Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

immune related tests i should order for bilateral paresthesias...gloves?

Discussion in 'Immunological' started by waif, Oct 14, 2017.

  1. waif

    waif

    Messages:
    74
    Likes:
    21
    thanks, i feel a lot better. i go back to the hematologist on friday.

    do you have trouble reading on a computer? today i'm at work and my eyes are bone dry, really distracting..hard to work. i think i have at least one, maybe two, pingueculuems (sp) on my eyes..
     
  2. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    waif likes this.
  3. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    @waif and yes I have issues watching tv or computer screens. You blink less when doing so and if you have dry eyes (decreased tear production) to begin with then you get even dryer eyes. I was put on Restasis (immune suppressant eye drop) and told to use over the counter preservative-free (this is important) eye drops (doc recommended Systane Ultra). Both things have helped and if there id an autoimmune inflammtory process going on (ex: Sjogren's) with my eyes then the Restasis wil hopefully slow that down.
     
  4. waif

    waif

    Messages:
    74
    Likes:
    21
    thanks! weird, i was actually on restasis years ago..

    i'm not sure how much it helped long term though, it definitely didn't hurt. i have to run FLUX on my computer/cell phone or my eyes freak out too.

    "Sicca (dryness) symptoms are often overlooked in the primary care setting. Sicca is often the best clue to diagnosis. Yet many patients do not mention dryness to their providers, thinking it unimportant or unrelated to their other symptoms"

    yup. the worst case of DE i had..i would lie around with a warm washcloth on my eyes and sleep with that gel in, i think it's systane brand.
     
  5. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    @waif Restasis helps over the long-term. It's a drug that can basically be used the rest of your life. I guess it's common for people to stop using it far too early as they think don't think they feel any difference or they stop due to the burning it can cause not realizing that this burning will improve or go away after some months as the Restasis calms down the inflammation in the eye.

    I've been lucky in that I only experienced mild burning once in a while the first months I used it. I use one vial a day paying care not to touch the tip of the vial with my fingers or eye and store it in the fridge between doses. Eye doctor and pharmacists both told me I could do this.

    I do the same with the Systane Ultra single-use vials (only the single-use vials are preservative free) and store it in the fridge all day between uses. Otherwise the costs would be way too much for me. So far no problems. In regards to why you should only use preservative-free drops, I was told that if you use eye drops 4 or more times a day that with Sjogren's using drops that contain preservatives can damage the eye even more over the long-term.
     
    waif likes this.
  6. waif

    waif

    Messages:
    74
    Likes:
    21
    yes i took restasis....for awhile, the burning didn't bother me at all. i remember thinking it was a little pricey. but if my eyes ever reverted to as bad as they were a few years ago, i'd definitely try it again.

    systane ultra is awesome. i should run out and buy that. i don't remember putting it in the fridge but i bet that feels amazing.

    it's funny. today i was thinking i'm going to pretend you didn't tell me about errors in complement testing results when i see my hematologist on friday. it'll be the perfect excuse to go to an immunologist and he can re-order the tests.
     
    Last edited: Oct 17, 2017
  7. waif

    waif

    Messages:
    74
    Likes:
    21
    you know, i use kind of harsh creams on my face sometimes like tretinoin, aha, vitamin c hyaluronic acid serum...i don't intentionally put them near my eyes but i need to be more careful. also i cannot tolerate my contact lenses, only in my right eye for a few hours. not in my left. i shouldn't wear makeup either. i do very rarely with a ton of eyeshadow primer but i always wind up looking bloodshot afterwards.
     
  8. waif

    waif

    Messages:
    74
    Likes:
    21
    @TrixieStix wow, a coworker told me she actually got the lip biopsy years ago. i'm going to ask her about it, how large etc. it came back negative but i think her labs are leaning towards sjogren's now.
     
  9. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    Glad you have someone to ask about it. Yes a lip biopsy CANNOT rule out Sjogren's but although a doctor would likely not officially dx you with Sjogren's without meeting the diagnostic criteria they can still be strongly suspicious and still treat it. For example if you get skin punch biopsy done and it is positive for Small Fiber Neuropathy they may want to treat you in order to slow down/halt the nerve damage which means treating the underlying cause...which could be Sjogren's.
     
  10. waif

    waif

    Messages:
    74
    Likes:
    21
    she said the biopsy was easy and she had it done many years ago. she couldn't even tell where they took the sample so i'm leaning towards asking for it now, ESPECIALLY if my follow up complement test is low
     
    TrixieStix likes this.
  11. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    Do make sure to get tested for Small Fiber Neuropathy too. If it comes back positive it could affect diagnosis even if a lip biopsy is negative given your sicca symptoms. I've read in Sjogren's forums that it is important to have the lip biopsy done by a doctor (usually done by an ENT) who is experienced in doing them for Sjogren's. People shared experiences of having them done incorrectly which affected their diagnosis.


