Strange sensations

[Peachjoy]

for some time (over a year) I’ve had sensations in my lowest part of my legs (mostly the front).

It feels like I have sunburnt them, although I definitely haven’t. As I sit quietly nearly recovered from covid, I have been giving more thought to these sensations, and I’ve been inside constantly.

These feelings have been around for some considerable time and I’ve not really thought about it (it’s not painful, doesn’t disrupt me or my sleep, just a sort of tingly, glowing sensation, similar to over doing the sunshine)

now I’m wondering if it’s linked to my ET jak2+ (Platelets 650, only on Aspirin 75mgs, 63 years old)

Does anybody else relate to this?

[JP1952]

Yes I know that sensation. I've had it for about 6 years and was part of the horrible sensation of pruritus I had. The itching stopped when I started Ruxolitnib but the sun burnt feeling I had in my lower legs remains. Mine is more intense around my knees, they feel swollen but they're not. It is worse in warm weather or whenever my legs are hot.

[Peachjoy in reply to JP1952]

It’s so strange, isn’t it?

[Pte82]

Peachjoy, you may need to increase magnesium and thiamine. Benfotiamine is a fat soluble form of thiamine that's offers high absorption. Magnesium is needed to activate thiamine and vitamin D. Avtivated thiamine is needed to activate B6. The B vitamins work better together. Research both. Always consult your health care provider before using ant supplement.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

stuttersense.blogspot.com/2...

[Peachjoy in reply to Pte82]

Hi Pte82,

Thank you so much for the advice and directions.

I will start to make some investigations into these possible deficiencies.

I did already know that the B vitamins work best as a coalition. It hadn’t occurred to me that there might be a nutritional deficiency or possible malfunction in absorbency.

Best wishes.

[Pte82]

I understand your recovering from covid. An important thing to keep in mind about thiamine and magnesium is they are critical components for creating ATP, the energy currency of the cells. In this link are the results of a survey that may indicate a potential for higher doses of activated thiamine to overcome fatigue. healthrising.org/blog/2021/...

[Peachjoy in reply to Pte82]

Thank you Pte82

[hunter5582]

There are a variety of reasons one can experience these kinds of sensations. Our friend Pte82 brought up nutritional issues. There are also neurological conditions (e.g. paresthesia) and microvascular issues (e.g. erythromelalgia, erythema) that can cause sensations similar to what you describe.

What you are describing sounds like it could be a microvascular issue. Some of the microvascular issues we experience with MPNs do not precisely fit into specific diagnostic categories but are quire real none-the-less.

Unfortunately, many doctors are not familiar with the different ways that MPNs can manifest. That is why it is so important to consult with a MPN Specialist on these issues. A MPN Specialist can help sort out what is going on and consult on possible solutions.

I would suggest that Pte82 is correct about doing a nutritional analysis. Note that I have measure Magnesium, Vit B/Folate, and Vit D deficiencies. I have titrated supplement doses in consultation with my Integrative Medicine doc.

Hopefully your MPN care team can help you sort this out. Unfortunately, this can escalate into something more painful, which did in fact happen to me. Fortunately an appropriate dose of aspirin was all I needed to resolve the symptom.

All the best.

[Peachjoy in reply to hunter5582]

Thank you Hunter, Information is key, certainly both of you have given me leads to follow up and questions to ask.

The nutritional aspect is interesting, as I was diagnosed with a vitamin D insufficiency (less problematic than deficiency)…all the same…

I have continued with a daily dose of vitamin D3 ever since.

Of course since COVID arrived, the importance of vitamin D has been highlighted again.

Thank you for the information and support

[MPNBlog]

Hi Peachjoy. It sounds like erythromelalgia to me. I was diagnosed by my Heam. It's a microvascular issue as mentioned by Hunter, which is a part and parcel of MPNs. My GP had never heard of it. Extra aspirin for 3 days sorted it out (can go as high as 300mg for 3 days if needed). Hope you find some answers. Best wishes.

[Peachjoy in reply to MPNBlog]

Thank you MPNBlog,

I will certainly enquire about it. Are there any particular ways of diagnosing it?

I’ve been on 75mgs aspirin daily for 17 years, but of course, I’m instructed to never take extra aspirin. So I will wait until I’ve got some supervision.

Thank you and Hunter for highlighting this possibility.

[Wyebird]

No sentions for me sorry we are all so different. It’s worth mentioning to you heamo though..

[Peachjoy in reply to Wyebird]

I will do, thank you

[ElsieR]

The sensation I have had ever since having MPN ET I have always described as being in a draught!! Even in a heatwave!! I just put a rug over my right leg which seems to help, it is not painful, just unpleasant, another one thing to live with, I suppose, I am going to be 84 in 3 weeks and have been under the Haemo for over ten years, I also have COPD and AF (Everything I have has initials) E xx

[Peachjoy in reply to ElsieR]

Hi ElsieR,

Isn’t it strange all these odd sensations we get.

Have a wonderful birthday when it comes along.

[ElsieR in reply to Peachjoy]

Thanks Sweetie, I have already had lots of Birthdays so at the stage when I try to ignore them but will always be greatful to my local hospital who look after me so well E x

[sbs_patient]

I've had strange sensations in my toes: not quite numb, but also not normal. I think the medical term for this is "paresthesia". It's now present the toes of both feet and slowly perceptible as far as the balls of the feet. I agree with Hunter that it may be due to microvascular clots.

[Phantasia]

I find your post very interesting. I am triple negative ET with platelets around the same level as yours. About five months ago I started to experience a burning sensation in my feet, shins and knees. It literally happened overnight. My haemo and GP put it down to peripheral neuropathy from Hydroxyurea. My haemo took me off the medication and for now I am only on aspirin. The sensations have gone from my feet but my shins, knees and now back of upper thighs and tongue continue to tingle. I know it can take some time for chemo induced PN to settle. Your post makes me wonder however if these sensations could be the condition rather than the medication I was on as you're not on Hydroxy.

Did this happen to you over time or was it sudden? The Hydroxy was actually just starting to reduce my platelet levels so it seems odd that I would suddenly get a new, out of the blue ET symptom like that. It's not a symptom I had pre-diagnosis.

I go back to my haemo next month when she wants to start me on Pegasys. I still haven't decided whether I want to start on Pegasys yet. I am worried it will make whatever is going on with me worse or perhaps it will improve my situation. Who knows?

For me the sensations have been uncomfortable and disruptive to sleep. I am coping now because my GP prescribed low dose Mirtazapine which has helped to subdue the burning sensation allowing me to sleep.

[Peachjoy in reply to Phantasia]

Hi Phantasia,

It’s really odd, isn’t it? So far I’ve only been treated with 75mgs aspirin, no HU, yet…

I do think these symptoms/sensations are related to our condition.

It’s hard to answer your question as to how long I’ve had it or when it started. I think that’s because it’s been a slow, gradual development. It doesn’t hurt, or disturb my sleep, so I’ve sort of just got used to it. I’ve probably had it at least a couple of years. It certainly wasn’t a very sudden thing…

I think I’ve become a lot more aware of being alert to symptoms since the sudden change of attitude and attention from the Haematologists.

Certainly a newish, gradual development is a tingle (glowing feeling) in my hands.

Let us know how you get on?