The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

has anyone had these symptoms

Discussion in 'Neurological/Neuro-sensory' started by jmcaines, Aug 29, 2016.

  1. jmcaines

    jmcaines

    Messages:
    7
    Likes:
    9
    I have been written off as nuts by my GP & the local ME/CFS clinic run by the NHS. Have been diagnosed with ME after seeing Dr Weir in London. Was recommended Dr Sharma who has out me on lots of different supplements which are very pricey & I feel I am gradually getting worse & worse. Does anyone have the following severe head symptoms......

    CRAWLING SENSATIONS
    TINGLING
    SNAPPING & CRUNCHING NOISES/SENSATIONS
    CONSTANT PRESSURE (like someone is squeezing my brain)
    INCAPACITATING BRAIN FOG
    CONSTANT LOUD TINNITUS
    Also feel difficulty with breathing & swallowing.

    Not feeling very confident in Dr Sharmas explanations of test results, costs rapidly increasing & his lack of patience. If anyone can recognise these symptoms or point me in a more positive direction I would be grateful.

    Many Thanks
    Janet
     
  2. *GG*

    *GG* Senior Member

    Messages:
    6,138
    Likes:
    4,734
    Concord, NH
    Yes, to most of those. Don't have difficulty breathing and swallowing, brain fog has been much better for years now, still have days where I am off. Pressure/tension is not limited to brain, body muscles as well.

    Diagnosed in 2005, had CFIDS/ME/CFS since Mono in May 2003.

    GG
     
    Last edited: Aug 29, 2016
    Mel9, MastBCrazy and jmcaines like this.
  3. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    Hi Janet @jmcaines

    Welcome to the forums. Plenty of people here will relate to the experience of the attitude from your Dr.

    The last symptom you list has been (thankfully) an extremely rare symptom for me but I do experience all the others.

    Regarding the tinnitus--I've had this for decades--I don't recall how I dealt with it early on--I thought everybody had this sound in their head. I think the brain does compensate over time so that the sound fades in the background as the brain attempts to disregard it.

    The crawling sensations may be amenable to consumption of Magnesium supplements. I use Mg malate. Just make sure if you decide to try it that it's a good quality and NOT Mg oxide which is not absorbed well. I grew up on scifi books and tv and have always likened the 'crawling' to the visuals of alien parasites under the skin.

    For me the tingling comes and goes. Over time it is less frequent (I say this then I get a bout of tingling). I usually associate this will tightness around the neck. You could try wearing a neck brace to see if this helps (not too expensive solution esp if it doesn't help)

    For brain fog: that has never really gone away. There are many threads of suggestions of things people have tried.
    CoQ10 is one supplement (should be soft gels not powder). If your head is feeling congested (not sinus) for temporary (and easy/cheap) help you could try an ice pack at the base of your neck. This is if the feeling is from an overheated brain. You'll still have brain fog issues (cognitive impairment) if that's part of your brain fog but a supplement might give some relief for that.

    There's lots of info here. If you have a problem locating anything just ask--PR people are a helpful bunch.
     
    Mel9 and jmcaines like this.
  4. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,405
    Vancouver, British Columbia
    Janet, I don't know how old you are but these symptoms also fit in with perimenopause. Been there - done that!
     
    jmcaines likes this.
  5. roxnhead

    roxnhead

    Messages:
    15
    Likes:
    21
    Magnesium supplements- have you RBC mag blood levels checked then get a quality supplement- Doctors best
     
    jmcaines likes this.
  6. Hip

    Hip Senior Member

    Messages:
    9,353
    Likes:
    14,651
    The virus that triggered my ME/CFS produced a lots of chronic skin crawling (pins and needles) for many years. Medically these are called paresthesias. The supplement benfotiamine, 150 mg to 300 mg taken twice a day, helped a great deal (out of hundreds of supplements I tried, it was the only one that worked).

    What expensive supplements have you been recommended by Dr Sharma (I take it you mean Dr Rajendra Sharma)?

    I found one of the cheapest places to buy supplements in the UK is www.healthmonthly.co.uk.


    When you say "constant pressure, like someone is squeezing my brain", do you feel an inflammatory feeling in your head? The virus I caught created a constant feeling if inflammation in my head (this was in part due to the the nasal and sinus inflammation it caused, and part due to a feeling of inflammation in the back of my head, by the nape of my neck).


    Jus before all your symptoms started, did you have any acute viral infection episodes, like a bad sore throat, flu-like illness or brief gastrointestinal illness?
     
    Last edited: Aug 30, 2016
    lauluce and jmcaines like this.
  7. jmcaines

    jmcaines

    Messages:
    7
    Likes:
    9

    Thank you for your reply, yes I was referring to Dr Rajendra Sharma have you had any dealings with him? Have paid out over £1000 for blood tests
    Im currently only taking Caprylic Acid, Berberine, Vit C, Magnesium, Zinc & a Pro-otic. He has also sent me out Glisodin, Pro - omnineuro, HPA-JA drops & some powders that I am yet to take. To be honest not feeling much of a positive effect In fact feel my symptoms are worsening
     
  8. Cheesus

    Cheesus Senior Member

    Messages:
    1,224
    Likes:
    5,482
    UK
    Can you be a little more descriptive? I have something that is along these lines that is one of my main symptoms, though I think what you're talking about could be interpreted a number of ways and I want to be clear on it.
     
  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    695
    Likes:
    2,291
    Most of the symptoms you describe might be caused by 'Sensory Neuropathies' and Sensory Phenomena, that would fit in with an ME/Autoimmune type presentation, and also undiagnosed Lyme disease or even forms of MS.

