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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2008 9:38 AM (GMT -7)   
I saw my Internal Medicine Specialist last Thursday. This "angel" of a doctor was the person who got my diagnosis really rolling in 2000. It's been 9 years since I last saw her, so the visit was really great! 
 
I wanted to see her because of all the "weird and wonderful" changes that my body has been going through this past 14 months or so. Most importantly, my blood pressure issues.  I have uncontrolled hypertension.  A year ago, I had perfectly normal bp.  Why the sudden change?? 
 
We did talk about my medication allergy and how many of these changes have happened since that event.  She's not convinced that the allergy is the only reason for these changes I'm having.
 
We went through a lot of my symptoms, and what tweeked her interest was when she listened to my heart.  I have abnormal heart sounds. Who knew! LOL.  This, combined with my inability to handle heat (or even moderate temperatures), tingling in my hands, fingers, feet and toes (a nerve conduction test came back normal), headaches, nausea (very recent), anxiety, sweating, racing heart beat, have led her to test me for a very rare adrenal gland tumor condition called a Pheochromocytoma.  A tumor on the adrenal glands will cause the adrenals to secrete excessive amounts of noradrenaline, epinephrine, etc.  All the "fight and flight hormones".  If I do have a tumor it would have to be surgically removed (laporoscopic).  I am having an urgent Echocardiogram done this Wednesday to look at my irregular heart sounds.
 
I'm doing a 24 hour urine test to see if I have an excess of the hormone Metanephrine.  This will give us the answers. I do the test this coming week.  Another issue to possibly deal with.  But it sure would answer some of my nagging issues and questions.  I'm thinking if there is a tumor, they might as well get it out when I'm having my hysterectomy in November.  Both operations are done laporoscopically.
 
 
On a different topic, but sort of related, I had to go to the ER via ambulance on Friday.  I was having stroke symptoms..... Very much like the symptoms I had when I had my stroke in 2002.  I didn't have a stroke, and everything came back normal.  ER doc isn't sure what I was experiencing.  He was VERY interested in the "adrenal tumor" test I was going to take.  I have the feeling, I experienced a massive anxiety attack that mimicked a stroke. If that's the case, I'm not impressed with my body right now!  An anxiety attack of that severity is NOT welcome in my life!!! LOL.
 
Thought it makes for an interesting topic to read about, especially if any of you have uncontrolled hypertension and the other symptoms I mentioned. 
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/14/2008 9:54 AM (GMT -7)   
That is interesting ginny. It sounds like it's a good thing that you saw your good internal medicine doctor and I'll be really interested to see how the labs turn out. Thank goodness you didn't have a stroke, but it still must have been scary.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/14/2008 11:02 AM (GMT -7)   
(((((((Ginny)))))))))
Hey Girl! I've been so worried about you! I posted a thread for you. I know you were terrified thinking you were having a stroke! I'm so thankful you didn't. Keep us posted on the adrenal tests. So good to hear from you. Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2008 4:02 PM (GMT -7)   
Hi Hippi and Judy,
 
Yes, this will be interesting to find out more on.  I'll keep you posted on the lab results.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/14/2008 4:19 PM (GMT -7)   
Wow, ginny, sounds like you have a great doctor. I have had those attacks for years and have the hyperpigmentation of adrenal disease and abnormal adrenal tests and they won't even bother to look at mine. I've gone to hospital in ambulances and everything. Its a horrible feeling. Now they just want to give me daily steroids, without looking for a tumor or anything at all. Just take more pills.

It's not that my docs are stupid. They just don't care.

I've had some imaging done, none focusing on my adrenals. They were going to do an MRI on my head because of my pituitary and hypothalmus, but decided against it once they saw I had medicare.

Oh well. I still have a possible lymphoma dx hanging out there. The doc said to me, well, the only thing I can do is refer you to a doctor to have every affected gland biopsied. You don't want to go through that. After all, you aren't losing weight, don't look sick...

I'm just tired of them all and taking a break. Hopefully getting through the TB tx will help, it seems to ALOT.

