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Thread: concerned about ILoveHistory

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    Hey all,
    Has anyone else noticed that ILoveHistory has not been on any of the forums for a while? I feel very concerned about that young lady. At first, I just thought that she must be very busy with school, but now I'm wondering why she hasn't been commenting at all for so long. Anyone else have any idea what has happened?
    Marla

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I, too, have noticed her absence. I sent her an e-mail to let her know that we are thinking about her and that we miss her. I hope that all is well with her, she is such a beautiful soul and yet, has so much courage! I truly admire her :lol:

    Come back soon, ILoveHistory....you are loved!!

    Saysusie
    Look For The Good and Praise It!

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    Hi Magistramarla and Saysusie!

    Thank you SO very much for all your kind words, love and support! It is truly appreciated! Thank you very much for the e-mail, Saysusie!

    Well, I have been really, really sick lately... After two years of me being so sick, we have finally discovered what the problem most likely is: it looks as though I have Wilson's Disease... We need to do loads of labs to be sure though and I'm looking at a long hospital stay... We sent my hair away to the U.S.A. for lab analysis and basically I have mercury poisoning and despite me supplementing HEAVILY, I am SEVERELY deficient in Calcium, Magnesium, Zinc, Manganese, Cobalt and Selenium; my Iodine is sky high and my Potassium is too low. I was barely excreting any copper in my hair, which means that it's collecting in my body and not able to be disposed of. Selenium deficiency is extremely rare and because I am so deficient, I am not absorbing properly through my intestine. I do have Celiac Disease, but I haven't consumed gluten for months... We have been advised to look for Crohn's Disease or Ulcerative Colitis, both of which are in my family. Basically, I had a Colonoscopy last year due to severe bowel problems, but they only found one ulcer. However, they never bothered to check out my small bowel!

    I am SO angry because I have seen three Neurologists and not one of them checked for Wilson's Disease, despite my many neurological problems! If we hadn't discovered this now, the Wilson's would have eventually killed me! I know that Wilson's is fairly rare, but it was something that I was thinking about in the back of my mind for ages, but I never said anything about it - you know how doctors are...

    The tests that have been suggested are:

    Bloods and Similar

    *Salivary Hormone Tests; Cortisol Saliva Test, four times a day
    *TSH
    *Free T4
    *Free T3
    *Thyroid Antibodies
    *Renin/Aldosterone
    *Serum Cortisol
    *24hr Urine Cortisol
    *Faecal Copper Test
    *Red Blood Cell Copper
    *24hr Urine Copper
    *Serum Ceruloplasmin
    *Glutathione Peroxidase
    *Serum Calcium
    *24hr Urine Calcium/Phosphate
    *Magnesium
    *Sodium
    *Serum Potassium/Packed Red Blood Cell Potassium (?)
    *Urine Potassium
    *PTH
    *Vitamin D
    *Serum Phosphate
    *Whole Blood Elements Analysis (?)/Packed Red Blood Cell Elements Analysis (?)
    *Serum Uric Acid
    *24hr Urine Uric Acid
    *Creatinine Clearance
    *Amino Acid Analysis (?)
    *Baseline 24hr Urine Magnesium Measurement, followed by 0.2 mEq/Kg Intravenous Magnesium, followed by 24hr Urine Magnesium Measurement
    *Vitamin B12
    *Ferritin
    *Folate
    *Protein Total, Albumin
    *Bilirubin
    *ALP
    *GGT
    *AST
    *ALT
    *Full Blood Count
    *Cholesterol
    *Glucose
    *Insulin

    Surgical/Imaging/Biopsies

    *Look for possible bile duct obstruction and/or gallstones/Hepatomegaly/Splenomegaly
    *Look for fluid buildup in the lining of the abdomen
    *Look for Crohn's Disease/Ulcerative Colitis
    *Thyroid Imaging
    *Bone Density Scan
    *Liver Biopsy
    *ECG
    *ERCP
    *Upper Endoscopy/Upper GI Series

    As I said before, long hospital stay...

