PV and numbness in feet

[souplover]

Hi everyone,

I'm wondering whether others who have PV (or maybe ET too) are experiencing permanent numbness in their feet?

[Pte82]

Deficiency of B1 (Thiamine)can cause your symptoms. Do a search for thiamine foot numbness. A magnesium deficiency can cause a thiamine deficiency so use a well absorbed magnesium in the amount appropriate for your weight with it. B1 works together with the other B Complex. Benfotiamine is a fat soluble thiamine that has a higher absorption than water soluble thiamine. However it should be used in tandem with water soluble thiamine Dr. Berg and others have informative B1 deficiency info on Youtube . Please investigate each of the B vitamins to learn their roll and the best form. Be sure to talk to your health care professional before using any supplement.

[Bohus]

I have. Haven't made the connection to my ET but maybe it is connected

[Uzza]

Yes, I do. Another sufferer was prescribed Duloxetine for peripheral neuropathy and experienced relief. I have also experinced a great deal of relief. I also take magesium and Vit B complex every second day.

[plum27]

I have. Had very low B12, fixed by a series of injections, then supplements (multi-vitamin so as not to be too imbalanced, I hope) seem to be keeping my level in the normal range. Didn't make my feet normal again, but not getting worse at least. Doc said low B12 is common with PV and venisection and can cause serious problem. About the same time I got my B12 levels back up, I also became less tired. But I also changed from Hydroxyurea to PEG Interferon about the same time so who knows. I'm not back to normal, but much better than I was. Make sure you pay attention to your whole health status.

[Splb3317 in reply to plum27]

Hi,

I am thinking about taking peg interferon, as I am intolerant to Hydroxy. I am a bit wary because of the psychological effects I've read about. For now, I"m beginning venesections again, but that will not help the rise in platelets. I've grateful to hear of your experience. Many thanks.

Sandra

[Hidden in reply to plum27]

If you have numbness, this is a neurological sign. Your doctor should have followed the B12 guidelines which is to continue with B12 injections every other day until your symptoms go away or stop improving . This is because if not treated these symptoms can become permanent. A multivitamin is unlikely to be sufficient as the quantities are too low.

Once you have had injections or supplements the serum b12 blood test is useless. You have to go by symptoms.

If you scroll to the bottom of this link, there is a good list of typical B12 deficiency symptoms. Maybe you have other symptoms you didn’t know were related to B12.

b12deficiency.info/signs-an...

[plum27 in reply to Hidden]

Thank you for that. I will take it up with my GP.

[Hidden in reply to plum27]

Hi Plum27, if your GP needs guidance as to where to find the info, you can refer them to their BNF book. All UK GPs have access to BNF info in a book or the online BNF. It's in BNF Chapter 9 Section 1.2

Maybe your GP has not read the whole BNF entry as the bit about treatment for those with neuro symptoms is further down the page. Basically it's a B12 loading jab every other day for as long as symptoms continue to get better thereafter a jab every 2 months. I hope your GP is aware that under treatment can lead to permanent damage including spinal damage (SACD).

If your GP is " difficult " about restarting B12 injections again, because your serum B12 may now be in normal range, I would ask them to write in your notes that they have denied you treatment following national guidelines, even though at the time of original diagnosis, you had neurological symptoms which could well be the beginnings of sub acute combined degeneration of the spinal cord. (And if it gets worse, you can then sue them for malpractice.)

I really recommend you watch this film on:

b12deficiency.info/films/. "Documentary on B12".

Its about 1 hour, but really highlights the dangers of untreated B12 deficiency and how under recognised it is.

My daughter in law , a newly qualified doctor, told me they had about half a day teaching on vitamins! Not surprising doctors know so little about it.

Neuro symptoms can take some time to improve so patience may be required. Good luck.

[Nickthedevil]

I have permanent numbness in my toes and sometimes in my fingers too.

[jillydabrat]

Yes, numbness in my feet and fatigue was what I kept going to my GP about originally. Once I was diagnosed with PV and put on Hydroxycarbomide the numbness wasn’t to bad. Unfortunately it’s one of the irritating symptoms of PV but you do get used to it.

[Igreyhound]

I have numbness in my feet as well and never had this symptom before my PV diagnosis.

I intuitively feel it is related to my PV

I also have tingling sensations throughout my arms hands legs and feet

Comes and goes. Kind of like having sparkling water in my blood instead of flat

[souplover]

Reading all of your responses, I find myself wondering whether any of you know of research that shows that the PV (or ET) causes peripheral numbness? Could it be that many of us are older and the numbness is due to some other factor?

Personally, I love walking and hiking and the idea that the numbness could get worse freaks me out a bit. Does it continue to get worse or does Hydraea and other controls stop the progression?

[MPNJoe]

burning really bad more than numbness