Creepy loss of skin sensation

[Mariah]

Not sure under which category to post this, but this seemed to be the appropriate place:

The last months I`ve experienced more and more loss of skin sensitivity and the skin has become numbed (like when you put on numbing cream) in various areas of my body. The skin on my left leg is the biggest area, but also some of my right leg, genitals, thigh, some parts of my face (like my nose) and an area below my breasts are affected. The latter one I`ve actually had since I became sick 7 years ago, but all the former has only started a few months ago. I`ll talk to my GP about this, but just wanted your take on it. Have anybody got this or thinks this sounds familiar? What could it stem from? I of course assume it`s "just" another part of the ME, but I don`t like it still progressing after 7 years. I also think these neurological symptoms are so creepy and scary sometimes.

 

[barbc56]

This definitely needs to be checked. Good luck!

Barb

 

[Mary]

@Mariah - my sister who was a vegetarian for many many years started getting numb patches on various parts of her body, and tingling sometimes too. I told her to take B12 - vegetarians are notorious for being deficient in B12, and within a week the numb patches went away.

Do a search for "B12 numbness" and there's a ton of information. Hopefully it's something simple like this. Do you take B12? Also, folate can mask a B12 deficiency so if you're taking folate or folic acid, make sure you're taking lots of B12 with it.

 

[beaker]

I get numb on my face a lot. left side more than other. lips a lot. my eye. Sometimes other places on my body too -- arms, etch.. too. But mostly face. I have since the start of the illness ( 28+years) It comes it goes. Sometimes it stays awhile ( years) sometimes it is there and gone in a day. I had a very bad reaction to IVP I had w/ CT scan (dye injected with) where my entire body went numb and other my neurological stuff went all super whacky.( i.e. headaches,vision and perceptions and more sorry too too to type more right now but if you aren't having it, no need) Diamox took care of it then. Well not all of the numbness -- it went back to "usual" whatever that is.

Certainly worth talking to your dr. about. Could be increased cranial pressure . But if it is only numbness w/o other neuro stuff getting worse, I wouldn't worry. ( I know, easy to say)
Diamox only if it got super bad w/ other things. You have to taper up and down on it.

If you have any more questions happy to try and help. time for bed now !

PS My B12 levels just fine.

 

[taniaaust1]

I've got numb body parts during the course of this disease too.. and also had genital numbness for over 6mths (terrible for sex life as if a lack of energy isn't enough of an issue) but thankfully have that sensation back there.

I've though currently for past couple of months had loss of feeling in a nipple, its about 10 times less sensation then the other. In the past I've also had loss of sensation in body parts to temperature (was unable to feel burning water in on parts eg one of my hands) which used to be dangerous if I was having a bath.

My nose numbness at tip of nose I'm sure was due to Raynauds. As other said also make sure you aren't B deficient, the tests often can miss a deficiency so you may want to trial active B forms if you haven't done so already. In my case these things come and go.

 

[Crux]

I've had numbness happen all over too. B12 helped, but the cause of the B12 deficiency, ( not shown by serum B12 levels), was probably because of bacterial overgrowth, or SIBO.

 

[msf]

I think this is observed in Lyme, I would get checked out for that first. I don't know, but I would imagine this is a fairly specific symptom, so I would try googling it and seeing what diseases pop up.

 

[msf]

This article seems like a good introduction to the topic: http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

It mentions Lyme, Diptheria and Leprosy as causing major peripheral nerve damage. I don't know your medical details, but I would imagine Lyme is the most likely culprit out of those three.

It mentions many different infections and conditions that can cause peripheral neuropathy, though, so perhaps it is less specific than I thought (although I'm not sure how many of them cause loss of skin sensation).

Anyway, hope you get to the bottom of it.

