Numbness in legs?

[Sparrowhawk]

Last three days I've had a scary new symptom.

Standing in the shower, it's the sensation like I'm steadily losing sensation in my legs from the waist down. If I move around it kind of reassures me I won't fall over, but it was extremely disconcerting. I had this happen two days in a row. Yesterday I did the shower so fast in fear it would happen again, it barely got started.

Last night though when I woke up with stomach upset, I realized that some of the skin sensation down my right leg was fuzzy -- not like when a limb falls asleep and then you get the tingles as circulation is restored. This morning again I'm getting it just standing around in the kitchen.

I got to wondering if this could possibly be related to POTS, e.g. circulatory issues, or if I've been misdiagnosed and this is actually some sort of MS thing.

Does anyone else get this? Any advice?

Many thanks.

 

[~ Ariel]

Hi, Sparrow Hawk,

Ouch ! ~ New symptoms, hey ! ~ All my sympathy: 15 years on, I remain amazed at how they can spring up on me out of the blue ~ to put it politely: " what now ?! " ~

I have and continue to experience something similar to what you describe, but not quite identical ( amazed at your ability to describe physical sensations so accurately) - I call it " jelly fish legs", and it dos feel like sudenly my legs can't support my weight, and I may ( and sometimes do) collapse - sometimes accompanied with numbness, but not always ~ I tend to experience this symptom whenever circumstances demand that I 'overdo' things - walking, especially - over my acceptable limit. If I persist in activity, then, ultimately, the outcome will be extreme muscular weakness -not being able to stand or walk at all for x period of time~

Sadly, no advice other than the obvious : if it concerns you, and you are unsure as to the cause (ME?CFS? Circulatory...), you may wish to pass it by your doctor ? ~ Practically, because I get this a lot, when I 'feel it coming', if I must move around the house, I make a quick mental check of support options at all stations ~ Besides which, when experiencing such, I find that laying down and placing 2 smooth hot stones (granite pebbles or such, heated in oven to pleasant temperature, think: hot water bottle), under my soles, or sometimes under my knees, extremely soothing~ as would a gentle masssage...was there someone willing ! ~
All good wishes ! ~

 

[Crux]

Hi Sparrowhawk;
The first thing that crosses my mind is B12 deficiency. There can be the weirdest nerve sensations. Freddd has posted an exhaustive symptoms list in the beginning of " B12 the Hidden Story".

Here's someone else's description of their B12 deficiency symptoms. It includes a "buzzing feeling" down the legs.
https://sites.google.com/site/jccglutenfree/b12deficiencysymptoms

 

[Sparrowhawk]

Hi, Sparrow Hawk,

Ouch ! ~ New symptoms, hey ! ~ All my sympathy: 15 years on, I remain amazed at how they can spring up on me out of the blue ~ to put it politely: " what now ?! " ~

I have and continue to experience something similar to what you describe, but not quite identical ( amazed at your ability to describe physical sensations so accurately) - I call it " jelly fish legs", and it dos feel like sudenly my legs can't support my weight, and I may ( and sometimes do) collapse - sometimes accompanied with numbness, but not always ~ I tend to experience this symptom whenever circumstances demand that I 'overdo' things - walking, especially - over my acceptable limit. If I persist in activity, then, ultimately, the outcome will be extreme muscular weakness -not being able to stand or walk at all for x period of time~

Sadly, no advice other than the obvious : if it concerns you, and you are unsure as to the cause (ME?CFS? Circulatory...), you may wish to pass it by your doctor ? ~ Practically, because I get this a lot, when I 'feel it coming', if I must move around the house, I make a quick mental check of support options at all stations ~ Besides which, when experiencing such, I find that laying down and placing 2 smooth hot stones (granite pebbles or such, heated in oven to pleasant temperature, think: hot water bottle), under my soles, or sometimes under my knees, extremely soothing~ as would a gentle masssage...was there someone willing ! ~
All good wishes ! ~

Thanks kindly for your response. Hearing from folks like you with similar symptoms helps normalize things (not that it isn't still alarming as a sensation). At least it helps me understand it could be part of the whole syndrome picture.

I did reach out to my MD but haven't heard back yet.

What I find odd is that it seems to happen mainly in the shower, or most recently, in bed, so now I'm wondering about chlorine in the water and MCS, or mold stuff.

 

[Sparrowhawk]

Hi Sparrowhawk;
The first thing that crosses my mind is B12 deficiency. There can be the weirdest nerve sensations. Freddd has posted an exhaustive symptoms list in the beginning of " B12 the Hidden Story".

Here's someone else's description of their B12 deficiency symptoms. It includes a "buzzing feeling" down the legs.
https://sites.google.com/site/jccglutenfree/b12deficiencysymptoms

This is interesting because I left out the buzzing in my head in the early morning hours. I eat an almost entirely meat and fat diet, and almost no carbs (due to my severe reactive hypoglycemia) so it seems odd that I might have a B12 deficiency. But anything is possible. I have some blood work to do tomorrow so I'll ask if I can add that test. Thanks!

