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Newly diagnosed & scared out of my mind

Posted , 9 users are following.

Hayhue
Hayhue

Hey everyone. I'm new here as I couldn't necessarily find anyone with my symptoms so I decided to create one of my own.

Some background info on me is I'm 28 y/o female. Recently diagnosed w hypothyroid. I also have polycystic ovarian syndrome which messes with my insulin but I am not on any medications and do not have diabetes (though I get hypoglycemia). I've had chronic vertigo since 2004 with unknown cause (spent 7 years in and out of doctors to no avail). I am also overweight.

I'm going to try to keep it short:

Last August I was out having some drinks (which I used to do about 2-4 days a week) when my body suddenly felt extremely heavy. I quit drinking and went home where I sobered. After that, I started having random vertigo spells where it felt like I was passing out. Everything would spin and go black, lasting a second or two. As time passed, legs started feeling very heavy where it felt hard to walk. Kept getting electrical shock feelings in my head I call "brain zaps". I would get pain behind my right eye with sharp pains in my temple at different times as well - lasted a few seconds then go away. Finally went to doctor around November where they checked fasting sugar, CBC, etc. and found low thyroid. Also had echo, wore holter for 24 hrs, x-ray of chest, and EKG - all normal.

Fast forward to today and I now have burning in one area on back of my head that feels better with cold compress. Some tinnitus. Jaw will get extremely tight as if it's hard to open or chew and makes head feel heavy (I grind my teeth when anxious during day and at night). I think a swollen lymphnode under right arm (having that checked Tues by PCP). As of Monday, I developed desensitization (that comes and goes) in my cheeks, chin, and tip of tongue. I also have a metallic? taste in my mouth that comes and goes (can last hours or for a day); Upper back burning and soreness (like I was lifting something heavy) chest soreness/heaviness? (Feels same as back); and tingling forearms. Went to 2 different ER's and was told peripheral neuropathy. Was given Neurontin and told to go to neurologist but cannot get in for 3 more weeks and haven't tried Neurontin yet due to fear of it increasing my vertigo.

I'm googling information because I can't find anyone with this in my personal life. The doctors just keep telling me to go to a neurologist. I can't get in to see one for months (I've currently been waiting 2 months for this appointment and placed on high priority waiting list) and everything online is pointing to some kind of neuropathy due to underlying cancer.

I am scared to death. Has anyone else ever experienced this with their neuropathy? It's been coming on for months it seems (symptoms starting last August) but now is getting worse.

I'm emotionally exhausted and I cry all the time from being worried. I don't even want to get out of bed anymore.

Can anyone please help? Thank you.

0 likes, 13 replies

13 Replies

  • twinky
    twinky Hayhue

    Posted

    I've had similar issues & symptoms, I also have pcos, thyroid & adrenal probs & b12 deficiency. I recently did a 23&me test & would advise you to think about that. I've found out I have lots of genetic mutations & having been managing my issues wrong. Now I know the cause of my issues & am working with a functional doctor to address them based on my genetics.
    • Hayhue
      Hayhue twinky

      Posted

      That's interesting I'll bring it up to my doctor! Didn't think of that. Thank you!
  • ptolemy
    ptolemy Hayhue

    Posted

    Metallic taste could be due to medications if you are taking any or possibly gum disease or just nothing. I believe one in ten women have pcos. It is quite common and tends to cause weight gain. What is your diet like? Do you drink a lot of alcohol?
    • Hayhue
      Hayhue ptolemy

      Posted

      Thank you for replying!

      I'm only on levothyroxine for the thyroid but this taste just started a week and a half ago. I quit drinking alcohol that same day. Anytime I drink it now I get the same feelings so I stop. I end up sweating profusely and feeling heavy and out of it.

      My diet isn't bad but it's not necessarily good. I don't eat organic or gluten free or anything like that.

  • shelbyrae
    shelbyrae Hayhue

    Posted

    Hayhue,

    Did ER test you for peripheral neuropathy or are they just diagnosing you based on your symptoms??? I have had some of your symptoms as well and totally feel your pain... So scary... I am having skin biopsy on Wednesday to test for small fiber neuropathy and had spinal fusion surgery last Monday because some doctors believed symptoms were coming from severe disc compression on my spinal cord ... Just curious how they diagnosed you with peripheral neuropathy let me know & hang in there!!!

    • Hayhue
      Hayhue shelbyrae

      Posted

      Thank you for replying! So much relief knowing I'm not alone!

      The ER doc basically told me there was nothing he could do I would have to see a neurologist. He ran no tests other than to make sure I wasn't having a stroke. He did sit down and explain to me that the burning in my head is a nerve that would be causing my face n such to desensitize. He said a CT wouldn't help me, I would need an MRI. I already had one scheduled for Friday (just past) so I think that's why he didn't do one.

