Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Pain swallowing

Discussion in 'Pain and Inflammation' started by starlily88, Apr 15, 2018.

  1. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    I have pain upon swallowing for last 4 weeks along with high fever.
    I have pain on right side of "throat" above my collarbone, below my voice box.
    Also right below adam's apple.
    At night I feel like I don't have enough oxygen - like I am being constricted around throat.

    I went to Internist who said it was muscular, that I had nothing wrong with throat.
    I went to Endocrinologist. Wanted me to do Radioactive Scan of thyroid - which I already know I have
    subacute thyroiditis so don't want to repeat.
    Went to Urgent care past Friday - I had 99,9 degrees temperature at 9.30 AM, so they did Flu swab and
    strep swab - negative. Said to take antibiotic.

    No blood tests from all three doctors. Not getting better.
    Starlily88
    PS at a loss of what I have or how to get rid of this apparent infection
     
  2. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    306
    Likes:
    873
    If you have dysautonomia issues (such as POTS or muscle weakness), your throat issue might be similar to our daughter's.

    When she gets ill or sore throats, she gets vocal cord and diaphragm paresis. At the worst of times, it's been tough for her muscles to swallow and at other times to get enough oxygen in or to cough up mucus.

    You should look for a laryngologist. Laryngology is a subspecialty within otolaryngology (ear, nose, and throat) that deals with illnesses and injuries of the larynx, often called the voice box.

    Having muscle weakness in the throat is very concerning. People die from this. I had a friend's mother who was in the hospital and they didn't notice that she was having trouble swallowing and her spit was going down her throat into her lungs and she died from the related lung infection.

    Here is an article on vocal cord paresis. While, they talk about physical therapy and surgery in most articles related to this issue - that was not what helped our daughter. With our muscle weakness issues being intermittent (dysautonomia), surgery without first giving it time to see if it would correct itself would have been a big mistake. Also, since our issues are due to Mitochondrial Disease, any overuse of a muscle will make symptoms worse. Therefore, therapy (would have made her's worse). Our course of action was for her to stop using those muscles, rest, make sure it didn't get worse (turn into an emergency situation where she couldn't breathe), and follow the protocol of rest, pacing, and mito cocktail with ubiquinol.
    http://www.entnet.org/content/vocal-cord-paralysis

    For several years she was hospitalized off and on with severe throat and lung infections. It wasn't until she had 6 centimeter nodules in her lungs and they were looking at her for possible cancer in her teens that we got closer to figuring it out. It turned out that the combination of low energy in her throat cells due to mitochondrial disease plus her overuse of vocal cords and diaphragm with singing (choir, school, shows) brought on vocal cord and diaphragm paresis. She stopped singing and also private lessons. We learned to treat throat infections and coughs immediately and take each seriously. We've had no more hospitalizations for her since. Whereas in the years prior she was regularly hospitalized for this.

    One of her first issues the doctors didn't pick up on was years earlier when she had sore throats and low fevers for almost an entire school year. She had several strep tests in the doctors office that year that came out negative. It ends up she had the zoonotic form of strep. That doesn't get picked up on the quick office strep tests. It must be sent out. Most people get rid of the zoonotic form of strep instantly. We now know that with her weakness in the area, that she has trouble with infections in her throat and lungs and that's why she couldn't throw off the zoonotic strep without medication.
     
    alkt likes this.
  3. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    I do have autonomic dysfunction and most of my life I got polyps on my vocal chords with severe sinus infections. The polyps concerned my ENT at Johns Hopkins a lot.

    Thanks for your input. My ENT retired so I don't have one.
    My Endocrinologist thinks this is a more severe form of Subacute thyroiditis - which I have had for years.
    I think this is something much more serious. My thyroid never interfered with my breathing or produced a cough that seems hidden deep down below my voice box - and if it comes up, I can't breathe.

    I have tried my inhaler - I don't know if I have asthma - but my ENDO did think when weather got cold, and I had trouble breathing - that I needed an inhaler - so I have only used it a few times.
    It is not helping me at all to get oxygen now.

    To get anyone to do the simple strep test took me 3 doctors to get it done - so finding a dr that would send it out for a zoonotic form of strep seems impossible.
    My frustration is that going to 3 very top drs got me absolutely nowhere - which is normal for all the strange diseases I have - but this seems like an infection in my voice box, or larynx - so thanks for your input.
     
    Last edited by a moderator: Apr 16, 2018 at 6:12 AM
    BeautifulDay likes this.
  4. 5150

    5150 Senior Member

    Messages:
    331
    Likes:
    237
    Sorry to hear that this is a big problem for you. Not really familiar with a "zoonotic form of strep", but presume from word origin, that it means the original source was an animal = zoonosis. Is this right? 'How to avoid it' seems important . Do you have any info about it? If I am not correct, please let me know. Thanks!

    Best hopes that you can get on top of this problem.
     