 

[~ Ariel]

Thanks kindly for your response. Hearing from folks like you with similar symptoms helps normalize things (not that it isn't still alarming as a sensation). At least it helps me understand it could be part of the whole syndrome picture.

My pleasure ! ~

I did reach out to my MD but haven't heard back yet.
What I find odd is that it seems to happen mainly in the shower, or most recently, in bed, so now I'm wondering about chlorine in the water and MCS, or mold stuff.

Ah! ~ That is very different from my case, a very specific trigger indeed ~ reading your reply makes me ponder as to just how much " Inspector Cluzot" talent & dedication each of us need to elucidating new symptoms, triggers, etc - ! ~
Best of luck, please keep us updated? ~

 

[Lou]

This is interesting because I left out the buzzing in my head in the early morning hours. I eat an almost entirely meat and fat diet, and almost no carbs (due to my severe reactive hypoglycemia) so it seems odd that I might have a B12 deficiency. But anything is possible. I have some blood work to do tomorrow so I'll ask if I can add that test. Thanks!

Like Crux, my first thought was it sounds like what I experienced with b12 and folate deficiency. Fredd and many others believe ME/cfsers only benefit from the active forms, methyl and dibencozide b12's and methylfolate (Metafolin) for folate.

You may wish to read Fredd's basic B12 protocol, there's a wealth of information and it shouldn't take you long to find others with your neurologic symptoms (if that turns out to be your problem).

When it comes to ME not sure how much trust Fredd has for serum b12 values as it appears our deficiencies lie within the tissues.

I wish you well, hope you're better soon.

 

[Sparrowhawk]

Like Crux, my first thought was it sounds like what I experienced with b12 and folate deficiency. Fredd and many others believe ME/cfsers only benefit from the active forms, methyl and dibencozide b12's and methylfolate (Metafolin) for folate.

You may wish to read Fredd's basic B12 protocol, there's a wealth of information and it shouldn't take you long to find others with your neurologic symptoms (if that turns out to be your problem).

When it comes to ME not sure how much trust Fredd has for serum b12 values as it appears our deficiencies lie within the tissues.

I wish you well, hope you're better soon.

Thanks, I just dug through my thick medical folder and found a test from last year at Kaiser that had my B12 at 1200 which I think is high end of normal. I wonder if that also indicates there is an absorption issue.

I will look into the Fredd materials. I'd just dipped my toe in the water of the methylation stuff since getting my results this past weekend, but had stuck with Rich Van K threads so far, so as not to confuse myself (any more than I already am, it's complicated stuff!).

Thanks again.

 

[Lou]

It is complicated and I'm bias toward Fredd's thoughts as I did poorly on Rich's protocol (many, however, have apparently had the opposite experience). If you choose the active protocol I'd just caution to go slow, it's powerful and you will have 'start-up' effects, not altogether pleasant. Make sure you supplement potassium whichever protocol you decide to try.

My other two cents (and that's all it is) is that the water/fungi link may just be a red herring. Makes more sense to me the connection to showers are fluctuations from moving around to standing in one place and slight body temperature changes.

 

[Sparrowhawk]

It is complicated and I'm bias toward Fredd's thoughts as I did poorly on Rich's protocol (many, however, have apparently had the opposite experience). If you choose the active protocol I'd just caution to go slow, it's powerful and you will have 'start-up' effects, not altogether pleasant. Make sure you supplement potassium whichever protocol you decide to try.

My other two cents (and that's all it is) is that the water/fungi link may just be a red herring. Makes more sense to me the connection to showers are fluctuations from moving around to standing in one place and slight body temperature changes.

I'll try showering in a different bathroom tomorrow and see if that makes any difference.

 

[Sea]

I'll try showering in a different bathroom tomorrow and see if that makes any difference.

Also maybe try replicating the time standing or the moves you would normally make while showering - but not in the shower. That would show you whether it is OI related or positional which could indicate spinal issues.

Of course it could still be OI related even if just standing doesn't do it. It may be that the warm water contributes to vasodilation and blood pooling.

 

[Crux]

Hi Sparrowhawk;

I agree it's hard to believe we could have a B12 deficiency, even when we eat so well. One possibility, in addition to malabsorption, is transport. There could be a shortage of transcobalamin. ( There could be many other problems, unknown.) For many of us, B12 and its junk analogs get stuck in the blood serum, unused.

The blood serum B12 is measuring the unused B12, and the junk analogs, so it doesn't indicate deficiency or sufficiency.

I just took a look at your 23andme thread, and I believe Valentijn advised you well, according to your snps.

BTW, My serum B12 is >3000. I have to keep it high to stop nerve damage from occurring.

 

[Sparrowhawk]

Also maybe try replicating the time standing or the moves you would normally make while showering - but not in the shower. That would show you whether it is OI related or positional which could indicate spinal issues.

