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Michelle’s Fight Like a Girl Story (Grave’s Disease)

Light Blue Ribbon Grave's DiseaseIt all started with tingling in my right hand. I just assumed that it was from all of the heavy lifting. But as time went on, it went down my right arm. So then I thought ok, carpal tunnel, so I started wearing the braces and continued working. My right leg began to get heavy so I started slowing down a bit, doing light duty nursing work. I did that for a couple of weeks and then it happened right in the middle of a transfer – I lost grip of my patient. And I was in home care so I was alone. I had to hold her with my legs and use my hand to call for a nurse. I had to stand like that until the nurse got there so I didnt drop her. It worked.

After that, I knew something more than carpal tunnel was wrong so they pulled me out of work. It sucked. I had a series of tests done over a year’s period of time. The best the docters came up with was strained muscles so I had to go see a specialist. By this time I couldn’t talk or walk. I was just a week away from my Maker and didn’t know it. While at the specialist’s, they discovered myastenia gravis which is known as Grave’s disease, and you can die from it. People have. It’s a rare form of muscular dystrophy. So I had to undergo lots of exchanges, different pills, but they settled on steroids. I had to have surgery as well. I had my thymus gland removed. During the surgery, I almost died again so they had to put in a fast tube and while they were doing that my lungs collapsed twice so they had to pump them up slowly. It hurt a little. So I have scars, mental and physical, I can’t run, I lost my job and gained weight. But I can walk, talk, and go on living. It’s a bad one. I have my days but, in a way, I feel blessed. I can stay home and take care of our teenagers. Thank you.

Michelle
New York
Submitted 6-20-11

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

14 comments

  1. Hello,

    I’m very sorry for the troubling health issues you have experienced. However, Myastenia Gravis and Graves disease are two very different conditions. Graves disease is an abnormally high thyroid gland or ‘hyperthyroidism’ which is not fatal. I had Graves disease and was sucessfully treated for it.

    • I agree totally. I am a 53 yr. old nurse who was diagnosed with Graves disease when I was 30. I had a total Thyroidectomy with some parathyroids removed as well. I have been on medication (synthroid)ever since and feel great. In the beginning until they got the levels straightened out I did gain some weight but I had lost a lot of weight with the hyperthyroidism (Graves disease). This is a totally treatable disease. A lot of people opt to have no surgery and are treated with radioactive iodine. Myastenia Gravis is a neuro muscular disease and very different from Graves’s disease, usually treated with some type of steroids.

      • Hi my name is Tasha I was diagnosed with graves disease in February of 2013 it has been kind of a rough road trying to deal with everyday life and four kids. I have also been getting headaches almost everyday causing me to feel nauseated I was just wondering if anyone has any tips of advice on how to deal with graves on a daily basis any info will be greatly appreciated thank you so much

    • yOU CAN DIE FROM COMPLICATIONS OF GRAVES DISEASE. I JUST LOST MY BOYFRIEND HE HAD RADIOACTIVE IODINE TREATMENTS AND DIED OF HEART FAILURE 4 WEEKS LATER. WISH WE WOULD’VE KNOWN HOW SEVERE THE COMPLICATIONS COULD ACTUALLY BE

    • A
      Graves’ disease can be fatal. And just removing the thyroid does not cure you. It takes away the symptoms. Hopefully a Graves pt. has a doctor who can dose you correctly with a thyroid replacement medication. I had RAI therapy in the past and went into a thyroid storm. Now I have nodules which have calcified and thankfully are benign.( no cancer). My Graves is back, with many symptoms. My latest endo doc told me never remove the thyroid as it is an autoimmune disease. Once you have it, it is always present. Good luck to all of you. No matter which therapy you choose, I hope in all sincerity , it works.

  2. Wow……when I read that Michelle had Graves disease and her symptoms I thought I must need mental help because I was so misinformed about a disease I too have had for over 20 years. I had a. Storming thyroid 20 years ago and lost 10 pounds in 2 weeks while stuffing my face with food. The doctor diagnosed and treated right away. Doctors have little concern when I tell them I have Graves disease because I have not developed problems with my eyes, one of the other problems of is disease…you get Barbara Bush looking bulging eyes! I think Michelle’s post is irresponsible and should be removed…she doesn’t have a clue, glad she was never a home care nurse for anyone I know!

