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Nonna
02-09-2010, 04:44 AM
i saw my PCP yesterday. I had all the specialist send updates to her and asked her to review them with me. I found out that I've been hit with a double whammy and didn't know it. Hassimoto's disease is also an autoimmune disease. go figure! One good thing is that the Parkinson's symptoms are supposedly unrelated to the Lupus. Any one have any thoughts on that?

Basically i posted this because I needed to say it and see it written down.

Nonna :hissyfit:


Enjoy Life to the best of your ability

Angel Oliver
02-09-2010, 06:07 AM
Oh Nonna i hope you are coping as best a possible and taking it all in what you have.Remember we are all here for you always.How do you feel about this? What has the doctor done to help you? Tests and meds been given? You just keep posting here,between us all we will try and help with support, maybe find support groups,help we'll try anything you want us to.
Do you have a good support system,family,friends at home? Just dont be too overwhelmed with everything if possible,keep posting...writing helps allot.
Lots of love
Amanda.xxxx

Nonna
02-20-2010, 06:05 PM
I'm coping much better; my family is there for me. My daughter is wonderful. Every morning she tells me to be healthy today. Thanks, nonna

Nonna
03-07-2010, 04:07 PM
I saw the rheumy on Friday. she's more positive on the Lupus diagnosis because of the Hashimoto's. She said that when you have one autoimmune disease you can easily have another. My meds have been pretty much set now. From what I've read I seem to be lucky. prednezone is only 5mcg a day while the plaquinil is 200 twince a day. the good thing about the Plaq (knock on wood) is that I did not have my winter bout of bronchitis/pneumonia.

thanks for listenng,
nonna

magistramarla
03-07-2010, 04:15 PM
Hmmm, I wonder if taking Plaq is why I didn't catch my hubby's awful cold last week? The PHD candidates share an open office, and one of them went in with a lot of coughing, sneezing, etc. It wasn't long before the others got it, including my Jeff. He told me that the other guys' wives were complaining because they and their kids got sick, too. I was braced for it, but I didn't get sick at all.
Marla

jlindsay
03-07-2010, 08:33 PM
Hi Nonna,
I was diagnosed with Hashimoto's disease shortly after having my son in 2003. Then I was diagnosed with ITP (automimmune disorder that affects one's platelet levels) and Lupus when I ended up in the hospital after complications from a simple biopsy procedure in November 2008. So I definately feel what you are going through right now. It can be overwhelming at times. Please feel free to private message me if you want to chat more. Keep your chin up!
Jina

Nonna
03-08-2010, 12:31 PM
Jina,
That is so weird. I started the thyroid problems and had to have surgery in '79; 2 years after my son was born. Let me say that if you also need a shoulder to cry on or to vent I'm here.

Marla I'm convinced that's why I haven't caught the crud from my grandchildren. They are coughing and sneezing and blowing all over the place and insist on hugs and kisses. I don't care; because I know I will catch it no matter what, but not this year. It's got to be the plaq.

If I understand the Plaquinel correctly it is an anti-inflammatory drug.
please correct me if I'm wrong anyone.

thanks to Mother Teresa and St Matthew; I know the Lord doesn't give me more than I can handle. But like Mother Teresa: I just wish he didn't trust me so much.

Angel Oliver
03-08-2010, 04:05 PM
Just to let you know im thinking of you and how cute your daughter says that,so very innocent.We are always here so post anytime.Ive been having migranes so carnt see so well like a disco in my head ,but you are in my thoughts always.
love Amanda.xx

Nonna
03-09-2010, 02:06 AM
Amanda hope the migraine goes soon. Get in a dark quiet room and play some soft music and sleep. Take youdrug anddo your best to kick it's butt.
I havean anomally in my brain that give me migraine/cluster headaches so I know how you're feeling.

