ferritin level and symptom question

[Corolla1]

I first posted a few months ago and based upon replies there were mixed feelings on whether my symptoms were truly RLS. Main complaints were a current/restless sensation in my legs and some twitching, more at night but also in the daytime if I was sitting for long. The symptom that was not fitting well is it did not wake me up at night and although moving always felt better it wasn’t always a must. In addition I was having lower leg heaviness, no weakness. Also had some lower back issues so unsure if any of that factored in. Over the last few weeks I also started experiencing an internal vibration in my legs , most noticeably in my upper leg/groin area. I got some labs done and nothing stood out with exception of my ferritin levels still remain low. Previously it was 51 and I have been taking iron supplements for about 2 months and it is now 64. Obviously going to continue taking it with the hopes it comes up more and some of these symptoms improve. My questions are should I have seen a bigger increase in my ferritin in 2 months and does anyone else ever experience this internal vibration feeling? Of course my mind starts thinking bad things with these odd symptoms. I am seeing a 2nd neuro dr in June who is actually on the Director of RLS Syndrome QCC in Pittsburgh Pa so hopefully she can shed some light on things. As always thanks for any feedback.

[ChrisColumbus]

It can take several months to raise ferritin levels significantly by oral supplementation (infusions are much quicker). Others may have more ideas on this.

I note that you've had tests which haven't thrown up anything. Hopefully the tests, your neurologist, or perhaps others on here, can help to rule out the various other possible neurological disorders that can cause internal vibration symptoms - including Parkinson’s, multiple sclerosis and essential tremor. I hope that you get some better feedback.

[Corolla1 in reply to ChrisColumbus]

Thanks Chris…. Did have MRI & EMG that was normal.

[ChrisColumbus in reply to Corolla1]

👍🏻- it's good to eliminate things!

[SueJohnson]

It can several months to raise your ferritin as Chris said. That is why they say to wait 3 months before being tested again.

Internal vibrations are when only you can feel them and nothing appears on the outside. I have them and I hate them but this is something entirely different from RLS and there isn't really anything you can do about it unless they are caused by Parkinson's or MS and I don't know much about that. But let's hope that is not the case.

That's great that you are seeing the Director of RLS Syndrome Quality Care Center in Pittsburgh Pa. You couldn't ask for a better one than that. Will be very interested in finding out what she says.

[Corolla1]

Thank you Sue! I will update after my appointment!

[Joolsg]

Raising ferritin levels above 100ųg via pills can take years in some cases. That's why iv iron infusions are used to raise levels faster.There are many possible causes of your symptoms and the neurologist you are seeing will hopefully do all the necessary tests.

There are some diseases that she may not cover though. For example, low thyroid levels ( hypothyroidism) can cause some strange tremor symptoms, so can vitamin B12 deficiency.

Hopefully blood tests will show up whether these are the issue.

I do experience internal tremor, pins & needles, numbness and fasculations, but that's because I also have MS. If you've had an MRI and it came back normal, you don't have MS.

I do hope you can find out what is causing the strange leg sensations.

[Corolla1 in reply to Joolsg]

Per labs we have ruled out thyroid, B12, potassium and magnesium levels. My sodium was normal/borderline low….135, but that’s it. It’s all very odd. Anxiety, which I have over all of this could also be a factor.

[Joolsg in reply to Corolla1]

Anxiety worsens most neurological diseases. But it's hard not to have anxiety. I do hope you find the answer.The only other thing I can think of is Long Covid, which does cause neurological symptoms like yours.

[DicCarlson]

You might try adding the probiotic LP299v which is shown to increase iron absorption.

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