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    Old 05-04-2014, 07:05 PM   #31
    checkers10
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    Re: Odd symptoms

    No speech problems yet but I can see how it could happen with a swollen tongue...Have you held your tongue up and looked underneath? I have swelling under the jaw line as well...I had an ultrasound on it in Feb. but I feel as though it has gotten worse...Have an apt with a surgeon tomorrow to see if he can Biopsy the thing in my neck or tell me if its acid....stay positive....I guess there is no use worrying :/

     
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    Old 05-04-2014, 08:36 PM   #32
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    Re: Odd symptoms

    The enlarged scalloped edge tongue is characteristic of hypothyroidism, so thyroid testing is essential. The other stuff sounds like autoimmune disorders. Dark patches on skin and gums can be signs of Addison's disease, adrenal insufficiency, which makes one very tired, low BP, electrolyte disturbances with low sodium and high potassium, poor appetite, weight loss, sometimes diarrhea. Requires a serum cortisol level done ideally at 8:00AM and 4 PM, as it varies throughout day. No one should be chalking these symptoms up to anxiety. They don't know what it is, so that is the default answer. Infuriating! Anyway, I would insist on an ANA and any other test you find through your own research to make sense to you. Many patients end up figuring out their problems themselves, and guiding their Drs to the correct diagnosis. I don't say this in a derogatory way, but the human body is so complex, and health problems can be so puzzling, it takes a team to figure it out sometimes, and you are part of the team. So go for it, and be assertive!

    Last edited by ladybud; 05-04-2014 at 08:38 PM. Reason: clarification

     
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    Old 05-05-2014, 12:08 AM   #33
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    Re: Odd symptoms

    Ladybud thank you for helping us. I understand how confusing it must be from the doctors perspective as well. I know when I'm researching my symptoms there are many things that pop up and our very scary! Which made me more anxious so I stopped researching and now I'm just journaling my symptoms and taking your guys advice hope everyone is doing good and not getting worse. I want to keep everyone updated and want to know how everyone is doing. I like the support and connections we have been making good night!

     
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    Old 05-08-2014, 07:05 AM   #34
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    Re: Odd symptoms

    What is an ANA?

     
    Old 05-08-2014, 08:31 AM   #35
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    Re: Odd symptoms

    Checkers, ANA is antinuclear antibody. It's best viewed as a "threshold test" because it may be positive in many conditions across multiple specialties. Therefore, alone, in & of itself, it isn't diagnostic of anything. But if it comes back positive, doctors then know to run more specific tests for ANA "subtypes".

    Examples of conditions in which it's positive (in varying percentages): lupus, Sjogren's, antiphospholipid syndrome, Rheumatoid Arthritis, MCTD, UCTD, Scleroderma, Alopecia areata, Celiac, Ulcerative Colitis, Crohn's disease, Autoimmune hepatitis, Diabetes Type 1, Addison's, Graves' disease, Hashimoto's thyroiditis (hypothyroidism), Myositis, Dermatomyositis, Multiple sclerosis, Mystehia gravis, Idiopathic thrombocytopenic purpura, Psoriasis, Vitiligo, and Cancer.[List not exhaustive.]

    Also, it may be positive due to a bacterial or viral infection, or due to a family tendency. Best wishes.

     
    Old 05-08-2014, 10:50 AM   #36
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    Re: Odd symptoms

    Well thank you vee! I went to the doctor and he did an ice pack test on my left eye and said he suspects myasthenia gravis and is referring me to a neurologist. I am pretty freaked out and just don't know what to expect. I asked if it could be als since I've been having stiff right foot and leg and my joints are very loose :/ but I know pregnancy and breast feeding postpartum hormones could cause loose joints. I don't really know what to think and I'm just really terrified of the outcome :/ we may not be able to leave this base because North Dakota where we were suppose to be stationed may not have the soeacialist close by. Any thoughts or encouraging words hope all is well with everyone. I was also thinking.. Would there be a reason for cartiledge to waste away? The ent said I had a very deviated septum which I didn't have before.. And my ring finger and middle fingers on both hands are very close together while both pinky and pointer fingers are farther apart.. Ugh. I'm hoping things won't look too bad at my neuro apt :/ should I also still be breast feeding? Sorry for bring so down and negative today . Update you all soon

     
    Old 05-08-2014, 11:06 AM   #37
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    Re: Odd symptoms

    You asked about an ANA, and I'm wondering if one was done for you. If so, do you have results yet? I am glad Dr. is sending you to neuro to rule out myasthenia gravis. If you do have it, it is treatable with medications that can manage the symptoms, but I think there is more to this, so the rheum evaluation is important too. I don't think your breast feedling is hurting anything, other than it is a bit of energy drain on you, but as long as you are eating and drinking well, your baby is benefitting. Do take your needs into account though as far as deciding when best to wean. Glad you are getting somewhere with this process!