    "Min
    or salivary gland biopsy is done transorally and should include at least 3-4 glands. Minor salivary gland biopsy has 38-82% sensitivity and approximately 85-94% specificity for Sjögren syndrome."


    Thus why it can only rule it in but not rule it out. Below is a link to some good info from John Hopkins about Sjogren's lip biopsy.


    https://www.google.com/url?q=https:...mC18QFggaMAI&usg=AOvVaw0jiU1rQEbj218AqJ-IQ_J3
     
    waif likes this.
  12. waif

    waif

    Messages:
    74
    Likes:
    21
    the problems i've had with my neuropathy is that 24/7 my feet are NOT numb.
    i get neuropathy flares affecting my entire body but when i tell drs my feet aren't numb they tend to write off anything AI. it almost makes me want to lie so i can get more tests.
     
  13. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    Hmmm? Well I have severe Small Fiber Neuropathy in both my feet, legs and hands (half of my face as well) and I wouldn't explain it as numbness per say. My skin isn't numb and I can feel touch, pokes, etc. It's just slightly less sensitive to touch in certain spots. Like when the neurologist touches my left toe with a safety pin it's slightly less sharp feeling than it is when he does same to my right toe. Small Fiber Neuropathy's main symptom is pain and strange sensations (buzzing, tingling, like bug is crawling on me, feeling like little tiny bubbles are popping inside my foot and so on). My symptoms definitely flare at times and also they are improved at times. For example only during a flare do I get symptoms on my scalp.
     
    waif likes this.
  14. waif

    waif

    Messages:
    74
    Likes:
    21
    eeep, did yours start out like that? what were your first symptoms?

    ive never gotten bugs or bubbles but shooting pains (at its worst), fireworks, burning, swelling. right now i hate bending my arm bc it starts burning. its why im such a lazy typist

    that is so strange about your scalp! is your hair okay?
     
  15. waif

    waif

    Messages:
    74
    Likes:
    21
    a year before my hands went totally numb i was definitely stretching my brachial plexus, the symtpoms of "zingers and zappers" describes me 100%

    you get a jolt down your arm and then your arm/shoulder goes dead for a few days
     
  16. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    @waif here is a list of 20 of top 20 symptoms Small Fiber Neuropathy can cause

    1.tingling
    2.electric shocks
    3.numbness
    4.weakness
    5.heaviness of limbs
    6.inability to control movement of feet or hands
    7.burning sensations
    8.dizziness
    9.muscle cramps
    10.loss of feeling on light touch
    11.feeling like you have gloves or stockings on hands or feet
    12.difficulty with balance and loss of position sense
    13.inability to feel correct water temperature
    14.feeling of severe pain when anything touching the skin
    15.inability to feel normal pain
    16.loss of lower body sweating and increase in upper body abnormal sweating
    17.alternating diarrhea and constipation
    18.incontinence
    19.non-cardiac tachycardia
    20.breathing difficulties
     
  17. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    @waif now that you have mentioned your brachial plexus and descibed those symptoms alarm bells are going off in my head for possible "Thoracic Outlet Syndrome" Read about it and see if the symptoms sound familiar. It would be a good thing to rule out if you at all think it started when you did something to your brachial plexus.
     
    Last edited: Oct 19, 2017
  18. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    879
    @waif I have NTOS (neurogenic thoracic outlet syndrome) and it's actually why I initially became disabled 4 years ago. 4 years ago this month I had major surgery for it on my right side at Massachusetts General in Boston (I had to fly cross-country) as only a few surgeons in the US are experts in doing it.

    Fortunately most people who develop TOS do not need surgery. I am in a small % of TOS patients who develop the condition due to having been born with an extra set of ribs (cervical ribs) but still most people born cervical ribs don't go on to develop TOS. So I'm extra special ;)
     
    waif likes this.
  19. waif

    waif

    Messages:
    74
    Likes:
    21
    get out, i posted for years on neurotalk tos forums
    i have ntos too...my shoulders are "droopy", just making sure it's not something else. it's like once i developed ntos or whatever you want to call it, my entire body became hyper sensitive.
    omg! that's so horrible you have a cervical rib. I've read about so many different conditions causing chronic pain and for me that might be the most dreaded on my list. i assumed that if you had an extra rib it'd be vascular too, but i guess not. In my xray I thought my c7 looked a little long but I've had a lot of doctors look at it and not say anything, so I'm probably just paranoid.

    You're beyond special.

    my first rib or my c7??? thuds around quite a bit but only on my left side.
     
    Last edited: Oct 19, 2017
  20. waif

    waif

    Messages:
    74
    Likes:
    21
    my brachial plexus feels "scarred"..like there's a tourniquet sometimes on the side of my neck and i get the urge to yank my shoulder and my head in opposite directions, but i know that'll actually make it worse. propping a pillow under my right armpit helps. my body is really lopsided :(
     

See more popular forum discussions.

Share This Page