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Old 11-10-2009, 09:26 PM   #1
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so sick and undiagnosed for 10 months

hello there,

during the past 10 months, i have been so sick. up until last week, my doctors have been telling me that my symptoms are related to cervical spondylosis and a cervical disc herniation that was diagnosed in march 2009. i have indeed had symptoms related to my neck problems, but i have known that there was something else happening in my body based on my experiencing incredible fatigue, nausea, night sweats, visual changes and eye discomfort among other symptoms. i have been asking my doctors for help, and all but one of them have said that i am simply having an atypical response to my cervical spine condition and then bring up anti-depressants. my regular blood work has all come back perfect, except for a vitamin D deficiency; i have been screened for MS via brain and c-spine MRI and visual evoked potentials testing--all of which were negative for MS. i am so desperate to feel better that i even went so far as to schedule surgery to repair my herniated disc on 12/3/09 in hopes that the doctors were right.

after the stabbing and burning eye pain, along with abnormal pupil dilation returned last week, i went back to my neuro-ophthalmologist last friday. upon dilating my eyes, he said that the arteries in my optic nerve were smaller than he would expect for someone my age (42), and that he suspects an auto-immune disorder, such as lupus, is the cause. he called it vasculitis and referred me to a rheumatologist and instructed me to take a clinical dosage of gingko biloba (60mg) 2x/day to help improve blood circulation to my brain which i started on saturday. the gingko is causing me to have really awful headaches which the doctor told me would subside within about 5 days.

i have been telling the doctors how truly ill i have felt, but no one has thought outside the box until last week's visit to the ophthalmologist. the rheumatologist the eye doctor referred me to cannot see me until february. i found another one who can see me the day after tomorrow.

i have a 4-year-old daughter and a life-loving husband and sometimes i feel like i am going to die. i just want to feel a little bit better. is that ever going to happen?

 
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Old 11-11-2009, 09:10 AM   #2
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Re: so sick and undiagnosed for 10 months

Binx, hi. I'm sorry you're having such awful problems. Honestly, if I were you, I'd grab at a rheumatologist as soon as possible (not "grab" literally, of course ). And if I were you, I'd ask the rheumie about taking meds (even herbals)... so you don't risk taking something that's possibly contraindicated, so you don't adversely affect test results, etc. When the dust settles, then you could revisit what helpful things to take... (That's only my opinion, of course, and I'm merely a patient.)

Please let us know what happens next. Wishing you GOOD LUCK, Vee

P.S. I was sinking like a stone, too, but got great help, finally, when I saw a rheumatologist who's really good at this stuff. So please keep trying! Big improvement is possible, with the right Dx, appropriate meds, check-ups, etc. BTW, low B-12 *alone* wears one down. Do not lose hope!

 
Old 11-11-2009, 12:26 PM   #3
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Re: so sick and undiagnosed for 10 months

thank you for taking the time to reply, vee. i have been struggling with my perspective so much lately--it is good to know that other folks have felt the same way, and that there is hope for a return to some semblance of wellness.

i was a little apprehensive about not going to see the "rheumie" that my neuro-ophtho recommended, but given the way i currently feel, i agree with you that i should just get in to see someone as soon as possible. between the overwhelming feeling of fatigue and sickness along with resulting anxiety, i need to feel like i am moving in the right direction. i can try to see the recommended doc in the event that i want a second opinion, or don't love the doctor i see tomorrow.

i will certainly mention the gingko biloba to the rheumie, as i do not want to do anything that will compromise either my health or test results. other than the gingko, some fish oil and vitamin supplements, i am not currently taking any medications.

i will try not to lose hope, but sometimes it is so hard, especially after having this dragged on and on for so long. i will let you know how my appointment goes tomorrow.

thank you again for your feedback.

 
Old 11-11-2009, 05:50 PM   #4
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Re: so sick and undiagnosed for 10 months

Hi Binx....sorry it has been so rough. Living with lupus is a constant roller coaster ride so unfortunately your story is not uncommon. I think it is a good plan to see the rheumy tomorrow without canceling the appointment in February. If you have lupus you will find that you run through lots of doctors. It is really important that you find a rheumy who really meets your needs....medical, emotional, etc. He/she also needs to play well with others as you will develop a team of doctors. So hang in there...it will improve. Let us know how it goes tomorror.