     
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    Old 05-08-2014, 11:47 AM   #38
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    Re: Odd symptoms

    Thanks Ladybud. And I think my doctor wants me to see the neuro first just because my husband is getting orders soon to leave. And that may not happen if I do get this diagnoses. Can I ask the neurologist to get an Ana test done? I knew I was forgetting something today :/ also, I don't really have anyone here to watch my children, are children allowed to be at a neuro apt? Anymore suggestions on what other things are possible besides myesthenia? I appreciate your help, thank you so much.

     
    Old 05-08-2014, 02:40 PM   #39
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    Re: Odd symptoms

    Yes your neuro could certainly run an ANA test. He will likely be running blood tests to check for acetylcholine receptor antibodies anyway, to evaluate the MG possibility. Sometimes people have more than one autoimmune disorder, and the MG could be present along with something else, such as lupus, thyroid problems or Sjogren's. If the ANA is positive, I think the neuro will refer you to a rheum and continue to check out or treat your neuro related symptoms. I hope your husband gets at least a delay in his orders until you know what the situation is. He should probably talk to someone now to get that done, so he can be with you for support and to help with the kids. You can take the kids with you, if they can occupy themselves for a short while while he does your history and exam. A list of all your symptoms written down would be a help in the history taking process.

     
    Old 05-11-2014, 07:34 AM   #40
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    Re: Odd symptoms

    Ladybud,

    Yes I told my husband this and he is definitely going to be there for support. I know I will need it specially for testing. I've been thinking... The newest thing that I have found is the bone or cartiledge in my ear on my right ear can be moved/ popped out of its place. The round area before the ear hole if you know what I mean.. Where it is visible, if I push it from the back of my ear it pops out of place and hurts.. And yesterday I woke up from sleeping on my left side and my ear was numb! Yes this has happened a few times. Then, my right arm I was sleeping with it layed just above my head and I woke up to it being numb and floppy! I remember this happening to me in the past as well but never thought of it. Growing up I also had very bad cramps where my hand or foot would curl up and wouldn't open, I remember that in high school. Also, I don't believe MG has anything to do with muscle spasms, or speech issues.. Which I find pretty odd. I think also the cartiledge is gone in both hands between my middle and ring fingers on both hands. Well just wanted to update a bit to see if anyone sees any familiar symptoms they have or know of. Thank you Ladybud and everyone for your help and support hope everyone has a wonderful Mother's Day!

     
    Old 05-11-2014, 07:47 AM   #41
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    Re: Odd symptoms

    I should also say the indentions on my tongue are at the front under my tongue. And also scalloped at times on the sides. My ent appointment us this Tuesday. So I will ask about the ear and tongue thing. My speech, saying words with "th" sounds odd and sometimes I don't say the last or first letter of certain words.. Like remember I say member, I don't know though if that's just how I use to talk and now I'm paying too much attention to it, ya know. Possibly picking myself apart too much lol. I will get blood work results back as well.. Hopefully. I've also noticed that my skin is thinner.. I've never had soft skin and now I do and under my foot I use to have very thick hard skin and calluses and now its very thin. I think which makes it easy to bleed. I've noticed this when I get blood drawn at the tip of the needle I start bleeding. Ok that's all for now lol.

     
    Old 05-12-2014, 08:33 PM   #42
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    Re: Odd symptoms

    Hey Wondering and LadyBug Wondering, it sounds like you may be getting somewhere Went to a new doc today and they are running a ANA, RA and many more, she has also ordered a CT scan of my left flank..I have to go see a new ENT who I have heard is really good this Friday. Just wanted to update you (symptoms have not improved)....I have put on some weight which is a good thing...my Dr. wanted me to gain 10 lbs or so. I am eating super healthy and doing a lot of juicing. Hope you and Ladybug both are doing well and had wonderful a Mothers Day

     
    Old 05-12-2014, 08:54 PM   #43
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    Re: Odd symptoms

    Checkers! Glad to hear from you, and that is really great news. I'm hoping to see a neurologist soon let us know how everything turns out for you! My symptoms has not really improved either. I see my ent tomorrow in Boise and will get the blood test results. Will be updating you guys have a good one!

     
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    Old 05-14-2014, 08:17 PM   #44
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    Re: Odd symptoms

    Any news from your ENT? What does he think about your swollen tongue? I have to see a new ENT Friday.....I want a second opinion on the lump in my neck......My GP wants it biopsied (she is wondering if the tissues around it are not reacting to the lump...it has a hard spot in it) or if my swollen burning mouth is something different all together :/

     
    Old 05-16-2014, 08:56 AM   #45
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    Re: Odd symptoms

    Hi checkers!

    So get this... An hour before my appointment they cancel on me because my blood test results weren't in! Luckily I did not leave the house because it is quite a drive there. So I have the appointment rescheduled for this coming Tuesday again. My tongue is just always feeling huge with my bottom teeth indentions under the tip of my tongue... It use to feel swollen a lot and now its just always big feeling it sucks because I feel like my speech is affected yet no one else seems to notice but me. My neuro still has not called to make an appointment since I've given the referral :/ so we will see what happens on Tuesday let me know what they say. Sorry this took so long to reply.. Good luck! Hope things go better for ya this apt.

     
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