      The tongue numbing and repeated bad taste started the next day so I didn't get to ask him about that. The next day, though, I went to another ER and the doctor said the same and gave me Neurontin.

      I just had my CT Friday and am getting CBC & thyroid & everything else done tomorrow again because I go back to my PCP on Tuesday.

      With my upper back muscles and chest muscles so tight feeling, I'm starting to believe maybe it is in relation to my neck? I'm not sure what to think at this point.

  • aveline
    aveline Hayhue

    Posted

    Have you had your B12 checked? The symptoms sound far-flung, but if you search on the Pernicious Anaemia forums here, you'll see that it looks like many of the effects you can get from very low B12. 

    HUGS to you because you're suffering so much and the not knowing does make it worse!!

    My b12 deficient symtoms are fatigue, heavy legs, diziness (i have vertigo, too, though), neuropathy, shortness of breath, tinnitus...much of what you have. My thyroid is fine, no PCOS in my case (Do you have Hashimoto's?).  But, we share many of the other issues.

    twinky - that's fascinating! Thanks for sharing - maybe you can start a new thread and give us more details of what you had tested/found from the genetic work up. Glad you're getting relief or starting to now...!

     

    • Hayhue
      Hayhue aveline

      Posted

      Aw thank you so much!

      The waiting is the worst. I have 3 weeks to go until I see the neurologist and when you're sick, 3 weeks is forever. I just feel like I've been getting the run around as they keep telling me to have this test or that test then return in a month. I'm done doing that. I had that CT and called ASAP and got an appointment. I wasn't waiting another month. I've waited 9 already.

      I don't think I have hashimoto because they didn't mention it but I will ask about my B12! I knew it could cause some problems but I didn't know all of that!

    • twinky
      twinky aveline

      Posted

      I agree, they sound v like b12 deficiency symptoms.

      I found out that I have Mthfr, CBS & COMT mutations (amongst others) from my genetic testing, so my issues have all come on due to methylation problems & as I have this, my body doesn't detox well so I have high levels of copper & certain heavy metals.

      It started out as rumbling b12 deficiency, but I had nitrous oxide in childbirth which depleted that further & it flipped the methylation issues into overdrive. I then couldn't get rid of the excess copper after having my baby, I also had v elevated homoscyteine due to the CBS mutations which probably links in somewhere & puts pressure on other systems.

      The pcos, adrenal & thyroid issues have all

      Come on due to pressures from the methylation issues & metals build up. Low in zinc, magnesium etc, high in copper, sulphites too. Make sure you ask for the numbers from your tests, the ranges are big & you want to be 'optimal' not just skimming the bottom of normal with b12. Lots of people can't use swallowed tablets to correct it either & need sublinguals to bypass the gut & if you have certain mutations, you can only handle certain types of active b12, whereas others can worsen things & you need tests to check out if you are actually under or over methylating as the root cause of the deficiency & go from there. Also Google pyroluria which can sometimes be associated. There are lots of support forums on Facebook once you know what it is you are facing.

      Good luck!

  • faye70665
    faye70665 Hayhue

    Posted

    HI,I am new here also and had to respond because I have been

    Where you are.I have a lot of spinal issues but some of your

    Symptoms match what I just went thru.My pain doctor found that

    I have serious arthritis of the neck.I was surprised this caused the

    Pains in my temple as well as the other issues.That is suppose to

    Be migrains from the arthritis.He added neurontin to my list of

    Meds.Like you,I waited 2 weeks to begin them.I finally took one

    And was able to sleep soundly thru the night.Headaches left right

    Away along with numbness and tingling.No more heavy feeling

    Either.I could hardly move my legs to walk at times and I am a

    Small woman aged 67.I do hope you can quit worrying as that

    Doesn't help.Good luck to you and my prayers.

  • celia80432
    celia80432 Hayhue

    Posted

    Hello Hayhue, I can only respond to what you said about your jaw. I have that & it's TMJ. You could look it up on the Internet & see if what it says about it is what you are experiencing.

    Sorry you are having such a hard time - try to wait it out until you see the neurologist.

    (When I was diagnosed with TMJ the dentist made something for me to wear on my bottom teeth at night to help me stop grinding my teeth. I also went through a stage of the metallic taste but it went away & I don't know what was causing it - maybe a medication I was on. I also have Lupus & am sick a lot as it affects all different parts of the body. It is depressing but I try to give it to God.)

    Take care, give your worries to God & you will be in my prayers.

  • jazzyanne
    jazzyanne Hayhue

    Posted

    hi have you had your vitamin bloods done vit d vit b12 and folate, plus have you had contrast mri's  also have you had your cortisol blood checked?
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