    I have been having the most excruciating pain in my back, right wrist and left side of my chest - a very unusual pain - and when I palpate a certain part of my palm above my wrist, a small lump appears. Now, I am worried about tumours/Cancer (big in my family)... I have a Scoliosis, Scheuermann's Kyphosis and Occult Spinal Dysraphism and I have terrible back pain every day of my life, but this pain is so different... It isn't relieved when I lie down and is worse at night, as is the chest pain... The pain spread from my spine area to my whole back to my chest to my wrist... I have been to my G.P. three times with the back pain and he told me to come back yesterday if it wasn't gone, but I wasn't able to go and now he's away the whole of next week! He has given me pretty strong painkillers - Tramacet (Tramadol) though, but it's just not enough! Do you think that I should make an appointment to see my Paediatrician/Paediatric Cardiologist?

    Keep well and God bless!

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    Hey, ILove History!
    It is so good to know that you're still out there! We were worried about you! Hopefully, now that the doctors have yet another name to go on with you, they can actually accomplish something for you. I, too, am about to embark upon a whole series of new tests over the next couple of weeks. While I'm going through mine, I'll think about you and we can hold hands in cyberspace! Stay strong, sweetie! I'd give you some of my strength if I could!
    Fortes Fortuna adiuvat!
    Marla

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    Hi Magistramarla!

    Thank you SO very much! If you don't mind me asking, what sort of tests are you having?

    You've already given me some of your strength; I wish that I could reciprocate!

    Keep well and God bless!

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    I love history,

    I'm sorry to hear about you going through so much. I was just worrying about my one syptom and here you have a myriad of them. Puts things in perspective for me. I hope you get a final diagnosis soon without going through much more than you have already been through.

    You are a very strong and remarkable young lady, I truly admire you. Hang in there.

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    Hi Pretti in Pink!

    Thank you SO much for your very kind and supportive words!

    Keep well and God bless!

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    Hi ILoveHistory,
    Check out my post called "I have a diagnosis". The neurologist thinks that I have spinocerebellar ataxia. It is a genetic degenerative disease that causes the cerebellum to gradually atrophy, causing movement disorders, and other fun neurological effects. Since you're so interested in neurobiology, you will probably find the info on it that is on the internet to be very interesting. Here's what I'm in for in the next couple of weeks:
    Sept. 12 - Botox injections into the vocal chords for Spasmodic Dysphonia
    Sept. 15 - Another MRI of the brain & spine, this time with contrast
    Sept. 19 - A complete nerve conduction study (when the doc placed a vibrating tuning fork on my knees, I didn't feel a thing)
    Whenever I'm called - A specially trained phlebotomist will come to my home or place of work to draw blood which will be specially packaged and sent to a lab called Athena in Massachusetts for genetic testing. (My school nurse is all excited for it to be done in her office).
    Sept. 24 - (Jeff's birthday) The neurologist wants to talk to both of us in his office.
    See why I said that we should hold hands in cyberspace and give each other strength? My stuff isn't nearly as complicated or scary as yours, but I'm dreading it!!
    Love,
    Marla

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    Hi Magistramarla!

    That sounds awful! I can assure you that yours sounds even more scary than mine! Don't you just hate that M.R.I. Scanner? It is SO loud! :x I will keep you in my thoughts and prayers... Do you have S.L.E. as well? Will you have a local anaesthetic when they inject the Botox into your neck?

    What type of movement disorders do you have, if you don't mind me asking? I have tics involving my left shoulder, both eyes and my neck; weird involuntary movements, usually affecting my legs; spasms and tremors (pretty much everywhere).

    Do you suffer from seizures too? If so, what type of seizures do you have, if you don't mind me asking?

    My birthday is on 25th September and I'll be seventeen! :bday: I just hope that I'm not in hospital then! :roll:

    Keep well and Gob bless!

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    Oh, I hope you aren't in the hospital on your birthday! At the same time, I want you to get better!

    I hope things start looking up for you soon, Ilovehistory!
    Missy

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