Leg fasciculations (twitches) anyone?

[Alexbits]

Hi there,

I'm Alex, 34 y/o and it looks like I have an ET, with platelets 600-700, JAK2+ (17% burden), other blood parameters seem to be in the normal range.

I also suffer from facial pain, tingling burning sensation in my cheeks, forehead, back of the head and also twiching (fasciculations) in my legs (calves). Electrocardiography showed some damage to nerves....Have an appointment for MRI....

I was on aspirin, now on Plavix. This fixed only migraines and scotomas which I had previously.

Does anybody had the experience with leg twitches/fasciculations/neuropathy?

Thanks

[Stevesmum42]

Hi Alex. Sorry can't help you on that question . It sounds like restless legs, which I also suffer from. But really something to be looked into by your Dr.

Hope you find some relief soon.

Best wishes Sandy.

[Alexbits in reply to Stevesmum42]

Thank you Sandy. Nope, this is not a restless leg, something else. Waiting, for spine MRI results.

[ihavegotet]

Alex

I get really strange twitching not only in my legs but sometimes in my back or feet. I am ET jak 2 on Pegasys and all counts are in normal range. It started when my platelets hit 1.4 million and i thought they would disappear when i went on peg but i still get them. Was gonna ask my doc when i see her in December.

[Alexbits in reply to ihavegotet]

Thank you for your reply. How often you get the twitches? I have them almost constantly when awake and not walking.

[ihavegotet in reply to Alexbits]

It is a few times a week. It was way more often several times a day when my platelets were 1.4 million. All normal now but still get the flutterimg. What a strange disease! I cant tell if it is vascular or muscular even, just a flutterimg.

[VLHB]

Hello Alex - I too have leg twitches - both when I'm awake and asleep at night. I don't get them all the time but they are annoying, particularly when I'm trying to sleep. I have spoken to my haemotologist about them and we have agreed that I am more prone to them when my iron levels are extremely low. If I eat foods with known sources of iron they do diminish.

Hope this helps

Vanessa

[Alexbits in reply to VLHB]

Thanks Vanessa. My iron seems to be OK

[Jawas]

Hi Alexbits,

Yep to leg spasms, facial numbness in left check sometimes and nerve problems (Seeing the neurologist in the new year).

Glad to see they are monitoring your allele %.

Try speaking to your Haem about ET, B vitamins and nerve damage.

I have had some success with marmite!

Gabapentin was good but sent me to sleep.

If you would like further info just message me.

Good luck

Jawas

[Alexbits in reply to Jawas]

Thanks for sharing details Jawas.

They don't monitor my allele %, I'm doing this by myself. I had to travel abroad (I live in Ukraine) to do the test.

I had a visit to another neurologist who said that my fasciculations can be a result of intoxication provoked by liver which is not functioning properly. Not sure what to think about this, I plan to try some detoxication procedures and see if it helps.

[m4d4lin]

I got those for few moths now. They started in the calves and now I get them in other muscles parts also. I am having ET, currently on treatment with Pegasys.

Do you still have them?

[Alexbits in reply to m4d4lin]

Yes, unfortunately Started in calves and/or in face (I'm not sure where first). Then progressed to feet, this also happens in other muscles, almost anywhere in my body. It's very annoying and even painful. At the moment I'm on aspiring only.

[BShankly]

Hi Alexbits. I hope this message finds you in good health.

I was reading your post about muscle twitches. I also have muscle twitches, they started in my eyelid, then in my legs and occasionally around my body.

I get them when I'm lying in bed, mainly in the morning when I wake up, but I also feel them at night.

They ease off during the day when I apply Magnesium Oil, but they are constantly there.

You described your twitches as 'Leg fasciculations', rather than Restless Leg Syndrome, which is how I would describe my twitches.

Can I ask if you still have them? Or have you found medication or supplements to improve them?

Thanks for your time.

BShankly (UK)

[Alexbits in reply to BShankly]

Hi Bshankly! Thank you for your message. Yes, I still have them all the time, mostly in rest, it's easier to handle them when I'm moving. Unfortunately, I didn't find a remedy or cause for this yet. I've visited numerous neurologists. In case, I'll find anything, I'll post updates here.