    BeautifulDay likes this.
  5. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    Thanks so much for your support 5150 (like your football avatar!). I doubt I have zoonotic strep. Research shows dogs carry it, can lick you, you get it. Dogs can die from it in 24 hours.

    My problem is terrible pain past my voice box and larynx on bottom of throat, where one can feel it move when swallowing. Even without swallowing this area feels like a hammer was taken to it.
    Additionally It feels like I am being strangled or constricted around my neck - so strange, but it hurts a lot, and won't go away - even with anti-biotics and steroids.

    Out of 3 doctors I saw who know me well, none have a clue, and really don't take it seriously.
    It feels almost life threatening to me - but when one can't get enough oxygen or it feels like that - one tends to get
    anxious which makes this much worse. If I am the same this Wednesday I am going to the ER, and hope to be admitted - I think I need blood work, lung x-ray, -ray, oxygen levels etc. I have had no blood work, no tests, nothing.
     
    Last edited by a moderator: Apr 16, 2018 at 6:13 AM
    BeautifulDay likes this.
  6. 5150

    5150 Senior Member

    Messages:
    331
    Likes:
    237
    Hi Starlilly88

    My wife has a very similar condition. She went to an E N T specialist, who then sent her on to an allergist/immunologist. Get going on something soon,ok? These are serious symptoms.

    Best to you.
     
    BeautifulDay likes this.
  7. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    306
    Likes:
    873
    Good morning @starlily88
    Since strep tests are more of a general physicians everyday, if you go to a general doc and ask for the regular strep that gets sent out (not quick test), they shouldn't turn you down. The throat specialists should be able to do it too.

    You might also want to look into John Hopkins Voice Center which sees "patients with voice, swallowing and airway disorders."

    Some of the conditions they diagnose and treat include:
    Dysphagia (Swallowing Disorder)
    Laryngitis
    Laryngotracheal Stenosis
    Muscle tension dysphonia
    Phonotrauma (Cysts, Polyps and Nodules)
    Presbylaryngis (Vocal Cord Atrophy)
    Recurrent respiratory papillomatosis
    Vocal cord cancer
    Vocal cord dysfunction
    Vocal Cord Immobility (Vocal Cord Paralysis)
    Voice and Swallowing Impact from Neurologic Disorders
    Other throat conditions

    https://www.hopkinsmedicine.org/otolaryngology/specialty_areas/voice_center/index.html
     
  8. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    306
    Likes:
    873
    Good morning @5150
    I really just brought up the zoonotic form of strep as an example. It's important to rule it out, and get treated if there is an issue -- but I really brought it up more as an example of how vocal cord paresis can result in people picking up things that most people can easily get over without a doctor's visit.

    Our daughter who had the zoonotic form of strep was never around many animals. Avoiding animals (her preference), didn't help her avoid the infection since she had this underlying condition we didn't know about.
     
  9. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    306
    Likes:
    873
    @starlily88 Does it feel like your muscles are not working correctly? Have you choked on anything lately that usually wouldn't cause you an issue? Is your voice getting deeper or huskier?
     
  10. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    Thanks so much 5150. Upon more research I saw that people with my symptoms went to ENT's like
    your wife did. I was quite lucky to get appointment with ENT I last saw in 2015 due to a sudden cancellation.
    On Wednesday 4/18 I will see him.

    Noticed he specializes in swallowing problems, thyroid gland among others.

    If you don't mind sharing or sending private message - could you say if your wife's problem got resolved?
    I am allergic to a few things like shrimp/iodine (anaphylatic shock) but was tested by allergist extensively years ago, and no hives appeared - still can't have shrimp or do contrasts in scans.

    Thanks again for your support - I am scared, and hearing from you and others does make me feel better.
     
    BeautifulDay likes this.
  11. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD

    I realized I had to see an ENT - mine was downtown at Hopkins, and took care of me for way over 25 years. No one could replace him.

    He sent me to another Hopkins ENT - when he wanted me to have surgery on my sinuses. He trained 10 of his former residents to do a special operation on people like me - with so many repeated infections.

    I called this ENT today - and luckily someone had just cancelled. So will see him on Wednesday 4/18/18!
    He does specialize in swallowing disorders, breathing problems, thyroid gland, laryngitis, vocal chords, and he did Hopkins medical/residency.

    I am not so fond of him - which is why I hesitated to call him - he is not the caring type, bit of arrogance, comes from a country where women are not valued. I stopped seeing him 3 years ago.

    Thanks for all your help. Thanks for explaining the zoonotic strep - interesting never knew this.
    So I see how if one gets vocal paresis - one could get this unknowingly.

    Normally in the spring until 6 years ago - I would get laryngitis.
    I only felt it thicken up one day, assumed I'd loose voice but did not.

    I do feel like I have huge lump when I swallow, and feel like my throat is 1/2 the size it should be, perhaps from inflammation. I started on my steroids - hoping this would help - only on 4th day of 12 days!