 

[Helen]

Not sure under which category to post this, but this seemed to be the appropriate place:

The last months I`ve experienced more and more loss of skin sensitivity and the skin has become numbed (like when you put on numbing cream) in various areas of my body. The skin on my left leg is the biggest area, but also some of my right leg, genitals, thigh, some parts of my face (like my nose) and an area below my breasts are affected. The latter one I`ve actually had since I became sick 7 years ago, but all the former has only started a few months ago. I`ll talk to my GP about this, but just wanted your take on it. Have anybody got this or thinks this sounds familiar? What could it stem from? I of course assume it`s "just" another part of the ME, but I don`t like it still progressing after 7 years. I also think these neurological symptoms are so creepy and scary sometimes.

Hi Mariah,

I agree with @msf that your loss of sensitivity might be from Lyme. I have been diagnosed with Lyme but before a top neurologist was very confused about my sensitivity loss. In Lyme it is patchy that isn´t well known, which means that it doesn´t follow the usual "map" of how nerves might be affected I learnt later. Dermatomes are areas in one of the maps, and loss due to peripheral nerve engagement is another one but those maps couldn´t be used in Lyme.

Lyme causes inflammation in the outer layer of the nerves, I was told by my doctor, and that could happen anywhere along the nerves which makes a neurologist confused when trying to follow one of the other two maps. I also agree with you that this is creepy. I hope that you can get tested for Lyme properly.

 

[Mariah]

Thanks so much for all the replies and input!

I strongly doubt that I have Lyme. As far as I know I have never been bitten by a tick or had a rash, and if I were to be among the percentages that didn`t notice or didn`t have a rash my onset 7 years ago don`t fit with the little that I have read of borreliosis. Anyway, wouldn`t it be weird that this exact symptom showed up 7 years later? I also understand there is a lot of cotroversy about this chronic Lyme condition versus the post-Lyme condition we know for a fact to exist, but I don`t know enough about it to really say anything for sure. @Helen: How did they find out, where were you tested etc?

I have struggled with my b-12-levels before, and I take shots of b-12, but I may have been really bad at remembering the last months, so I`ll definitely start taking these more often again and se if it helps.

@beaker : This did become a problem after a month where I was generally exhausted causes by lack of sleep. I am one of those who needs about 12 hours each night, and I got maybe 6-8 that month. My vertigo also got worse, and my pain levels were up, so you are right: there really is a twisted consolation in that other symptoms got worse at the same time .

(@teniaaust1: I agree. The effect on the sex life is the worst, the other areas I can deal with more or less.)

I have noticed the numbness on the front of the skin on my fingers now also, but also noticed that the numbess on all the parts of my body gets stronger and weaker. At least that`s encouraging, that it doesn`t just get worse and worse, but wax and wanes.

Anyways, good to hear that others also suffers from this. One can get pretty "paranoid", especially about these neurological symptoms.

 

[Alliewallie]

I too have had full body numbness. I have had cfs for over 10 years after EBV. After my 2nd baby, my cfs seemed to hit a new stage. I got hit by another virus and I developed severe dry eye and a burning scalp and painful front teeth. I couldn't put any cream on my face or use shampoo as it felt like my head was on fire. 6 months and 3 specialists later (2 cfs and 1 neurologist) I was diagnosed with small fiber neuropathy. Pain meds for life. The facial pain was so bad I eventually told my cfs specialist that living in pain is like being tortured and I wasn't sure how long I go on in that state. Lyrica made my fatigue so much worse and I just wished for bed all day. As I have small children, I kept pushing through without lyrica and then about 3 months later I woke up one morning with full body numbness. I didn't know what was going on. Whilst I had no pain anymore (which was fantastic),I felt so weird. I couldn't feel water temp, I couldn't feel the clothes I was wearing and I felt like I was going to pass out out at any time. I had a massage and I couldn't feel it. I could feel a bit of pressure but nothing else. To cut a long story short, a cfs Dr said he could help but I didn't really believe him but I took his advice anyway. I started taking 200mg of SAMe and I am now up to 400 mg every morning. It has been about 6 months now and I have most of my touch sensation back. I have tingling in my teeth but no pain. My scalp feels hot but does not burn like fire anymore and no pain. It didn't happen overnight, but thank god for it. I am still fighting fatigue,have severe dry eye, and vision problems but I am not in burning pain. It probably won't work for everyone, I don't even understand why it worked for me but it you think it may help you then research it and go from there. I am also on dhea, b12 injections, ribose, testosterone, methyl folate so it could also be the combo effect with SAMe that helped me. I have no doubt that without SAMe, I would be stuffed!

