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A little medical advice, please...


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Jim,

All this news about your wife is quite worrysome. I'm glad you are working so hard to do all of this research and to get the straight story. In a way, i know thats just the natural thing to do, but you're doing a kick ass job of it.

If you are looking for more doctors to consult with, I just happen to know a neurologist who specializes in MS and, I believe, similar conditions. I serendipitously met him through my crazy liberal church. Actually, he happens to be a really, really solid piano player-- he'd be a monster if he wasn't always on call. But, you might want to just consult with him and get an opinion from him. He's easy to talk to and not the kind to keep medical information from his patients, so he might have some useful insights for you. His name is Herman Sullivan; you can reach him at HSullivan@mmpc.com. I hope he can help.

Hang in there and keep asking questions and seeking answers. I hope you figure this out as soon as possible and you can start treating her ailment! I'm keeping you in my thoughts and I hope to see you on good terms soon. Take care!

--Jason

Now that's a hell of a first post :g . I'm sure Jim will be touched when he sees it!

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And what is the latest on Meester B3's wife? I hope she's better.

Your wife too Joe G.

In my thoughts, dB.

We have an appointment this afternoon with the neurologist again and one more MRI tonight of the neck.

Alison has been feeling better. It seems like each day a different symptom takes the forefront. Everything is still pretty much there, but for instance yesterday the feeling of constriction in her throat took center stage, today the numbness in her left face is up front, on Sunday it was a headache, etc. But she has more energy and is in better spirits.

I guess this whole thing could be viral afterall. She had a Evoke Visual Response test yesterday which is a test for MS. We'll be asking the doctor how that came out today, for sure.

Thanks to all for the well wishes!

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We are going to an Ear, Nose, and Throat specialist on Monday. The neurologist cannot find anything wrong. Every test she's done has turned out normal.

Since there is a weird strangling sensation in her throat, the neurologist thought he'd send us to the ENT. I am still researching other neurological clinics to try and get into. She is feeling ok lately, but today she's having a sort of "relapse". She worked too hard yesterday cooking, serving, etc.

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Geez I'd missed this thread while traveling....sorry to hear it. My initial reaction was that it sounded eerily reminiscent of what happened to our 30-year-old next door neighbor on X-Mas eve three years ago. She'd been down at the gym working out (doing some gymnastic moves) and developed a headache later in the evening..then the dizzyness and all the rest of it. There was blockage of the artery in the brain but it was too difficult to get at and they left it there but thankfully it dissolved itself. But based on your most recent posts seems as though they've ruled that out...so hopefully they zero in on it when you have the Mon. tests.

My wife's advice is to be the best case manager you can be, have multiple copies of everything, and bring them along every time you visit a new doctor (or even your own at first -- don't need to tell them you don't trust their record-keeping until they don't have everything). Pester people, (politely, but firmly) and never hesitate to get a second or third opinion.

Communication from the folks who do the scans and read them back to other doctors is not necessarily timely (or on your schedule) so never presume that this kind of information has been transferred.

Bottom line, ask, ask, ask. Some of the doctors best work is when they consult with each other -- adding knowledge and brainstorming -- so if nothing else, ask the various specialists if they would mind having a conference call (set up by your primary Dr. )

Don't worry, they'll figure it all out and you'll be good to go.

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....

Communication from the folks who do the scans and read them back to other doctors is not necessarily timely (or on your schedule) so never presume that this kind of information has been transferred.

Bottom line, ask, ask, ask. Some of the doctors best work is when they consult with each other -- adding knowledge and brainstorming -- so if nothing else, ask the various specialists if they would mind having a conference call (set up by your primary Dr. )

Don't worry, they'll figure it all out and you'll be good to go.

Weizen makes some excellent points. My Mom's Cancer was first noticed a YEAR before by a radiologist when she had a CAT scan after Heart problems, yet no one ever bothered to read the report. Also, her Oncologist has been great consulting with the Doc giving her Radiation, the Kidney specialist, any doctor she has seen in the past year.(They always say they have talked to him before she came in) Good doctors consult with each other, they don't just make a guess and stop there. Best of luck, and I'll keep saying some prayers for your wife.

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I'm back, reporting under Jim's name...

Monday we saw the ENT. He suggested I have more testing (what do ya know!) to evaluate my inner ear. That is scheduled for this Thursday morning. I have been having problems with dizziness and pressure in that area. The dizziness is similar to the rocking of a boat. It is just enough to keep me feeling crappy. Riding in the car is the worst. The ENT also found a symptom of a symptom. Acid reflux. My nerves are getting to me and causing my throat to feel raw. Not good. I will take the meds he perscribed, but I hesitate adding potential side effects to all my other issues.

We finally will follow up with our primary care doctor on Thursday afternoon. This is the man I only saw for 5 minutes who sent me to the ER. But, in order to get my short term disability extended, I have to touch base with him. Perhaps he will have some more leads and another referal for us. Then, it is back to the ENT to learn of the test results.

My short term disability insurance carrier may refuse payment if the doctors don't give a specific diagnosis. So far it is unknown. No wonder my stomach is churning. I'm off work, on reduced income, Blue Cross calls here after every test asking how I am if we know anything yet, the Disability people are on our case, we have tests and appointments nearly every other day, and I haven't had a symptom-free day in a month, and we are no where closer to finding an answer.

How do I feel today? The numbness & tingling in my face is persistant. It is in my entire jaw area, left and right, it goes into my neck and chin and up into the left cheekbone. My tonge has been soar for about 2 weeks. It too is tingling and aches by the end of the day from talking. The tightness sorrounding my neck comes and goes though there is constant pressure in my Adam's apple front and back. Headaches are common and I sometimes have pain behind my left eye. The other day is was a horrible stabbing pain. Luckily that didn't last long. Sometimes my eye is sensitive to the air and light. It has had a cloudy haze of vision since this all started. Fatigue is another big problem. I use to think of myself as an energizer bunny. My batteries are now ca-put!

That's the news for now. Thanks again for all your interest in our situation. We will find the answer!

Alison

Wife of B3Groover

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