1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Tingling tip of tongue

Discussion in 'General Symptoms' started by justy, Mar 14, 2014.

  1. justy

    justy Senior Member

    Messages:
    2,495
    Likes:
    2,370
    U.K
    anyone else get this? causes?

    also get terrible parasthesias at night in both hands and sometimes feet and legs - even occasionally in the lady area after sitting!
  2. Legendrew

    Legendrew Content team

    Messages:
    534
    Likes:
    686
    UK
    I've come across this described as a symptom of B12 deficiency/Pernicious Anemia, could be worthwhile testing B12 as it's a fairly standard test. It's also a symptom of diseases such as MS but I'd have thought other symptoms would accompany this to indicate that was the cause. Calcium might also be worth testing among other minerals as both a high and low calcium level can be associated with parasthesias. I've suffered with this in the past simply as a result of using a different toothpaste which irritated my tongue.
    justy likes this.
  3. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,984
    Queens, NY
    Have you recently checked your blood glucose level? I have had these symptoms for a while now and my GP has ignored it. (usual for ME patients)
    I was recently diagnosed with diabetes and put on medication. When I looked up symptoms of diabetes, these appeared on the list.
    justy likes this.
  4. justy

    justy Senior Member

    Messages:
    2,495
    Likes:
    2,370
    U.K
    have been tested and checked for b12 over the past few years. Had low normal and did b12 injections daily for 18 months - blood b12 now very high (over 2,000) so I think this unlikely.

    calcium always been ok as well although not had any blood tests recently as cant be bothered with traipsing to Gp and back for nothing.

    As for MS - I also have had severe eye pain that lasted for months on more than one occasion - severe muscle spasms/flinging out of arms/legs that is still on going and hosts of other neurological symptoms (burning patches on skin, cognitive issues etc etc) but have never been tested for MS.

    To be honest I cant deal with the NHS nyomre - they have been appaling in their lack of investigation and treatment. Have waited 16 months for an apt with rheumy to be told when I rung up that I had been taken off the list recently - no one knows why and I was an URGENT referral. My GP is sweet but completey useless in every way.

    Not changed toothpaste in years - thanks for reply
  5. justy

    justy Senior Member

    Messages:
    2,495
    Likes:
    2,370
    U.K
    As I said above, no bloods for a while - but always ok in past apart from anemia - I wonder if this could be another symptom of that? I honestly cant cope with going to the GP evrytime I get a new symptom - they already don't do anything apart from keep repeating the same standard blood tests.

    As you say ALL symptoms even new ones are ignored of they think you have M.E. I have been told I have M.E with no differential diagnoses ever being sought.
  6. Nielk

    Nielk

    Messages:
    5,196
    Likes:
    4,984
    Queens, NY
    Do you feel thirsty a lot?
  7. justy

    justy Senior Member

    Messages:
    2,495
    Likes:
    2,370
    U.K
    @Nielk hmm, not really, thirst about the same as normal
    Nielk likes this.
  8. Helen

    Helen Senior Member

    Messages:
    475
    Likes:
    421
    The serum B12 isn´t a valid test unfortunately. B12 therapy (MeCbl injections) , with or without folates, has been a treatment , given to ME/CFS patients by some doctors, for more than twenty years in Sweden. Many of us on B12 injections must have a serum value around 4500 to ensure that we aren´t deficient. What about your serum ferritine and other labtests for iron? If low, that could also be a sign of B12 deficiency. Homocysteine? Did you have a 23andme test? If you haven´t got a good explanation to your deficiency once, I think you might well still need B12 and forever.
    Last edited: Mar 14, 2014
    NK17 and justy like this.
  9. lansbergen

    lansbergen Senior Member

    Messages:
    1,036
    Likes:
    498
    Does the tingling feel like when the blood starts running again after a numb limb or does it feel like something is bursting like a soapbubble?
  10. justy

    justy Senior Member

    Messages:
    2,495
    Likes:
    2,370
    U.K
    Hmm not soap bubbles - more like burning/ blood running again, its mild and then feels stronger for a bit. It feels like it has a taste - but I cant taste it (so weird to describe!)

    I think I might dig out my needles from the loft and the rest of the MB12 I still have left (been wrapped in tinfoil so should still be ok - managed to keep it in the dark) and try the injections again.
  11. philpot

    philpot

    Messages:
    48
    Likes:
    69
    UK
    I have had the tingling on the tip of the tongue, but only on rare occasions. I also get severe eye pain occassionally but again this seems to come and go. I did have checks for MS but was told I was clear. "I honestly can't cope with going to the GP evrytime I get a new symptom." I understand that point because else I would be better to qualify as a doctor and talk to myself because I would otherwise be camped out at the docs.

    Many things come and go over different periods and which in itself is a pain. I often ask the doctors if this is this one is a symptom of getting older, and say 'if it is just tell me and I will be happy and go away'. Generally I keep notes and then when I feel particularly bad I go in with a list of what is happening and what did happen.....however with the 10 minute time allocated it is rather difficult.

    Interestingly another symptom that has just arrived over the last week is alike an very quiet alarm going off in my left ear, I actually thought it was a distant alarm somewhere but no it's definitely in my left ear.

    Regards.
    justy likes this.
  12. rosie26

    rosie26 Senior Member

    Messages:
    989
    Likes:
    1,183
    NZ
    I get tingling and a numb feeling along my lower left lip and a little bit of the tongue, but I have had that ever since I was about 19 years old when I had a bottom wisdom tooth dug out. The dentist must have severed a nerve because I felt it ping and I was numb for three weeks after that. I got feeling back but I think there is long lasting damage there.

    I get tingling also elsewhere on the body, up the sides of my face and head, arms, feet. Odd stabbing pains. There's a really regular one that happens to my big toe, it's like someone has jabbed a needle in. I don't know what it is all about. I think the nerves are inflamed by ME?

    lol also Justy, I get the numb bottom too. I never really enjoyed going to the movies years ago because of that. Half way through the movie you would think I had ants in my pants arrgh really uncomfortable and sore.
    justy likes this.
  13. PNR2008

    PNR2008 Senior Member

    Messages:
    423
    Likes:
    642
    OH USA
    I used to get tongue tingling on one side before a migraine from the tip from age 11. After CFS age 38 I got the numbness in both legs starting from the feet, ankles, calves, thighs all the way up for about 2 years but went away. I'll occasionally get patches of numbness on my feet or around the ankles one side at a time.
    justy likes this.

See more popular forum discussions.

Share This Page