 

[Tammy]

I also have had full body numbness............not a complete loss of feeling but more like a muted sensation. Like Alliewallie.....(above poster)......I also have EBV for almost 20 years.

 

[PennyIA]

DIdn't get a chance to thoroughly read all responses, but I had similar sensations from B6 toxicity (which may have hidden the b12 deficiency) or might have been tied to unable to process the B6 I was taking in and having a paradoxical b6 deficiency. But B12 levels and B6 levels in serum were exceptionally high... B12 doesn't have a 'toxicity' range so it was treated like 'high is good'; but B6 does have a toxicity range, and can lead to lots of nuerological symptoms.

 

[Kati]

Hi @Mariah by all means check with your dr. He/should consider ruling out Multiple Sclerosis, among other diseases. It is not to scare you, but it is best to be diagnosed properly.

sending best wishes.

 

[Mariah]

Hi! I did see a neurologist for this and for some neurological pain I had. I had an MRI of the brain and several other tests. Same answer as always: Couldn`t tell me what the cause was, didn`t know. The numbness is still here, but varies in intensity. I`ve learned to live with it I guess, but it still feels creepy, and along with my chronic vertigo I just feel kind of "cut off" from the world, like I am living in a dream.

I am on MabThera/Rituximab now, and my hope is that this will make me better.

Thanks for all the good advice guys, really appreciate this forum!

 

[PennyIA]

A b6 toxicity test is a simple fasting blood test. I know nuerologist never looked for it and I suffered much longer than necessary given how simple it would have been to diagnose ... just mentioning it because it if someone could have saved me the years of issues and possible permanent damage to my nerves? I'd have been thankful.

Obviously, it might not be b6 toxicity; but a $20 USD blood test is a small price to pay if it identifies something.

 

[IntelligentImpulse]

I agree with @PennylA, the b6 toxicity test is affordable and could lead to you finding out something you didn't know you had. It really is a small price to pay.

 

[Mariah]

Thanks for the input! I strongly doubt that b6 toxicity is the cause of this. I don`t take supplements that contain b6, and I eat very little of the food sources that contain b6. And anyway there hasn`t been cases of this documented from food intake alone. I think this is some kind of neuropathy caused by my ME, but don`t know for sure. I have a lot of the neurological symptoms.

 

[PennyIA]

Thanks for the input! I strongly doubt that b6 toxicity is the cause of this. I don`t take supplements that contain b6, and I eat very little of the food sources that contain b6. And anyway there hasn`t been cases of this documented from food intake alone. I think this is some kind of neuropathy caused by my ME, but don`t know for sure. I have a lot of the neurological symptoms.

Just to let you know, I was told for two years I could NOT possibly have B6 toxicity and it would be a waste to get the test. I had asked for it because my mother had similar symptoms and she tested positive for B6 toxicity as well. Neither of us were taking in enough B6 to fit the criteria for being at risk of B6 toxicity.

I think they don't know enough about the mechanisms and possible genetic traits - and as such, B6 toxicity gets under tested for.

 

[Invisible Woman]

Lots of great advice from other folks.

I get numb patches from time to time- they can be quite small or about the size of my hand. They can last for minutes or days. I notice them mainly on my thighs but they can occur elsewhere. Sometimes instead of numb patches there can be stinging or burning patches.

My B12 levels are fine. Don't think it's Lyme (but that's a whole other can of worms), as far as I know my B6 levels are fine.

I have noticed that when this plays up it is in concert with a whole group of other neuro problems. In my case it's mild and the neurologist didn't seem too worried (for what that's worth) so I just put it down to one of those ME things.

Having said that it if there was a significant change then I would go and have it rechecked.