new doctor-makes #9

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Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 4/19/2007 11:58 AM (GMT -6)   
Hi everyone,

Long time no see, LOL. Well Monday I am due to see an endocronologist. My Rheumie is concerned about why I am not metabolizing Vitamin D, well duh, I am allergic to sun!!! scool But the gelatin caps they come in include artificial dye since Vit D is not to be exposed to the sun, like me. So I had to call the allergist to approve me taking the Vitamin D and I have to poke a hole in it in the dark and squeeze it out of the gel capsule. What fun. But this doctor might be able to give me injections to take too but we shall see. At this point what is a shot once a week for a month and then once a month? To me nothing after all I deal with just one more thing yeah tongue So we shall see what kind of tests he runs and what he says and then go from there. I am still getting sick from the sun and have to go back on the plaquenil which causes more sun sensitivity but what do you do? To balance Porphyria and Lupus with Sjogren's certainly has its challenges. Well until later. I hope you all are well and I will probably be back a bit more when school is out.

Love to all,
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 4/19/2007 6:52 PM (GMT -6)   
Leta, good luck with the endochronologist. Seeing all of those doctors has to get exhausting. Hopefully you'll get some more answers, although like you said, you might already know the answers.

Take care and let us know how things go on Monday when you get a chance.
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 10mg; Neurontin 300mg; 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 2006
Total Posts : 2818
   Posted 4/20/2007 4:46 AM (GMT -6)   
Hi Leta, well at least it sounds like you have a good attitude. All these doctors really bites don't it. Poking a hole in a vitamin d capsule in the dark? I've never heard that one before. lol. I guess you learn somthing new everyday. I hope your appt goes well for ya and they go with whatever works about the best for you.

Good luck
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/21/2007 4:19 PM (GMT -6)   
  I'm sorry your going through so much lately..((Hugs)). I hope your appt goes well on monday and you get some better answers. Please keep us updated when you can and take care. You are in my thoughts and prayers.
                                                        Love ya, Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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