Of course it could still be OI related even if just standing doesn't do it. It may be that the warm water contributes to vasodilation and blood pooling.

+forehead-smack+

Brilliant idea -- clear observational science. Will do that later today and see what happens. Thanks.

 

[Sparrowhawk]

Hi Sparrowhawk;

I agree it's hard to believe we could have a B12 deficiency, even when we eat so well. One possibility, in addition to malabsorption, is transport. There could be a shortage of transcobalamin. ( There could be many other problems, unknown.) For many of us, B12 and its junk analogs get stuck in the blood serum, unused.

The blood serum B12 is measuring the unused B12, and the junk analogs, so it doesn't indicate deficiency or sufficiency.

I just took a look at your 23andme thread, and I believe Valentijn advised you well, according to your snps.

BTW, My serum B12 is >3000. I have to keep it high to stop nerve damage from occurring.

Appreciate your taking the time to review that other thread on the 23andMe results. I'm running into all kinds of controversy about whether that CBS/sulfur thing is an issue. I was able to test sulfur yesterday and it was at the second highest level for the test strips. But then I eat collards and meat and eggs and coconut every day, so even if I didn't have an issue I would think I'd test high.

I wish I could find a methylation advisor in my area, I'm just not comfortable trying to self-navigate either the Rich or the Fredd protocols without someone testing me to see if I'm getting the right results.

Very helpful to hear your B12 is that high. My nerve issues are manifold -- jerking muscles randomly all over my body, throughout the day, and at night it's worst, including bottoms of my feet. Now this numbness thing.

 

[Crux]

Hi Sparrowhawk;

I understand the hesitation. It took a decade of decline before I realized the matter. By the time I began to take the sublinguals daily, I was in a terrible state... Pain like I had never experienced, numbness, balance gone, incontinence, cognitive dysfunction...the works.

I would loose control of my hands and feet, I remember they would spasm. My arms would flap up in the air.

Anyway, I just don't want this to happen to you. You are a kind addition to this forum, funny too!

 

[Sparrowhawk]

Aw shucks //kicks dirt with toe// you are too kind. Thanks.

Yes that's exactly the maddening thing, I'll be trying to sleep and my arm just whaps up into the air. It happened to me a month ago -- on the acupuncture table -- my hands had been resting on my chest, and I guess my tricep went, and I wound up wiping several needles off my belly.

So it sounds like you took the bull by the horns and self navigated the methylation thing? how long did it take you to get it sorted?

 

[Sparrowhawk]

This sensation of numbness or incipient loss of control of my lower half has come and gone throughout the afternoon today when I'm upright. So it's probably not the shower that is to blame. I'm beginning to wonder if it is the chair I've been sitting in to work. Taking four days off starting tomorrow so perhaps that may help as well. Will try to get to the chiropracter to see what she says.

 

[Crux]

Well, I've been at this for about 6yrs., and I still can't say that I have it sorted yet.
I do now know I need to take at least 15mg. daily of the B12 subs. ( There's a wide variance here for individual needs.)

I did have to self navigate, spent alot of internet time...took some years to realize the dosage. ( I've been taking this dosage for about 9mths.)

When I first started having strong symptoms, about 13 (?) yrs. ago, I thought it was mechanical, that I was overusing my hand, or that my shoes were the wrong fit. I began to drop things, also suspected MS...spent most of my time in denial.

Hope you have a great vacation, easy peasy!

 

[Sparrowhawk]

Thanks Crux. I'm dearly hoping I don't have to spend that many years getting a handle on all this.

But, as they say, I'd prefer that to the alternative!

 

[Lou]

"If I were starting all over with Fredd's active protocol"

I'd first purchase the following:

1 bottle of Solgar folate (Metafolin)
(pkg. of 3) B12 Infusion by Enzymatic Therapy
1 bottle of Dibencoplex 10,000
1 bottle of Carnitine Fumerate by Dr's Best
1 bottle of potassium

I'd put the Dibencoplex and Carnitine away in the cabinet (or wait a month to purchase) for a month before using --or until information gained from one of Fredd's threads allowed earlier use.

When ready to start I'd take only a half tablet or less of Metafolin for first two or three days. During this early period I would not add anything else from list above other than potassium (check protocol for K use, very important) or perhaps 1 mg or even less of B12 if start-up effects come early (new neurologic symptoms).

After two or three days I'd add 1-2 tablets of sublingual B12 (1-2 mgs).

By day 5 I'd go to two or three times a day of above doses.

By the end of the first month you'll know much more about the protocol and how you react to it, and can then introduce the other two key supplements.

If I had it to do over I wouldn't confuse matters with all the other lesser methyl donors of the protocol, not until something showed a definite need for it, TMG, for instance.

Start-up effects, when they come, are pretty much trial and error to balance folate and b12 and also the new need for much more potassium.

All this is, of course, unsolicited information and a better option is to gain a full grasp of the protocol from the many associated threads; I only offer it as an oversimplified method I might try if starting out anew.

Best of luck,