Anyway, take care and don't lose that good doctor. I would be interested in knowing how things turn out. Is she going to schedule you for a cortrosyn stim test? I got two of those, both abnormal and the docs told me they were normal but to get treated for TB because I'd be needing steroids. Actually all my pituitary tests are abnormal. Everything is abnormal on my endocrine side. Bah humbug to them.

I'm so so so happy for you that you have an answer in site and its a reasonable one. This is erally great news!
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/14/2008 7:10 PM (GMT -7)   
Hey Ginny!

That tumor might explain why you thought you might have PTS !! Sure would explain all that anxiety and panic. Hmmmmmmm.

I hope they do all the right tests FAST so you can get back to 'normal' fast!! If you have a tumor . . . I wonder if removing it would make your lupus symptoms disappear too? One can always hope!

Watching for updates!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2008 7:32 PM (GMT -7)   
Marji, that is horrible.  I can't believe you're being ignored.  Adrenal issues are serious! I'll be praying for you. ((((hugs)))) The one and only symptom I don't have for this tumor thing is weight loss. I have the opposite problem, can't stop from gaining the weight.  I think that might be because I'm so pumped full of natural and synthetic cortisol, I'm blowing up like a balloon.  I look pregnant.  I'm slim everywhere except around my middle. I hate it!!!
 
My Internal Med doctor is awesome.  Best doctor I've ever had. She was on maternity leave for 8 years!  Had 3 kids. So I wasn't able to see her.  She's back to work now, and just in time apparently!  I can keep her busy, LOL.
 
Rosie, I'm very hopeful that if this is what we think it is, I'll be rid of a lot of my symptoms. It's amazing what hormones will do to us isn't it.  I'm also very hopeful that my hysterectomy will calm a lot of things down too.  My mom had a hyster after my sister was born and she has always said how different and more vibrant her life became. this could be a very interesting autumn for me. I'm doing a lot of praying about it all.
 
I'm getting the blood work done tomorrow, and picking up my 24 hour pee bucket at the same time. I want to get on this pronto.  Echo for my heart on Wednesday. Lots going on.
 
XXX
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/15/2008 5:00 PM (GMT -7)   
(((( Ginny ))))) bless your heart! THis is all very interesting, it's amazing what affects what in our bodies. I am glad you didn't have a stroke, I know that was a relief for you too. Take care sis and keep us posted on test results, etc. You are in my thoughts and prayers. Hugs and luv to you
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/20/2008 5:55 AM (GMT -7)   

Hi! Ginny,

We have alot in common! smurf I, too, battle hi b/p and spilled catecholamines in my urine. I went to the mri scanner to rule out the possiblity of an adrenal tumor, too. Basically, because of my systemic/cns lupus, and my arteries being inflammed alot, my b/p is not very good. And twice I have had scary episodes where I was literally peeing bubbles. My urine was so foamy I thought I was losing my mind and had cleaned the toilet without remembering it. Next time it happens, I pee in a cup or a ziplock baggie and take it to my family doc. I am blessed to have drs. that believe me. I worry about lupus nephritis. God bless and hang in there for your tests. Hey, they are a reason for us to get up in the morning!

hugs,

sue


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/20/2008 8:01 AM (GMT -7)   
Ginny,

Have you gotten results from your echo or your blood work or urine? I hope so because I know what a drag waiting can be. Let us know how you're doing.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/20/2008 9:16 AM (GMT -7)   
Did you lose any movement at all?  when I had a stroke, I went to the er and was told that i did not have a stroke.  my right arm felt heavy, and was hard to get it to move at all.  they did refer me to a neurologist, and he did I think an MRI, and found the stroke deep inside my brain, along with some white matter.  He believed Lupus caused the white matter.  Lesions i think he said.  he was one of the doctors who did not question my lupus diagnoses by dr. marlowe.  The kind of stroke I had, only affects one's right arm.  sometimes the er will not do extensive testing.  they did a cat scan but that was all.  Hope in your case that this is not true.  Hope you don't have to live with the possibility of stroke again.
Hester
 
 
,ginny said...
On a different topic, but sort of related, I had to go to the ER via ambulance on Friday.  I was having stroke symptoms..... Very much like the symptoms I had when I had my stroke in 2002.  I didn't have a stroke, and everything came back normal.  ER doc isn't sure what I was experiencing.  He was VERY interested in the "adrenal tumor" test I was going to take.  I have the feeling, I experienced a massive anxiety attack that mimicked a stroke. If that's the case, I'm not impressed with my body right now!  An anxiety attack of that severity is NOT welcome in my life!!! LOL.
 
