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numbness

Discussion in 'Peripheral Neuropathy' started by m1she11e, Aug 13, 2009.

  1. m1she11e

    m1she11e Senior Member

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    About 12 years into my 27 year battle with being ill, I developed numbness in the right side of my body. This is also when I had my Mercury fillings replaced.
    It got really bad for about 6 months and then eased up, only to resurface if I had a few drinks (rarely) or got a cold or flu. My right eye did remain weak and some what numb. It is difficult to move and always feels like there is pressure behind it.

    Now, about 8 months ago after "attempting" Valcyte, then Famvir, my numbness came on stronger than ever. Now I have been off of all anti virals for 6 months and the numbness remains. It now travels around both sides of my body. If I attempt to work out with weights :eek: I get increased pins and needles the next day. I can always feel my body so it it never totally numb. It just feels like it has fallen asleep.

    I have had an MRI of the brain and upper cervical spine. So far nothing shows up. I am supposed to get more MRI's done and see a Neurologist.
    Anyone else feel too tired to go to one more doctor and have one more needle stuck in you??? I also know that my HHV6 virus and "possible Lyme" could cause a false MS result after a spinal tap. Im not big on getting an MS diagnosis since the meds for that arent exactly promising.

    So, anyways... This long post is to find out if others experience numbness or pins and needles. Is this a CFS/ME symptom or exclusive to MS and the like?

    Any feedback is appreciated.

    Michelle
  2. Jody

    Jody Senior Member

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    Hi M1shelle,

    I don't know if what I've experienced is similar to yours, but just in case it might be...

    I get, or used to get (it is far less now, sometimes nonexistent) a variety of neurological type sensations that were very distressing to me.

    They label it parasthesia which just means there's a grab bag of these that they can't explain. People with many different types of conditions can have them.

    Maybe google parasthesia, see if anything there sounds familiar.

    Some of mine have been, -- hard to describe some of these -- a numbness and tingling, usually mostly in my lower arms, wrists, and hands. Sometimes in my face, especially around my mouth. Vision can feel fractured -- it's like I see everything, but what I'm seeing ... feels ... like out of time, or flowing funny -- like an action movie where they speed it up, or slow it down, or freeze it for a few seconds -- like I say, hard to describe. :)

    I have had stabbing needle-like pain in one arm (that also tends to tendinitis) when I am very anxious, or overtired.

    My hands can get clunky, like fingers don't want to work properly if I'm trying to do something like write or do up buttons or anything more detailed like that.

    I have had times where ... like if you've had the flu really bad and that feeling of hot/then cold in an instant, that feeling of your body's outline fading in and out, you're not sure ... where it is anymore ... also will happen in my head, in my thoughts .. things swirl ...

    For a long time, I could "feel" cfs behind and around my eyes. It was different from when I was ill. My vision also deteriorated a bit 10 yrs ago when I went chronic, and when I would try to really narrow down where the vertigo resided, it was behind and around my eyes, towards my ears, so a sinus thing I guess. To use a weird word, I felt blobby behind my eyes. Less sharp, less focused.

    When other symptoms would act up, when I would have a crash, all these types of things would flare like crazy. But also, if I spent alot of time resting, listening to these cues and knowing I needed to rest, eventually they would start to diminish -- not go away but lessen.

    Don't know if any of this will help, but just in case ... :)
  3. Frickly

    Frickly Senior Member

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    M1shelle

    I used to get numb on one side of my face and it would travel down my arm on the same side. I have also had numbness in my feet and other parts of my body. I would also get pain on one side of the body. I would have a headache on the right side of my head and the pain would go all the way down to my right foot. My doctor told me that my mycoplasmal infection can cause symptoms almost identical to MS or rheumatoid arthritis. I did have an MRI and saw a neurologist who told me I did not have MS. When I started the antibiotics all my symptoms increased dramatically, including the numbness. Once the antiotics started working much of my pain and numbness went away. I have not had the numbness problem for a few months.

