-anemic iron deficiency is actually pretty common, but less so for guys your age.

Without seeing your panels, I don't know what's been ruled out, but would just want to be sure you were worked up. This article lays out some of the values that should be checked and possible causes that should be considered.

Non-anaemic iron deficiency - PMC

Iron deficiency without anaemia is common. Patients may present with unexplained, non-specific symptoms. Iron studies will usually show a low ferritin and low transferrin saturation with a normal haemoglobin concentration. The cause of the iron ...

pmc.ncbi.nlm.nih.gov

Iron deficiency over time can disrupt your sleep and contribute to movement disorders, as well as stiff/achy muscles, so hopefully as your iron normalizes, your other issues will as well.

 

[capricorn86]

So worth noting my iron/ferretin was normal in Aug 2024 (when my leg symptoms all started and when first posted). Iron was 18, ferretin was 90. The emg was also normal last Nov

However by Feb 2025, symptoms were still ongoing/worsening, so I asked for my iron to be re-checked. Ferretin dropped to 31 in Feb 2025, repeat few weeks later, it dropped further to 25. I'm actually now repeating full iron studies this week. As well as all the EMG, NCS etc.

Deep inside me I am trying to tell myself my legs are connected to my vestibular dizziness, but they feel tired as the days go on, my GP said vestibular issues should not cause true muscle weakness/fatigue.

 

[lgelb]

Sometimes you have two things going on, and sometimes one affects the other.

You could have a mild leg thing that iron deficiency worsened, etc.

Though dizziness does not cause weakness per se, it can sap energy.