Nonna

have faith and live to your best

SandyR
05-01-2010, 09:23 PM
Nonna,

How is your thyroid issue going? I am in the midst of a thyroid diagnosis. Something the doctors have been looking at for years and years but always said no, your labs are "normal". I am still a babe learning to crawl in this new disease's land. any advice would be greatly appreciated.

Thanks!
Sandy

Nonna
05-03-2010, 05:01 AM
hi Sandy,
My thyroid issues have been sorted for quite awhile; I've actually been having my dosages lowered lately. I go back in June. I do the six month checks.

Are you seeing an endo? PCP say that you in the normal range. that means nothing; I was still tried and gaining weight. I went to an endo and he tripled my dosage and I felt great and started to lose weight.

See an Endo and see what He/She says.

Nonna :twitcy::twitcy::wacko:

SandyR
05-03-2010, 07:56 AM
hi Sandy,
My thyroid issues have been sorted for quite awhile; I've actually been having my dosages lowered lately. I go back in June. I do the six month checks.

Are you seeing an endo? PCP say that you in the normal range. that means nothing; I was still tried and gaining weight. I went to an endo and he tripled my dosage and I felt great and started to lose weight.

See an Endo and see what He/She says.

Nonna :twitcy::twitcy::wacko:

Yes, I am seeing an Endo on Wednesday. I am trying to learn as much as possible before then so I understand what he is saying and can ask intelligent questions. I am hoping that whatever path we chose to go down to help me with this will also make me feel great and lose weight. I will let you know what he said when I see him.

Sandy

ricketyrose
05-03-2010, 05:07 PM
I had some parkinsonism and yes you better believe its related. my neck froze and my right hand would tremor. it happened when I took vitamin D in the beginning. I have secondary hyperparathryoidism and that is a kidney disfuntion. turns out the immune system is amino acid or protein and I want to stess the word acid. to nutralize this acid we need calcium and d to absorb dietary calcium or it will leach it out of the bones or anywhere else. when the kidney disfunctions as bad as ours do it causes this occilation of the pH in our bodys. it started hypercorrecting its self so your blood pressure calcium vs magnesium and your neuromuscular function goes wako from weakness to frozen, calcium vs phosphate. constipated vs diarea, high blood to low blood sugar, mania to depression, alkaline vs acid. HOMEOSTASIS. also our bodies being like fish tanks needing the proper pH have problems regulating the bacteria. some of you might notice yellow toe nails, cracked feet or ulcers in your mouth. that is you bodies inability to get ahold of bactera that normally would not phase you. homeostasis. you might not even have the ds dna yet, I didnt. doesnt mean those kidnys dont need some tlc.

Nonna
05-04-2010, 04:28 AM
I need to research the relationship of the hyper/hypothyroidism to kidney disfunction

this is news to me. I see my rheumy on friday so I'll ask I see the endo in June.

Nonna
:wacko::twitcy:

ricketyrose
05-04-2010, 08:45 AM
thats hyperparathyroidism its different from the thyroid its little glands inside the thyroid that control calcium. calcium metabolism is our nervous system because ca controls muscle contraction, blood pressure, nerve conduction, and the neutralization of our immune system. that is why vitamin D deficiency is so profoundly important to those with lupus. there is hyperparathyroidism caused by a benign tumor in one of the parathyroid glands and there is secondary hyperparathyroidism which is the kidneys trying to control homeostatis of which calcium is majorly important to.
your serum calcium and PTH may be normal I think its an alkaline phosphatase or something like that which measures secondary hyperparathyroidism.

Nonna
05-04-2010, 10:49 AM
I have no parathyroids. they were removed with my thyroid; that's why I have hypocalcemia. I can not retain calicum in my blood; I'm well on my way to osteo. I can not take the osteo meds. I did not realized that the kidneys get involved with this. The med called Rocalcitrol (generic calcitrol) is a special Vitamin D supplement that helps with the absorption of calcium.

This is crazy how things are so inter-related.

I need to think on this.

Thanks,
Nonna

:wacko::twitcy::twitcy::twitcy: