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Avatar universal

13 specialists and no solid diagnosis to date - 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
787406 tn?1339206783
Have they checked you for undifferentiated connective tissue disease?   I also have ocular migraines and tinnitus(the ringing or pulsating in your ears. medications for migraines can stop the ocular migraines and there is no cure or meds yet for the tinnitus.

My step-daughter is bi-polar and has the depression and has been on many of the medications you have been on. She too is one that is always concerned about her weight and gis fixated on it constantly, she is 25 years old.
1042487 tn?1275283499
I think medical conditions can be ruled out. Sounds like anxiety see GAD to me which might correlate with an underlying depression.

You symptoms could also be completely related to your behavior and body's answers to such behavior. Skipping meals and sleep is not good, extreme stress is not something that's gonna help.

You are seeking for answers that are maybe more related to you behavior and/or psychology more than a medical condition itself and thinking you have a medical condition will only make the symptoms worse as it raises your anxiety level.

Low BP can cause visual disturbance as skipping meals and night of sleep will do (I'm not telling you are skipping night of sleep but any skipping to the body is not good). Weight loss us most likely due to skipping meals and you low BP might also be related to an unhealthy diet too see bad behaviors for your body.

I would recommend supplementing yourself with vitamins and minerals (including omega-3 fatty acids) at least your body will have another something to rely on when it comes to getting the energy, metabolism and brain to work in a good way.

Avatar universal
dear ISOHelp
i am so sorry it is taking so long to get a diagnosis. i don't recall if you said
exactly how long but you sound exasperated. My self was dx with ms for close to 15 years and just this year decided that there are too many other symptoms outside the realm that they want to look at other areas. yeah, and it only took 2 years to get the firs dx. what i am trying to say is, you are not alone so i hope you can find comfort in knowing that you are with a great group of people that are trying their best to comfort each other diagnosed or not. the important thing is to hang on, although i know how hard it is to function not knowing exactly what is wrong. there is a forum group here actually set aside for those of us in "the undiagnosed limbo land". i am sorry i can't help with your syptoms bt yp my find someone that is going through the same symptoms you are. please dont give up and welcome aboard!
it may be a bumpy ride but at least we are in it together!!

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