    Short answer is that numbness could be other things besides MS so I wouldn't worry too much but would see the neurologist just to make sure.
  4. m1she11e

    m1she11e Senior Member

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    numbness and other odd sensations...

    Thank you both for your answers.

    I do have alot of crazy eye symptoms. I have awful vision days, but then have almost normal days too. My vision can jump and when I move my eyes things can blur for just a moment. There are other "hard to describe" eye symptoms.
    They can be difficult because I dont like making eye contact when it is bad. I get that sore, weak eye pressure kind of feeling alot too. I think my Vertigo stems from eyes as well.

    I also have a Mycoplasma infection. A LLMD diagnosed me with Lyme as well.
    I know they can both cause MS like symptoms. I just got so bad that I decided to go off the antibiotics too. It felt like my body wasnt keeping up with the "die off" and I was scared I would get worse.

    Recently I ordered Dr. Jernigan's CNS detox homeopathic product and his Lyme/Virus formula. I havent gotten it yet but will keep everyone posted. Im tyring the detox like crazy and non drug bug killer combination. My WBC count dropped so low that antibiotics were not a good idea as they can lower WBC's even more. I may consider them again at a later time???? (Confusing stuff there...)

    I appreciate you relating to my symptoms!! It takes the edge of the fear.
    I have a fun Neuro appointment set up in September. If Im real lucky he will stick a needle into my spine. Thats just what I need about now! :rolleyes:

    Michelle
  5. Jody

    Jody Senior Member

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    M1shelle,

    All of these things can feel really scarey. And they can be so hard to describe, or it can be so hard to know if you're really grasping someone else's description, so very difficult to know if what you've got is the same as anyone else. Can feel really alone and like there's no answers.

    But there are answers. And there will be ways of treating your symptoms at least and hopefully of healing them for good.

    There was a tincture my naturopath had me on for 2 yrs, majored on Reishi mushroom, also shitake and maitake, astragalus I believe, ginseng, licorice, and a half a dozen other things -- antiviral and antibacterial many of them -- I had a strong reaction for the first few weeks, I'd get hot and feel like I had little red pinpricks popping out all over me (though there weren't any). Started esp. in my face, the whole face, then over weeks, the area began to get smaller, and eventually that reaction disappeared. She figured it was die-off and looking back at it that's how it looks.

    It was one of the early key players in my healing. And it had no antibiotics in it. There are other antibacterial and antiviral agents out there that are not antibiotics if you're wary of them right now. Maybe there are some other things you could try. You could google antibacterial, antiviral, alternative, -- something along those lines. Maybe find something new.

    I can tell you, just speaking of my own experience, that those symptoms I used to have all the time, so severely, have largely passed away. They do flare some if I am overtired or stressed, but they are nothing like they used to be. And flares no longer last weeks, occasionally days, but usually just a day of quiet will be all it takes now.

    I can't promise anything, you know that. :) But I can assure you that it is possible even for frightening towering symptoms like you've described, to diminish and even go away.

    If you have alot of things with your head and face, and if vertigo seems to be residing in specific places in your head, another thing you could consider is sinus irrigation, ie, getting water up your nose. :D The traditional method is a neti pot (what they'd use in India, but you can get them here now). I used a turkey baster. :D

    I found it an uncomfortable procedure, didn't like it at all. Feels like when you're in the pool and get ... well, get water up your nose, eh? But, I did this for a few months, all the time thinking it was a waste of time, water, and my poor nasal passages. Until one day I realized that vertigo in my head (esp. between my right eye and ear) had diminished significantly, I looked back and realized it had been less for some time but didn't really notice it for a couple weeks. Helped with that feeling of disorientation, and also brain fog. And my vision is subtly clearer as well.

    Just a thought.