[BShankly in reply to Alexbits]

Thanks dude. Really appreciate you taking the time to get back to me on this. And so quickly, too.

And, (although not great for you) I'm also reassured you've had these twitches for sometime and they haven't developed into anything serious.

I've had them for 3-4 weeks, they came out of nowhere but they also happened at the sometime I was diagnosed with a Underactive Thyroid... so I'm hoping the meds and improved mineral and vitamin levels will have some impact on them, along with positive impacts to fatigue, brain fog, memory loss etc.

Again. Thanks for your support.

(Let me know if there's any improvement.)

Regards

B.

[Alexbits in reply to BShankly]

No problem. I'm happy to help. From what I read, thyroid issue can be a reason for muscle twitches. You should also check your B12 and electrolytes level if you haven't already.

[BShankly in reply to Alexbits]

Thanks, both my B12 and Potassium levels are low, but just 'in range' so my GP said they were ok... from reading lots of other people's stories and symptoms on the brilliant Thyroid UK forum I understand they're not fine.

So I'm starting to educate myself on how nutrition plays a vital role in managing the condition.

Stay safe.

B.

[littleluigi]

Old post but WOW, I have the same range of platelets, the same allele burden, same mutation, and also i have those twitches mostly in the calves

[Alexbits in reply to littleluigi]

Hi, yes my HCT and HGB were bit raised too (5.5 RBC, 155-160 HGB), lower than yours, but still. How you found this post? Because I followed you probably

[littleluigi in reply to Alexbits]

Yes i looked at your posts 🙂

[Alexbits in reply to littleluigi]

Do you have these muscle twitches in your calves constantly or sometimes?

[littleluigi in reply to Alexbits]

Constantly, they are really little twitches. If i don't think about them i don't feel it. If i look at my calfs you can always see them

[Alexbits in reply to littleluigi]

I see. Thanks for sharing. Did you get them after or before or during your blood problem diagnosis?

[littleluigi in reply to Alexbits]

2 year before diagnosis. But my platelets were also elevated then. 650 in 2018. Did you get them before or after?

[Alexbits in reply to littleluigi]

It started in my face as I understand it now, small twitching under my jaw. But who knows maybe I just not noticed calf twitches at that time. I had a root canal procedure in one of my teeth and it caused a lot of painful facial nerve problems. At that time I was trying to find the cause of this pain which through the blood tests led me to the diagnosis of MPN. I noticed twitches in my calves when I was in the process of diagnosing my blood issue 2.5 years ago. My platelets were elevated 450-640 years before this. After 6 months it spread to my feet and other parts of body and it's quite painful. No luck with neurologists, hematologists say it's unrelated to MPN. I'm kinda stuck with it.

[Lions3 in reply to Alexbits]

I’ve had calf/leg twitches for years. Used to get it only after a long walk, but now get more regularly when I’m at rest (either sitting or at night in bed). I was diagnosed with ET in Jan this year, but have probably had it for about 10 years according to my bloods. My platelets currently low 600s & on aspirin & was also recently diagnosed with b12 deficiency so not sure what’s causing it

[Alexbits in reply to Lions3]

B12 deficiency can cause this.

[Lions3 in reply to Alexbits]

Yes, had my last b12 injection in June so getting my active b12 bloods repeated tomorrow (last time they only did serum b12)

[BeHealthy1986]

Hi Alex, I do have muscle twitches on my arms, legs and eyes. It lasts for a couple of seconds and then gone. It happens very randomly but not frequently. I also wonder if it is ET related. I can ask in my next appointment. I am 34 and have ET.

[Alexbits in reply to BeHealthy1986]

Hi, it's pretty normal to get the twitches for a couple of seconds. If they don't stay for days, weeks, months it's OK.

[Rosanna1951]

Been Jak2 positive for 10 years. Platelets around 600 take hydroxyurea 10 x 500gr a week. I experience restless legs at night and sweats. I ‘ve increased my fluid intake which helps or may be its coincidence?