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what could this be?


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Old 04-29-2014, 06:52 AM   #1
diagnosisx
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what could this be?

Since 2007 I have had chronic vertigo. Since 2011, I have developed a severe lung issues which remain undiagnosed fully. I have been so out of breath that I am unable to speak or walk. I am bedridden and at times using a wheelchair. But for the life of me I cannot walk. My airways always feel tight. My chest is always tight. I have seizures at night. The seizures are so debilitating and out of control and I have about 2 per night. I saw a neuro and he said I have nocturnal seizures. I cannot laugh or cry at all because I faint. I cannot be in heat or humidity because I faint and lose breath even worse. I have sensitivity to both light and focusing my eyes. The vertigo when I move my eyes to see the phone or TV is too bad so I cannot watch TV or use computer. Someone else is typing this for me. I cannot listen to anything either because I have hyperacusis which is extreme sensitivity to noise. Any noise makes me vomit. Ear plugs won't do a thing. I wake up throughout the night too. I have pressure in my head and extreme fullness in ears. Middle ear was tested and is fine. I get inner ear tested this week tomorrow I think. I went to hospital for a couple weeks and MRI and ct scans show nothing. They ran so many tests on me and they all show nothing major so far. I'm at Witt's end. I cannot do a thing. No TV no computer no walking no talking no fun no interaction no noise no reading so what am I supposed to do...just lay here 24/7? Guess I have no choice.

 
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Old 04-29-2014, 10:15 PM   #2
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Re: what could this be?

Hi diagnosisx, Im so sorry you are having such severe problems, have you been unable to walk for 3 years?Are you seeing your pcp? When there are various problems & diagnosing becomes such an issue drs like an internal medicine dr, preferably a diagnostician will admit people to the hospital & run tests but also call in other specialists such as a neurologist for seizures,to rule out MS, vertigo & opthalmologist for vision problems & diseases of the eyes,rheumatologist for autoimmune diseases, a pulmonary dr for lungs, ENT for ear or hearing problems, cardiologist for heart problems, hematologists for blood disorders & so on to try to rule out or find the cause of symptoms in their area of specialty because sometimes its one disease or syndrome but sometimes it can be separate diagnoses & each dr will treat each problem found & do follow up care & continue regular testing & can require multiple tests by several drs over a few years to correctly diagnose for example MS as opposed to one normal mri & that rules a diagnosis out forever. Im so sorry that you have suffered because of an elusive diagnosis & hope the drs find treatable answers soon!

 
Old 04-30-2014, 02:40 AM   #3
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Thanks so much for the advice. I will def see those drs you mentioned! They just found out yesterday actually after posting that that I have a strand of lymes which they think or some other tick disease or a fagellen something. If I happen to have separate issues like arthritis, inner ear disease, lyme, vocal chord issues, and eye disease that would be so horrible being that I'm only 31 but I do suspect I have multiple issues. I also damaged my vocal c big time by singing wrong for 28 years. Prob damaged my lungs too because it was so extreme. And as for my inner ear I think that was damaged from loud music. I honestly feel all my problems were brought on by dumb choices and abuse to my body. They ran 4 MRI and no lesion on neck spine and head. I do have four herniated disks though. I had a brain lesion in 2007 but if disappeared. And now I have none detectable on MRI at least. But I never had MRI of my optic nerve to fully rule out ms or even spinal tap. My Dr suspects ms but can't find it and it could take years for another lesion to surface. Ms would truly explain all my issues. My neuro said I have sleep seizures. They admitted me to hospital twice and nothing.....except that they just found Lyme.

 
Old 04-30-2014, 05:52 AM   #4
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Re: what could this be?

Hi diagnosisx, My friend had lyme disease & her dr is an infectious disease dr who is lyme literate meaning he has had more education, training & experience with diagnosing & treating lyme disease & she is well now. Im glad that the drs found something that may help you to get well! What specialists have you seen & are you being cared for by several specialists? When i was your age my neurosurgeon used to tell me that youth equals resiliency meaning that the human body is very resilient, amazing & can bounce back anytime healthy lifestyles are adopted especially when young & 31 is young even after i had been sort of careless with taking care of my health my dr was right, when i started taking better care i got my health back except for a bad back problem, & i hope that you will find good specialists that really care & if this is not happening there are so many gifted drs with so many varied talents i hope that you will wont settle but will find the best fit for you with drs that are committed to your care because i know you want to feel young & be young when you are young!

 
Old 04-30-2014, 08:42 AM   #5
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Re: what could this be?

There is a condition that is common in young women your age that can cause seizures, arthritis, hoarseness, eye problems, inner ear dysfunction and lung problems. It is autoimmune, and can be severe in some people. You need to be checked for lupus, rheumatoid arthritis, mixed connective tissue disease through a rheumatologist. The Dr doing your inner ear testing today may even run some blood tests for this, but a thorough work-up requires a rheum. These 3 conditions are related but lupus is the closest that could explain your symptoms. A neurologist should be taking care of your seizures with medication, not just telling you what they are. Your fainting when you laugh or cry sounds like cataplexy, one of the symptoms of narcolepsy, a neuro condition that makes people very sleepy with sudden onset sleep. Cataplexy can be treated. You need a number of specialists, but first a rheum.

 
Old 05-01-2014, 11:45 AM   #6
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Hi ladybud, thanks for all that advice. I am going to see the rhematologist. I just looked around for one today and awaiting a referral. I think that is a good route to take being that I have so many symptoms. Of course I could have a bunch of unrelated diseases or ailments but I will look into that as well. My eyes are also affected and I can't even get the eye drops because they're so sensitive so I can't test for glaucoma. As for narclepsy I don't actually faint as in fall asleep pass out....I fall down and get out of breath and lightheaded and things turn black and I am not tired.... I read about it and I'm not a tired person and very energetic despite my confinement to a bed! But I was told the laugh thing was my vagus nerve like a vasovagal syncope episode. But who knows.

 
Old 05-01-2014, 07:22 PM   #7
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Re: what could this be?

It is always more likely that multiple symptoms are related to one or two causes rather than multiple problems coexisting individually. Glad you are pursuing the rheum consult. I think you will make some headway with that approach.

 
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