    If they are disabling symptoms affecting your daily function, especially pain, then it's not unwise to rule out neurological disorders and neuropathies.

    NHS can do the following with appropriate referral:
    1) Head MRI Scan, and possibly a Spinal MRI (neuro).
    2) EEG Brain wave assessment to rule out Epilepsy, although it is not fool proof.
    3) EMG - an unpleasant procedure in which you receive little electric shocks.

    Some NHS consultants may order the following, given enough leverage/evidence you have more than 'CFS' such as shooting nerve pain in feet, transient speech slurring/feeling unreal/other neuropsych symptoms not explained by a mental health condition, paroxysymal attacks of breathing difficulty, visual defects, confusion, etc.

    4) Rule out Myasthenia Gravis (Anti MAG/MUSK blood tests - not fool proof) + MS (Invasive Lumbar Puncture).
    5) A skin biopsy - cutting bits out of you, usually your foot for peripheral neuropathy that won't show on an EMG
    6) A batch of Autoimmune blood tests, available at Oxford, NHS or Mayo Clinic (USA) Dysautonomia panel
    7) QEEG Brain mapping (private, not on NHS).

    If you had 'pure' Ramsay definition ME, I would guess that from my suggestions above, the result would be:

    1) Normal or shows idiopathic white 'spots' (hyperintense signals) of unknown significance.
    2) Shows Drowsiness
    3) Normal
    4) Normal
    5) Possibly abnormal if you have shooting nerve pain, cranial neuropathy, facial numbness etc
    6) Possibly abnormal, probably a few will be low level positive, and the ME diagnosis stays
    7) Abnormal, buy NHS can't do this test.

    And that is the reason the NHS, prefer to label everyone as exercise phobic. Cheap, effective, tests are blocked and for 80% that was the correct choice. Problem is, when you're the other 25% who don't have 'CFS/ME'. but something different, or something additional you developed over time. Also 25% of millions of people with 'CFS/ME' diagnosed, is rather a lot of people to let suffer when they could have got a more accurate diagnosis.
     
    MastBCrazy and cfs6691 like this.
  10. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,288
    Likes:
    12,026
    U.K
    Wish the NHS had done these tests on me - I have lots of horrible neuro symtpoms and not even seen a neuro - last time I asked I was told 'you have seen enough consultants'. Great post BTW, I second the possibility of Lyme disease @jmcaines - the symptoms you describe are consistent with that and also possibly babesia, a lyme co infection that can cause breathing issues.

    Current NHS testing is not very reliable - especially if you were exposed a while ago and testing for babesia is even worse. You can test privately at Arminlabs - they have a website that's easy to navigate and can offer (free) advice.
     
    Research 1st likes this.
  11. jmcaines

    jmcaines

    Messages:
    7
    Likes:
    9
    My scalp is highly irritated and I get snapping ,crunching and ripping sensations in my head -food seems to cause it but I'm not sure and the more I get it the less I'm able to think and find the right words!
     
  12. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    I have some of those symptoms (crawling/tingling/brain fog that makes it impossible to function). I found magnesium ( magnesium oxide for slow release plus magnesium oil subdermaly and an Epsom salt bath once or twice a week) helped the crawling, although I do still get what I call "itch attacks" reasonably often still and this seems to be mostly on legs but can move around the body. Brain fog has been 90% controlled using vitamin b12.. I would say miraculously so. I take hydroxy/methyl subdermal oil for this although sublinguals worked well too.

    I hope you find something that works for you.
     
  13. jmcaines

    jmcaines

    Messages:
    7
    Likes:
    9
    Thankyou
     
  14. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    My me started with just that symptom, "pins and needles", then it progressed to all sorts of pareshesias all over the body before the arrival of to the "classic" ME symptoms. What is the virus you say that could be responsible for "pins and needles"? is it also related to other kinds of paresthesia?
     
  15. Hip

    Hip Senior Member

    Messages:
    9,353
    Likes:
    14,651
    My blood tests suggest the virus I caught might be coxsackievirus B4, since I had higher titers to that.
     
    lauluce likes this.
  16. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    I always wondered if higher titers for a pathogen mean that the infection is more severe than if you have lower titers. do you have any info about this? I've got higher igg titers for herpes simplex 1, for example, in the order of thousands
     
  17. Hip

    Hip Senior Member

    Messages:
    9,353
    Likes:
    14,651
    Yes, high titers are usually considered a good indication of a more active infection.
     
    lauluce likes this.
  18. lauluce

    lauluce as long as you manage to stay alive, there's hope

    Messages:
    394
    Likes:
    649
    argentina
    sorry to bother you, answer only if you have the time, do you know where should I look to find any text about this?
     
  19. Hip

    Hip Senior Member

    Messages:
    9,353
    Likes:
    14,651
    Unfortunately I don't know any good books on this subject, I have just learnt bits and pieces from reading this forum. Generally the rules are this:
    Sometimes though in certain diseases, you can have high antibodies without there being an active infections (because the immune system is switched on for no reason). So high antibodies do not prove with 100% certainly that you have an infection, but are a good indication of active infection.

    EBV antibody titer interpretations are more complex, and I don't really understand those.

    And for cytomegalovirus, Dr A Martin Lerner says that a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer. (Lerner says the IgM titer for CMV is inaccurate and insensitive.) The higher the CMV IgG titer, the greater the viral load. Ref: 1
     
    Last edited: Jan 20, 2017
    lauluce likes this.
  20. sinas

    sinas

    Messages:
    18
    Likes:
    6
    @jmcaines
    have you had a diagnosis since your posts? ..i share some of your symptoms. thank you.
    sinas
     

See more popular forum discussions.

Share This Page