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Avatar universal

13 Specialists and No Diagnosis - Please Help!

Hi Folks:

I am praying and hoping that someone in this Forum (or another - I will post my "case study" in a few places with the hope of getting an answer or some suggestions) can help me figure out what is wrong with me. To date I have seen at least 13 (THIRTEEN) doctors and none of them can give me a solid diagnosis - and meanwhile, I am still symptomatic of SOMETHING, and don't know what to do.

So here's the facts.

Current Medical Status:

1. Weight Loss ≤ 18 pounds since 12/1/09 (history of anorexia (w/exercise bulimia)/OCD)
2. Diagnosed with PCOS years ago
3. ≈ 15 “episodes” of visual disturbance each lasting anywhere from 30 seconds - 2 minutes with no *real* headache before or afterwards (by visual disturbance I mean: colors flickering, moving across my vision, followed by blurred-tunnel vision/inability to focus) and then it resolves on its own
4. Possible triggers? Changes in weather, extreme stress, weight loss, skipping meals, anxiety, low BP?, family history of migraine (Father (20 years))
5. At times also experiencing pulsatile tinnitus(?) or the sensation of hearing my heart beating/pounding in my head and/or ears.
6. Brain MRI (w/o contrast) = Normal
7. EEG = “Unremarkable & within normal limits”
8. Since 12/1/09 have had *persistent* "floaters" to one degree or another in one or both of my eyes (at first, one ophtho said they were "inflammatory cells" caused by some lower corneal irritation - used eyedrops for a week, wore my glasses (instead of contacts) return visit showed no more inflammatory cells, however TO THIS DAY: floaters persist.
9. Bloodwork 3/1/10 checking for: full CBC panel; vitamin deficiencies; Lyme Disease; inflammatory disease/processes; electrolytes = Normal

To date I have seen: 2 GP's, 2 ENT's, 2 Ophthalmologists, 2 Neurologists, 1 Endocrinologist, 1 Psychiatrist, 1 CBT Psychologist, and 1 OB/GYN and no one, definitively, can give me a solid diagnosis.

(Suggested) Diagnoses to Date

1. Generalized Anxiety Disorder (Is this all anxiety-related?)
2. Atypical/Ocular/Ophthalmological/Frustrated Migraine/Aura
3. Macular Keratitis/Primary Iridocyclitis
4. "I hate to say this, but some of what you're describing actually sounds "fantastic," like, it doesn't make any medical sense"” (ENT #2)

I literally feel like I'm losing my mind. Not a SINGLE doctor I have seen can tell me what's going on here. They say a lot of "could be" and "might be" and "possibly" and no one seems to think my symptoms are "severe" enough to warrant any kind of treatment, but the ongoing symptoms (floaters, "visual episodes", strange auditory episodes, etc.) are really, really having a tremendously negative effect on my quality of life. I wish there was SOMETHING I could know/do to make this all go away.

I have some feeling that I may be experiencing adverse effects of long-term use of Klonopin. I've done some reading on tolerance-withdrawal” effects (as in, my body is "detoxing" itself because the dose I am on is not high enough and it needs more), but no specialist I've seen thinks that is a legitimate diagnosis.

Also, if it's any help, here is my drug (Prescription & Non-Prescription) history:

Date Drug Dx Rx How long on it?
2004 Zoloft (generic) Anorexia/Depression/Anxiety 25-100mg 3 years (no longer taking)
2004 Ativan (generic) Anorexia/Depression/Anxiety 0.5-1.0mg Several weeks (no longer taking)
2009 Klonopin (generic) Generalized Anxiety Disorder 1.0mg (0.5/2x day) 1 year+ (still taking)
2009 MIRALAX Chronic Constipation As per label 6 months – 1 year (still taking)
2010 TwinLab Vitamin B2 Headache/Visual Disturbances 100mg (2 capsules/2x day) 2 months (no longer taking -- symptoms persisted while taking it, second neurologist suggested I discontinue)
2010 Vita Medica PM Multi-Vitamin Headache/Visual Disturbances [Neuro prescribed 400mg magnesium (stomach couldn’t tolerate); getting 300mg in a multivitamin instead] 2 months (still taking)

I so hope someone can help me. I feel like everyone in the medical community has written me off. And going to CBT once a week is doing NOTHING for my organic symptoms. Do I need to have an MRI with dye, or is an MRI without dye enough to find anything "hideous" (brain tumor, MS, lesions, etc)? I had an ambulatory EEG scheduled, and then my neurologist cancelled it because he thought it would be a "low yield" test and show nothing. Same with a Video EEG. I'm sad and tired and need to know what's wrong with me.

Thanks in advance!
3 Responses
Avatar universal
I don't have any ideas for you but if you post this on web md migraine community page there is an expert there that could answer some of your questions.
I hope this helps and that you find the help you need.
Avatar universal
My husband suffers from different types of migraines 24/7 and has the ringing in his ears, says it's the sound of a seashell pressed against the ear. I am not a doctor so cannot diagnose your issues but will say that you have to keep trying. We have been in and out of 5 hospitals, travel 3 states to see his Dr and will keep trying. Even Mayo Clinic rejected us because they couldn't do anything that wasn't already tried.

Try Cleveland Clinic. We have had good experiences there and found a great Dr who is sticking with us until we find at least some relief.
764912 tn?1322715443
So sorry you are running into such trouble getting help, it can be very frustrating.  I do hear Cleveland Clinic is great.... I saw a Dr at Mayo who moved there, Dr Steffan Dupont he is a neuro...he is wonderful.

Best of luck and keep us posted !
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