  3. well i give you credit girl you went threw alot sometimes you can not get the right answers from doctors they run a ton of tests put you on meds and i understand i have fibro and thyroid problems and alot more took me awhile 2 get real answers even now it is a day 2 day struggle w all doctors and meds raising my daughter i got sick 19 and as yrs go by it gets worse plus diabetes it gets frustrating but i do pray count my blessing my daughter helps me push on and stay positive i came here so i can talk 2 ppl who can relate and i usually keep it in there is no need for ppl 2 be rude it is an honest mistake ppl come on here 2 vent and hopefully touch ppl wow good luck michelle

  4. I also had a diagnosis of Graves about 15 years ago. They gave me radioactive iodine I do have the eye issue . The Graves did create some health and heart issues due to the high levels of adrenaline that were being released but I am on medication and I live a very normal life. I am also a 9 year colon cancer survivor, 8 months of chemo every Friday but it was worth it. I believe that Michelle may either not know what she was diagnosed with or may have gotten hold of some incorrect information as Graves and MS are not even distantly related.

  5. I’m glad to hear a lot of you have been fortunate I suffered a thyroid storm and almost died coma and life support for a week seizures on the brain had to learn to walk again major issues since that time if your graves or hyperthyroidism gets to aggressive before they can treat it, it can be deadly

  6. Hello, I have Graves Disease. I had a choice to have a thyroidectomy or have the RAI (Radioactive iodine treatment) OR… try to go in to remission by taking ADT’s (anti thyroid) medication.
    I am currently doing a fairly complicated treatment called block and replace!! Its really quite simple!
    One medication blocks the thyroid hormone that I make on my own. The other medication is a replacement hormone T4 Levothyroxine. I feel much better. My Endo (thyroid DR.) says that there is a chance that with in a years time my Graves Disease may go in remission! So sorry to hear about what happened to LISA’S boyfriend. I am really glad that I chose not to have the RAI for now. It just scared the hell out of me to think of what the effects of all that radioactive stuff. (short term / long term) Fear of the unknown I guess. Again Lisa so sorry to hear about what happened.

  7. Hi everyone.. My name is Julie Ivie have hyperthyroidism and Graves.. It’s been a rough time for me the last year fighting this I have been thyroid storm 3 times and now they took me off my meds until March 4th when I finally get to have scans and radioactive iodine treatment.. I am very scared.. So if anyone wants to be my support person or just talk please Facebook me I’m under Julie Lynn Clark or email me at Jclark19674@gmail.com… Thank you…

  8. Hi Im 22 I’ve been diagnosed with hyperthyroidism, Graves Disease, found out not to long ago, I had to go to Mexico I DNT have insurance so everyone here was taking an eternity to help out, I live in El Paso Tx , i visited an Endro Doc and he has me on a med called Gangloside Tiamazol , and another pill to just calm my shakiness and help me sleep . Please can anyone give me some feedback , I have a 1 year old babygirl who is very active and I cnt keep up it saddens me so much :,( !!!! Help please <3

  9. Hello my name is Linda I am 41 in march of this year I was diagnosed with Graves Diease. I am battling the symptoms everyday I take tapazole and troprol so I wont stroke out I am tired all the time. I have zero energy going to work is half the battle my left eye has putruded. I am so sick of people asking me who is beating me because of the black eyes! Or how are u losing the weight your looking good right! (Sarcasm) I cant really drive myself anywhere because my eye sight has gotten worse I feel like a burden to my husband and my 20 yr.old daughter y o get me to work or the store and the body aches oh my! Oh I have forgotten my mood wow I am groucy. Yet everybody when I say I have Graves Diease well you look fine really I just want to slap them you dont know how I feel or what I am really going threw.it is nice to be able to vent and to know that there are others out there!

  10. Myasthenia Gravis is NOT called Graves Disease. You are a little confused. I have a family member with Myasthenia Gravis and I have Graves Disease. They are very different. Myasthenia Gravis is rarer and much more serious than Graves Disease.

    Myasthenia gravis is either an autoimmune or congenital neuromuscular disease that leads to fluctuating muscle weakness and fatigue.

    Graves’ disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism

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