Angel

@miss_angel051
Community Voices

Nervous 😟

<p>Nervous 😟</p>
20 people are talking about this
Community Voices

Nervous 😟

<p>Nervous 😟</p>
20 people are talking about this
Community Voices
Alexis

How is the Kate’s Farm formula??

<p>How is the Kate’s Farm formula??</p>
1 person is talking about this
Community Voices

Neutra-Phos or PHOS-NaK

Looking for anyone who has to take neutra-phos or PHOS-NaK supplements and has tricks to getting it down. It’s disgusting. It’s “fruit” flavored so I’ve tried mixing it in with everything I can think of from juices to yogurt and applesauce, even protein drinks. The flavor is so overpowering I can’t get it down without gagging. I’m supposed to be taking it 4 times per day. I’ve already tried pills (I didn’t absorb them) and I’m also on TPN with an extremely high amount of phosphorus (my body just wastes it) so it’s pretty much my only option. Any advice is welcome! SN: I’m allergic to citrus/pineapple, so OJ is out. #MultipleSclerosis #AutonomicDysfunction #Malabsorption #TPN #Portacath #AutonomicNeuropathy #AutoimmuneDisease #Gastroparesis #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #FanconiSyndrome #OrthostaticHypotension #Hypoglycemia #hypophosphatemia

4 people are talking about this
Community Voices

Neutra-Phos or PHOS-NaK

Looking for anyone who has to take neutra-phos or PHOS-NaK supplements and has tricks to getting it down. It’s disgusting. It’s “fruit” flavored so I’ve tried mixing it in with everything I can think of from juices to yogurt and applesauce, even protein drinks. The flavor is so overpowering I can’t get it down without gagging. I’m supposed to be taking it 4 times per day. I’ve already tried pills (I didn’t absorb them) and I’m also on TPN with an extremely high amount of phosphorus (my body just wastes it) so it’s pretty much my only option. Any advice is welcome! SN: I’m allergic to citrus/pineapple, so OJ is out. #MultipleSclerosis #AutonomicDysfunction #Malabsorption #TPN #Portacath #AutonomicNeuropathy #AutoimmuneDisease #Gastroparesis #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #FanconiSyndrome #OrthostaticHypotension #Hypoglycemia #hypophosphatemia

4 people are talking about this
Community Voices

I really can't figure it out. The port is so helpful but also like really bloody stressful because I have to access and deaccess every use because i'm allergic to the adhesive in all of the covers. To top it I used to be okay with needles like I didn't like them but I didn't have a freaking anxiety/panic attack everytime I got blood work or needed a shot ect. Then my mom keeps telling me that I just need to do it because I know the fluids will help me. Like its a freaking cure all and don't get me wrong I am beyond gratful for the fluids but seriously sometimes my body is just tired of fighting itself or whatever and wants a break! And thats why I feel like crap. No I don't want to access even though I know it will help my body because I don't want to have a panic/anxiety attack tonight. I really don't know what to do. I love my mom and I know she means well but I really wish she would actually listen to me for once... #chronic illness #POTS #fearofneedles

4 people are talking about this
Community Voices

F Mayo Clinic

Right now my emotions are pretty high, so this will likely be more intense and extreme than reality.

I’ve been trying to figure out what is going on with my health. My diagnosises are all undifferentiated, unspecified, believed to be, or I don’t know. Every doctor is at a loss, they can only help with their specialty, but no one is able to explain what’s going on. Both doctors and insurance have recommended going to the Mayo and Cleveland Clinics, so I reached out.

I’ve had only good experiences with Cleveland, but the Mayo Clinic really rubbed me the wrong way. First sign was I couldn’t submit the appointment request because there was an issue with the captcha on their website. Finally I got things set and talked to a representative who set everything up. She basically said that I would be going to see their Internal Medicine group, and I just needed to fill out one more form, so they could make plans for me to visit. I completed the form and that was that.

Last night, I got an email that basically said they were denying me an appointment and to work with local doctors (that’s what I’ve been doing!). They get your hopes up just to knock it down, there was no comment that an appointment was not guaranteed. I just want answers, and I guess I got my hopes higher than I thought making this feel worse.

The email is from an unmonitored inbox and doesn’t explain anything. I have no clue if it’s just because they couldn’t fit me in but applying a year from now would achieve different results, do they think my case is too hard, do they think my case is already well managed. They know nothing about me besides a list of symptoms. No medical records, no discussion, nothing besides words on a page.

I get that they are busy. I get that they help a lot of people, but they seem to forget that the ones that they don’t see are also people who are struggling. A call or personal email would have made a difference. They have no knowledge of me and I have nothing of them because the application process is cold and disconnected. Maybe it’s to help those making the decisions of accepting or not stay mentally sane, but it’s another person on the other side. You never know if Mayo Clinic is actually their last hope. I’m thankful that I will be able to be seen by a doctor at Cleveland, but this is affecting me mentally more than I thought.
#Undiagnosed #Depression #EhlersDanlosSyndrome #ChronicPain #RareDisease #Migraine #AutonomicDysfunction #UndifferentiatedConnectiveTissueDisease

11 people are talking about this
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Do I need a feeding tube?

To answer the question I think I need a feeding tube. But I’m not a doctor. I have talked to my doctor about it and he said I don’t need one because I’m not underweight. But I can barley keep things down and the nausea is insane when ever I eat or drink small amounts. I don’t know what to do anymore.
#Gastroparesis

9 people are talking about this
Community Voices

Hey Mighty Fam🙋🏼‍♀️

Anyone else notice their Gastroparesis flares when the weather starts to change from summer heat to autumn chill?

I've had this issue for years but it was always ignored by doctors until this time. Luckily my awesome PCP knew right away what I was describing & started me on meds to help. So far it's been okay but I noticed as the weather is changing my symptoms are a bit stirred up. I have 2 doses PRN available each day & so far have only used the maximum dose one day. I'm just relieved that after 17 yrs of suffering with no answers & no help I have both!

Any suggestions for temporary relief during the weather change would be much appreciated!

Thanks All! & Much Love💞

Love💗, Luck 🍀, & Lollipops 🍭

#Gastroparesis

4 people are talking about this
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Does anyone get facial tingling?

I have all sorts of neuropathy, some from back/disc stuff and some that is something else ..? Rheumatology tested for auto immune stuff when uveitis was discovered and nothing definitive. Need to see neuro. T is just so hard to have a lack of diagnosis/help for any of it. And they have been saying it sounds like Fibro no matter what, but primary care doctor wants to keep watch for lupus or MS due to variant symptoms. Ugh just so frustrated and scared all the time because there is constant pain and sporadic neuropathy, but this new facial tingling has me extra freaked. Thanks for letting me get that all out. #FibromyalgiaDiagnosis #Fibromyaliga #Neuropathy

5 people are talking about this