    Let you know what the ENT says. If no satisfaction will try Voice Center, and try to get in emergency visit.
    The wait for anyone at Hopkins is very long - unless it is emergency, which is only time I go there.
    Starlily88
     
    BeautifulDay likes this.
  12. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    I found out today that I have anemia and my thyroid level is low - 0.125 (range is 0.450 - 4.500). Doesn't seem too low - but the dr only ran a TSH and T4.
    Going to ENT tomorrow for checkup on my voice box, etc. Friday new internist, hopefully will order thyroid test panel.
    Without running Thyroid antibodies along with panel test - TSH and T4 are useless.
    Apparently most drs seem to resist testing patients - yet my best friend (male) who I sent to my Endocrinologist was tested full thyroid panel right away!

    Thanks Starllily88
     
    BeautifulDay likes this.
  13. 5150

    5150 Senior Member

    Messages:
    331
    Likes:
    237
    @starlily88
    -----------------------------------------------------------------------------------------------------------------------
    Sorry I had to be away a while.
    Yes, of course I am happy to share the general situation.
    She gets into a severe coughing spasm, as a past smoker(8 months smoke-free now), which starts with multiple sneezes, bad eye-watering allergic type reaction, has to 'hold her throat' while coughing, and the allergist Dr. has her on a steroid inhaler for urgent need; a regular inhaler for less severe; and she is starting allergy injections for the almost 100% allergies to which she was sensitive / via 'scratch testing'. I think it scares me more than her !

    She is a difficult person to get to see a doctor, so I'm trying to get this situation looked at while she's not feeling too well. Not so simple, and I'm seeing how some persons can be "a bad patient", but at least the allergy testing is moving forward. With you, it may be that you are beyond where she is. I can't be sure, as you know. But the description you gave sounds pretty close to what I see / except she does not mention the type of pain that you describe.

    So basically I will say her situation is not yet resolved, but we are moving forward on it. I'm hoping your thyroid can be managed. That particular symptom in itself is difficult, and the additional things you have going on are not to be taken lightly. So good for you, that you are taking this on and dealing with each symptom. What else can be done?

    I would still direct any more questions to Dr. Jonathan Edwards here on this site. He is very straight forward with questions, and as he is a PR member, I know he will be pleased to help you.
     
    BeautifulDay and starlily88 like this.
  14. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    Thanks so much for getting back to me! Glad you got your wife to allergist, and she is on various inhalers.
    Sorry she reacted to all the scratch testing.

    Have now been to my Internist, Endocrinologist, Urgent Care, and ENT today. All said different things.
    Most excited to see my ENT today. He did extensive scoping down throat to voice box, larynx. Plus he palpitated my thyroid.

    ENT doc said my sinuses, throat, voice box/chords, etc all looked good. It was a thorough exam, lots of questions. He said with all the autoimmune disorders I have - they can easily contribute havoc along with a virus component. He wanted me to finish steroids, follow up with Endo - if still not OK - go to my GI for Endoscopy.

    Seeing brand new Internist next week - want to get lung x-ray, blood work..........
    I am hoping that after 12 days - the steroids will do the trick. Today was my best day.
    Starlily88
     
    BeautifulDay likes this.
  15. 5150

    5150 Senior Member

    Messages:
    331
    Likes:
    237
    wow, you are hitting it hard right now! Since this is really about your story, I hope you can keep us informed re how all the testing & work goes. I will do the same re how it goes for my wife; maybe we can reach a better conclusion by continuing to compare & share. Thanks for the details you put in. All sounds good. I was most relieved to hear the voice , throat , & thyroid are ok. and yes, keep on looking, as long as you can afford it : )
     
    BeautifulDay likes this.
  16. starlily88

    starlily88 Senior Member

    Messages:
    120
    Likes:
    120
    Baltimore MD
    Thanks for your continuing support. I did get results on TSH and T4 test from Urgent care. I do have anemia, which I knew - but I need an iron infusion now ASAP. This wreck's one's thyroid btw.

    Pretty low on TSH - so I need a full thryoid test panel - which all drs including ENDO's are so resistant to run. Found online Quest lab which will run this with no script but is expensive but may be worth it.

    An unlikely effect of taking Prednisone for me - is reduction of anxiety, positive outlook on life, brain fog gone,
    can concentrate, read book, did hours of cooking, cleaning, etc - haven't done in forever. The steroid temporarily helps my adrenals (which are fatigued), helps my thyroid work, and suppresses my over active immune system which is source of my inflammation - so all my nerve overstimulation itch/pain down 70 %, 1st happy days and joy I have felt in so long. My allergies under control now - unfortunately this is temporary, steroid use bad to body past short term.

    Will try to find infectious disease or immunoligist at Hopkins to help me mimic this without steroids.
    Starlily88
     
    BeautifulDay likes this.

See more popular forum discussions.

Share This Page