update, upcoming tests, more bad news

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Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 7/24/2007 12:13 AM (GMT -6)   
Hey everyone,

I am so sorry I have not been here to offer support to you all. I miss you all so much. yeah Things in my life keep getting more nuts and I am not sure whether to be greatful and unhappy, which I am both if that makes sense. So I will try to keep you all updated and try not to confuse anyone.

Last Wednesday I had ultrasound of gallbladder, pancreas, and liver and I am still awaiting results. I am sore.
Last Thursday-Saw new Hematologist, who is referring me to bigger specialist who handles rare blood disorders, they think I have something in my blood that is rare but not sure what. So I see this other guy Aug 29.

Today-Cardiologist-go in next monday for echo, and 24 hours halter monitor. I do have murmur that could turn into mitral valve prolapse.

Wednesday-Allergist/Asthma, probably need epi pen and reacting to everything now. eyes
Thursday-Primary Doc for follow up,
Friday-Endocrinologist for Vit D deficiency follow up to see if body is absorbing Vitamin D

Still awaiting to see of appt with Neuro for dystonia, migraines, numbness on left side etc

Well, I think that covers it all for now, so as you can say, FRUSTRATION mad eyes sad And this does not include trying to finish moving and work part-time.

I will post more later, hope you all are well.

sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/24/2007 10:17 AM (GMT -6)   
Wow, Leta, that's a lot on your plate. All of those appointments sound exhausting. I hope the specialist can help sort out things with the blood disorder. Try to take good care of yourself through all of your appointments.

Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 7/24/2007 11:21 AM (GMT -6)   
Hey Leta, no wonder you are sore and I imagine tired of doctors and tests. It's ironic that some doctors treat us like we are physician addicts, like we want to be there so much. They just don't understand. I'm glad they are sending you to the bigwig blood guy and I hope his is good. Are they saying you don't have porphyria now, or that you have something else in addition, or that the porphyria is a rare type? I didn't see hashis on the list, but hopefully your endo will test your TPOS as well as TSH and other stuff, good endos usually do, but I've been to two who didn't. Much of my left side numbness and neuropathy went away when my thyroid was treated. I say this because many people with hashimotos autoimmune thyroid also have sjogrens and also have vitamin D deficiency. Your TSH appear normal (which is thyroid stimulating hormone) but that is not really an indicator if your thyroid is working, you may have a pituitary problem (predisone is a pituitary hormone I believe so going on and off pred doesn't help either) that affects the thyroid or autoimmune thyroid with damage that affects the proper uptake and conversion of TSH. TSH, from what my good endo said and my own personal experience, seems to have somewhat little to do with hypothyroidism, as I have extreme symptoms and damage from and to my thyroid and very high antibodies (TPOS) but my TSH untreated is mildly high 6-8 new normal range 3-4.

I'm so sorry you have to go to all these doctors and in the bright summer too. Hopefully your appointments are on gray days where the sun is not so bright. I'm sorry about the heart stuff too and neuro. At least they are taking this stuff seriously. Maybe they can find just one or two things wrong that will fix all the rest, or at least explain it. I wish you the best and will pray for you. I've still got the curtains pulled. Family came for a visit and they just don't understand. They wanted us to come to their campground in the daytime, which we did and ended up going to the beach, so I was out, and I didn't feel bad until later on I got sick. The next day they came out and wanted to do things and I was nauseaus and taking that medicine and my joints were killing me and so tired and they just want to pull the curtains wide open and my house is so bright, I'd throw up all over them. I keep telling them, but they don't understand because I can deal for a while, it's afterward. Well, I know you know all about it and I hope you are in your private sanctuary, relaxing peaceful cool and resting up for the rounds to come. I think of you alot Leta. Thanks for all your help.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 7/24/2007 1:19 PM (GMT -6)   
Hi Leta, wow you have alot going on. I think the waiting is the absolute worse. Plus never knowing if after all the waiting if they will find answers or just more questions. I'm so sorry you have to go thru all of this. I just pray they can get to the bottom of it and get you going on the right meds. Hang in there. one day at a time. I hope you post when you can. We all need support somtimes. It sounds like you can really use a little cheering section right now.
love and prayers
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 7/24/2007 2:35 PM (GMT -6)   

You have so many appointments with doctors that I wonder when you have time to let your body rest and recuperate. I'm so sorry you're going through so much and hope you get some answers to your problems so that you can get proper treatment and start to feel better. I'll be anxious to hear the results of all your appointments and tests.

Thinking of you,

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin

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