Thought it makes for an interesting topic to read about, especially if any of you have uncontrolled hypertension and the other symptoms I mentioned. 
 
Ginny


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2008 7:26 PM (GMT -7)   
Ginny, hope you are doing okay.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 9/20/2008 8:13 PM (GMT -7)   
I just had to do a 24 hour piss test this week. My parathyroid levels have been thur the roof for a year now but my caluim levels are way low, I think they were checking to see if I was pissing out all my caluim. Can't wait to get the results. My Vit D leaves are very low again and I'm been put back on 50000 units of Vit D for 2 months.

I had 3 Dr. appointments this week and doing some other stuff while out, taking care of other errands. and a couple of days I did a little yard work. Last night I started going down hill. This morning, I couldn't get up and walk anywhere. My BP and heart rates were all over the place. My brother came and did some yard work, I had to promise I would stay laying down. I'm doing a little better tonight but still feel weak.
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/21/2008 9:16 AM (GMT -7)   
Hi everyone,
 
Well, considering everything that is going on, I'm doing not too badly.  I have a positive spirit which gets me through a lot wink .
 
I am experiencing a constant adrenalin rush. It never ends. Ever.  I constantly feel hyped up, jittery, and on a buzz.  It's awful. I've been like that for a few weeks now.  It's wearing me out.  I also have constant tingling in my hands and feet.  I definitely have all the symptoms of an adrenal issue, whatever that might be.  Either that, or I'm too much prednisone, and all I need to do is taper down a bit.  I'm afraid of doing that and ending up in a lupus flare right before I go in for my hysterectomy in early November.  So I kind of have to live with these symptoms until I get those test results back. I should hear from my Internal Med doctor this coming week.  I'll keep you all posted for sure.
 
Thank you for asking how I'm doing,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/21/2008 9:30 AM (GMT -7)   
YOu are very brave Ginny.  I do not know if I could have handled this as well as you have.  I can hardly tolerate caffiene jitters, much less what you are feeling.  I hope you get some release from this soon. 
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/21/2008 8:56 PM (GMT -7)   
Ginny, its funny you and I have adrenal issues and can't lose weight! Why oh why? I mean I try everything. I'm beginning to think I'm stuffed with sawdust or something! You know I got all my pituitary and sex hormones and all that tested and they were all messed up too so my pituitary is also bad. Sometimes the pituitary causes problems for the adrenals by starving them of ACTH.

This other woman I knew said she had no weight loss with Addison's either and her mom had it and had none either, which delayed her diagnosis. By the time you get the weight loss, you are often too sick for anything to be helped, this girl said, and in her mother's case, she died from it because they waited so long. Adrenal problems with neuropathy are about horrible, and remember that when the adrenals go, everything goes. My whole disease complex is said by all my Mayo docs to have been caused by an attackon my adrenals, not my thyroid or pitiuitary. My adrenals recovered some, but the other glands were damaged, diabetes and liver problems triggered, vit and hyperpigment. They said that the adrenals are key. But they still won't check them for a tumor, a benign one. Like what do they think happened to them? I ask and they say, I don't know, but they aren't so bad now.

Sometimes I think they are more nutty than I am. I'm so glad that you are getting good care. I wish I could see your doc. Once I get off my TB medicine, I want to try going to this natural hormone womens' health doctor to see how more natural hormones help my polyendocrine dysfunction. the only treatment I got for my severe panic attacks, passing out, fatigue, etc. was psych drugs with no testing. When lithium gave me a heart attack I begged them to test my thyroid and it was bad, but they lied, but at least I had the test. Later, another doc finally let me see an endocrinologist.

Take care and let me know what it is. I've read about them and asked.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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