    Might also recommend Vit. D3. In Canada, at any rate, that is the only kind of Vit. D tablets they sell. D3 is the one you'd want. I have found that by taking 6,000 IUs a day, it takes away a feeling of heaviness, of weakness, a feeling that I can't stand up. My breathing would be laboured with a feeling of pressure in maybe my diaphragm. Also disorientation and fractured thoughts. If I take them I don't get this. If I stop for a couple weeks (if I run out) those symptoms begin to slowly come back. Within 48 hrs of taking D3 again, they go away again.
  6. Jody

    Jody Senior Member

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    Forgot to mention this earlier.

    M1shelle,

    Weights may be too much at this point. If you feel like you need some type of exercise, something like yoga stretches, or tai chi might be less demanding on your body right now. Might even be a good idea to let the exercise thing go for a bit.
  7. m1she11e

    m1she11e Senior Member

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    Hi Jody,

    I appreciate the advice. Ive done nothing but "alternative" for the last 26 years. It is the medicinal mushrooms and a whole host of other things that brought my immune system up went in crashed the one time before. I am doing those again now. Im doing some of the anti-viral, anti-microbial herbs and supplements but have found too much die off of any kind sets me back.

    Im trying to balance it all. Oh, and I have been faithfully using the Netti again. It does make a difference but I forgot about it for a long time. (That or I got sick of the swimming under water feeling) I started back up about 2 weeks ago. I havent actually been spinning this last week, just can feel the "almost spins" coming on in relation to the Vertigo. I think it is getting better.

    Im doing alot of homeopathic drainage remedies. Ive touched on hemeopathics off and on all of these years but the whole Mike thing has made me re-visit them. I did the whole EAV test (energetic testing) and was started on 4 formulas I did not expect. I wanted the ones that killed the bugs in me!!!! We are doing one for the liver, one for dental issues, one for old vaccines and one for the Lymphatic system. It was the dental and vaccines ones I did not expect. They came up as priorities before we can get into the killing the bad guys phase. Maybe that is the way it has to work with homeopathics??? Im doing my own weird thing and tapping on EFT points when I take the remedies. Cant hurt. (As long as no one else sees that is)

    Oddly, and now I am way off the track of numbness, I have not been wired tired starting after the first week on the above mentioned remedies. I am peaceful tired. I have energy when I wake up, then when it runs out I take a peaceful nap. I feel "nap groggy" but not awful until bedtime and have been sleeping like a rock at night. This is not the case for me normally. I usually am so tired but can only rarely nap and wake up all through the night. I could be crazy :confused: but it feels like my body is going into sleep/heal mode. It feels better than cant sleep/dead mode!!!

    Anyway, back to numbness. I was just trying to let go of some of that fear.
    I like the "I had it and it passed" stories. :)

    Oh, I know Im not supposed to work out. There are days I can barely walk to the bathroom so they are NOT work out days. Im an X Pilates instuctor and really believe it is important to excersise though. I dont think I suffer after I work out. I dont push it at all. I do light weights and alot of stretching and breathing. I can go for a month where I cannot do either. I find though, even if it is 10 minutes of excersise and I feel really tired right afterwards, it improves my mood and helps me sleep better. This is a very fine line area for me and I try to make it a healthy thing when my body lets me. I also read about a LLMD who has is patients work out every other day with light weights. (not cardio) He sais to rest if needed in between but try to work up to a half an hour a day. His reasoning is that the day you work out, your body may be tired but the next day your immune system is slightly kicked up a notch. Alot of people who did this said at first it almost killed them but it really helped in the long run. ????? Like I said, fine line...

    Wow, my vision allowed me to type all of this...

    Michelle
  8. Jody

    Jody Senior Member

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    M1shelle

    I think the main stream medicine media has done a royal number on us all.

