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Community Voices

Sleep Deprived EEG Tests

I’m going to be having an eeg test soon for the first time. I just found out its a sleep deprived one.

Have you had this test and can you tell me your experience with it? I’m wondering why the neurologist ordered this kind (sleep deprived) specifically.

Did it get you and your doctors closer to proper diagnosis? #EEG #testing #Nerve and joint pain #neurologist #Diagnosis #mobility #Tinnitus #Epilepsy #ChronicPain

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Community Voices

Can anyone tell me how long it took you to get into or get on the appointment list for dysautonomia testing? I’m being told it’s a 6 month to 1 year wait minimum if I’m willing & able to drive 4 hours away to Chicago. It’s 1-2 year wait if willing to drive to Minnesota (several hundred miles away and 2 states over). Any other info you can give about it? Thank you for any information or advice you can share.

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Community Voices

Wellness Wednesday and Health Update

<p>Wellness Wednesday and Health Update</p>
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Community Voices

Quick Tip Thursday: Diabetes Should Be Tested Every 1 to 3 Years if You Had Gestational Diabetes

<p>Quick Tip Thursday: <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a> Should Be Tested Every 1 to 3 Years if You Had Gestational <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a></link></p>
Community Voices
Community Voices
Community Voices

#testing and other broken promises

Where we live there is no testing going on. We haven't seen anything the President says is out there for the American people. Heck we don't even have toilet paper, hand sanitizer, aloe, or alcohol in our city. Haven't had any since about four days before the shut down. If we had the stimulus money in the bank I'd order some of the stuff we need to be delivered to our home. When are we going to get testing done? When is everyone going to get that stimulus money? When are the rural towns going to get our needs met?

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Community Voices

Waiting for the morning to come #COVID19 #testing #rarechron

I'm sitting here on day 3 of feeling like crap. I'm sitting here on day five after the unexpected visit of one of my kids. I'm sitting here with my youngest and our two cats and I'm effing terrified.

Five days ago one of the older kids popped over. They brought their new significant other to meet me. I kept asking about health safety and social distancing. I did a rewind repeat for the entire 30 minutes.

This kiddo lives in a county that has positive testing for covid 19. Every question was an affirmation they had NOT been around anyone sick. That those they've been around were fine or tested negative. Before leaving said child wanted a hug. I mean it's my kid i didn't

Kiddo kept saying nothing no symptoms... Not sick...Nothing to worry about. Sigh. Until today. I've been getting progressively worse and my youngest is now starting.
I wrote my other child and asked point blank ARE YOU ...HAVE YOU...TESTED POSITIVE. HAD ANY SYMPTOMS...HOW LONG.
Weeks now. For weeks! A dry cough coming and going. Other symptoms and had not tried to get tested...but is going around out in public and visiting.

Now let me tell you why I'm scared out of my effing mind! My youngest has cyclic vomiting syndrome with aura migraines and abdominal migraines and since becoming a teen the cvs has morphed (like it did with so many) into a beast that isn't all about puking. Its all about so many other symptoms that have become so strong it's a vengeance. My youngest child fits the definition of medically fragile.

Let me tell you part two of this. I have Arachnoiditis/8 herniated discs/fibro/multiple other pain conditions/ high blood pressure/a family history of heart disease and cancer/diabetes/like my kiddo asthma/cluster migraines... I could keep going. I fit the definition of medically fragile.

I break this 3rd part like a defeated pinata. We are alone. No vehicle. No friends available near us. No family within an hour plus ride. Two cats that need care. One is old and partly blind. The other is still a tiny kitten. Our hospital with the only er in an hour's drive CLOSED last Monday!! There is nothing near by for emergencies. There is no one that can take care of our cats take care of my youngest take care and be able to bring us home if one or both of us gets admitted to the nearest hospital.

IF you don't have to go to work then STAY THE HADES HOME!!! You don't know what kind of havoc you will cause by "visiting" people...especially the elderly the disabled the vulnerable!!! If you must go near these kinds of people DON'T touch them!!

I'm terrified and were calling the dr tomm to request a teleconference appointment. Could be nothing...could be covid 19. We are the at risk population. We were lied to by a loved one who knew they had symptoms and came over anyway.

I own part of it cause it's my kid we let them in and i hugged em. However on their end doing this and knowing is tantamount to something seriously freaking wrong!!

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Community Voices

All aboard the roller coaster

Today... was not easy. I went to school felt off had 3 different seizures before they sent me home.... I am studying to be a cosmetologist... I am supposed to be taking clients next week but with the dangerous equipment we use feeling hopeful in school is hard.... I am the girl who has seizures, everyone sees me act off or have one and they act like it inconveniences them.... Almost 4 years, no answers, no leads, no diagnosis just loopty loops of EEG, MRI, Medication, and incorrect doctors blaming me or saying I am faking.... It feels like it gets better and then I am back... here, not knowing, nothing working.... #SeizureDisorder #Epilepsy #Undiagnosed #Seizure #SeizuresSuck #Needanswers #moretesting #testing #wishmeluck

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