 
Old 11-11-2009, 08:39 PM   #5
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Re: so sick and undiagnosed for 10 months

Welcome, I had to chime in with my bravos to the posts above. I personally went to 3 Rheumatologist before getting my Lupus diagnosis. I had to give them the benefit of the doubt as I do have fibromyalgia as well and at least they were trying to help me. I will say that after receiving my Lupus diagnosis and treatment that my symptoms have improved somewhat. It is a long process and just as you did, I had a MS workup as well that was negative when this all began. BTW I am 8 years post op Cervical fusion and plating of C5-6-7 so I know exactly where you are coming from in relation to the spinal issues. As a matter of fact, a spinal insult as simple as a whiplash can bring on similar issues as you described. I actually ruptured my disc just slapping at the alarm clock one morning. As for the surgery, I went back to work half days within 10 days and fulltime in 3 weeks, of course that was before the FMS and Lupus set in. I will say that I have a wonderful doctor now and you may have to go through several to find the right fit. But I will say I would go as soon as I possibly could and not delay. You can always change later. If you have not looked at the sticky posts at the top of this thread, please have a look as there is wonderful information there. Please let us hear how your appointment goes tomorrow. And if you have any questions on the spinal surgery, just ask. I will be happy to share my experience.

 
Old 11-12-2009, 09:42 AM   #6
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Re: so sick and undiagnosed for 10 months

thank you goldyfm and heidi for your thoughtful responses. this health board is such a gift to folks like me who are struggling to find their way in the midst of confounding illnesses/injuries. this is such an isolating experience, and it is a great comfort to be able to communicate with others who can relate in one way or another.

i have looked at the sticky posts which are truly helpful. however, i also made the mistake of doing some other online research about vasculitis which has succeeded in scaring the living pee-pee out of me. the neuro-ophtho detected vasculitis only in my optic nerve so far, but after reading up on it, i am terrified that it is in my entire central nervous system which could be deadly.

intellectually, i know i need to wait and see what the rheumy says this afternoon, but i have been awake all night, envisioning what my husband and daughter's lives will be like without me. i know that is completely counter-productive, and that if i do have lupus, it feeds off of stress, but after 10.5 months of this, i am so depleted both physically and psychically, i am losing the ability to maintain my equilibrium in the face of the unknown.

i go to the dr. in 3 hours and 20 minutes.

thank you, everyone, for "listening".

 
Old 11-12-2009, 12:55 PM   #7
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Re: so sick and undiagnosed for 10 months

No problem Binx. I want to share my own thoughts on the unknown. I was originally told by the 1st Rheumie I saw that "I can give you a label for what ails you, but it will only make you worry as there is not much can be done!" as he told me of the fibromyalgia. I insisted I be told as I have always felt I deal better knowing what faces me so I can make a plan of action. So I do know how you feel. It was some 3 years later after seeing yet 2 more Rheumies that I got the proper testing and the lupus was found. I do have to warn you of trying to self diagnose. If you read hard enough and long enough, you can probably find a symptom to just about every illness on the internet. I try to take in the info with a grain of salt. If I see something that catches my eye that may help my treatment, then I may approach my doctor regarding that issue. But I suppose we do scare ourselves at times. I would try to remain open at this time and not dwell on the big picture just yet. I will look forward to your progress with the Rheumie.

 
Old 11-13-2009, 12:55 PM   #8
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Re: so sick and undiagnosed for 10 months

i went to the rheumatologist yesterday and relayed my tales of woe and ill health from the last 10 months. after listening carefully, and a physical examination, he was left scratching his head, but sent me on my way with a lab slip to look for inflammation that may be due to lupus or other auto-immune disorders, in addition to a lyme disease blood test. i also had a chest x-ray to look for other presentations of vasculitis. the dr. seemed willing to help, and was not patronizing. he did say i didn't present with the typical pattern for auto-immune diseases, but he said we'd try not to leave any stones unturned and either figure out what's going on, or further rule things out.

it will take a week or two to get all the blood work back. in the mean time, i am still feeling so terrible, and am doing my best to refrain from further internet research so as to avoid sending myself into a panic.

thanks again to everyone who has responded for your input and support . i will update you as results become available.

wishes of strength and good health to one and all.

binx

Last edited by binx; 11-13-2009 at 12:55 PM. Reason: typo

 
Old 11-13-2009, 05:25 PM   #9
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Re: so sick and undiagnosed for 10 months

The appointment sounds positive Binx. Make sure you get copies of all your labs in case you decide to go to the appointment in February. Getting a lupus (or other autoimmune) dx is difficult. It does sound like the doc is willing to work with you.....good sign. Keep us posted.

 
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