    Even though you and I have seen improvement from alternative means we are still ... wondering if it can really work. Even though we know it does, from our own experience. I know other people like this as well, it's not just us that's weird. :D

    Well, whatever the cause I'm glad to know you've had some relief (I am pretending that I don't know that it's because of going back to some of your old healthy treatments -- because if I let on I thought it was due to these treatments you and I will be both compelled to dish out all the disclaimers we have ever heard on the subject ...:rolleyes:)

    Sounds like you've got a handle on your own reactions to exercise, and sound like mostly you are able to walk the fine line on that balance beam. I was doing half an hour of weights 7 yrs ago with no problem and feeling really good that summer, so I know it can be done, if one is able to ... walk that fine line. Glad it works for you, at least usually.
  9. Cort

    Cort Phoenix Rising Founder

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    About 15 years ago out of the blue I began experiencing numbness in my left leg, left hand and arm, my nose and mouth. My doctor examined my range of motion and found that it was limited in my left foot. I went to a neurologist who suspected MS, did an MRI and found some abnormalities but nothing suggesting MS. Eventually it went away except for the restricted range of motion in my foot.

    About 10 years ago in the midst of my worst MCS ever my hands and feet started falling asleep - virtually all the time. At times it would take just a few minutes sitting in one position to have my leg fall asleep. That was definitely do to excessive mercury intake from eating too much fish. Oddly enough by blood mercury levels were normal but when I cut out the fish it all disappeared over a couple of months.
  10. Frickly

    Frickly Senior Member

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    Cort

    Thats very interesting since my son was justed tested and found to have high levels of mercury and lead. When I was pregnant with him I had two rhogam shots that contain mercury and I suspect this is part of our problem. When I get him in a better place and have some more money I would like to be tested for heavy metals as well.
  11. Diane

    Diane Guest

    Oh Michelle,
    I have also been dealing with this numbness (or altered sensation my friend said this would be a better description) but whatever its not nice and can actually be a bit scary...my mum had parkinsons BUT THIS iS NOT GOING TO BE THAT......just another "blessing from the beast"...thought on a serious note I plan on going to drs in a week or so just to have all the basic tests ran again as its been about a year and I would like to see if there are any changers that may explain the numbness and extra pain.......fingers crossed
  12. dannybex

    dannybex Senior Member

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    Mercury, heavy metals, etc..

    Hi Michelle,

    If your symptoms came on when you were having your amalgams removed, even if they disappeared for years, for decades, I would still suggest getting a DDI (Doctor's Data) Hair Elements Test, and look into the Andrew Cutler protocol.

    One's blood level of mercury can be 'normal', or non-existent, but that doesn't mean the tissue levels are normal. If your minerals are deranged on the Hair Elements Test, and fit Cutler's "counting rules", then what you're experiencing may be the result of mercury that was never properly chelated (removed) from your body as is the case with many of us. Some people can handle/detox the merc from fillings, etc., with no problem, but others cannot, without help.

    I too had my fillings out about 20 years ago, because of some numbness and also twitching. They both got better, but would come and go...and came back big time last year (then went away) and then came back again about 4 months ago. I was found to have elevated arsenic, and also, from analyzing the test results, a 90+ percent chance that my symptoms are due to trapped mercury.

    I keep putting it off (I'm not sure what my latest excuse is!), but I'm going to start Cutler's ALA protocol. If you do a search for "Cutler" on these boards you'll turn up a thread with more detail. He's quite outspoken, but got his degree at Princeton studying this, and recovered from his CFS by developing this protocol.

    And of course there's tons of info via Google by searching "Andy Cutler" "Andrew Cutler" and mercury.

    Numbness/tingling could also be due to various deficiencies: thiamine, vitamin d, fatty acids, etc...

    Hope this helps,

    Dan
  13. shannah

    shannah Senior Member

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    I have a lot of issues with numbness and was really interested in part 2 of Lucinda Bateman's talk in December 2009. In a slide, she lists damage that retroviruses can do including damage to the nerves and neuropathy.

    It's posted over on youtube.
  14. Jody

    Jody Senior Member

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    Thanks Levi.

    Unless you're pumping a lot of adrenaline, huh? Wonder how that works?

    I have improved drastically. I'm mentioning this because while it's of course no guarantee of improvement for someone else ... I think it helps to know that even with some of these very frightening and extremely debilitating symptoms, even these can decrease to the point of good functionality again. And they can even disappear, as some of mine have.

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