Join the Conversation on
72 people
0 stories
12 posts
Explore Our Newsletters
What's New in

Trying Something New

Hey everybody! I am about to get some topical ketamine for my neck, back, and shoulder pain. Has anyone used it before?

Separate from that:
Saturday, I have to get multiple X-rays… lumbar, sacrum & coccyx, and knees. Should be entertaining I’m sure. If there isn’t anything that shows up musculoskeletally, the next step is testing for MS. #ChronicPain #tailboneissues #whatspecialistnext #Needanswers


I’m losing myself

I don’t know what to do anymore. No docs can figure out what is going on with my body and it is progressively getting worse. I am so down and I don’t even know who I am anymore. I have so much to worry about and my son was diagnosed with MS recently.
I don’t know where to turn. #Needanswers #lost #despair #healthworsening #Pleaseprayforme


Trying not to get my hopes up!

I’ve had a rough couple of weeks, mostly with my seizures. I’ve been fighting stomach issues forever, but it has been so much worse in the last year. I have an #EEG next week and a #Colonoscopy the following week. I need some answers…that’s something I struggle with the most. I am tired of doing endless medical testing to find nothing to explain anything. I’ve had enough, so any positive thoughts and/or prayers you can throw my way would be greatly appreciated! #Epilepsy #Needanswers #SoDone #mysteries

1 comment

Mast Cell Activation Syndrome

Can anyone tell me what testing and procedures you had to go through to get a diagnosis for MCAS? What type of specialist did y’all go to? #Needanswers


Need a diagnoses

Since I was little I have always been in pain and tired. Now that I am 27, each day is getting harder and harder to keep moving forward. I feel like I’ve been to every doctor possible, done everything I believe to cut out: my job, types of food, focus on me; but sadly I feel like nothing is working. I feel like I can’t move forward without someone finally telling me what’s wrong.

Every test that comes back negative or doctor I see saying everything looks fine is another blow to my self esteem. Today I feel so lonely in my journey. My husband tries his best but it doesn’t help.

Today I had even more trouble walking and I’m scared that the doctors will find nothing and say it’s all in my head. I know it’s not and I’m tired of fighting. How much more of this pain can I keep taking each day with no answer on how to try to make it better...

I needed to rant but also looking for others who might have had a struggle getting diagnosed and has some tips for me?

#stayingstrong #ChronicPain #Needanswers #TiredofBeingSickAndTired

See full photo

In a very dangerous place for me, numb and walled up.

Yes, i know that my problems are trivial compared to many. I have no one to just listen who is not part of the events. I would talk to my social worker and distance therapist but not a option other than once a month because they are that booked up/ not going to hurt myself, other than mentally or anyone else. I think i’ve talked about my in-laws and their will. That has been a sore topic between my wife and i. I don’t want to move closer but will for her. She is torn between staying or moving.
Just when i had calmed myself over that my wife informs me the property we live at has been sold so new landlord. Wife been dealing with that because she is more extroverted and like able.
She also told me the Pastor of the church my parents, sister’s family and my family are members of, point blank asked why i never at service unless it’s to do with the kids. She told him because i lost my faith and she doesn’t like that i don’t go. We live in close knit community so everyone knows everyone business.
This is also a subject we do not talk about in public. Especially with our son at 9 questions the religion and that really pissed her off because she thought i was telling him stuff. Truth is the opposite. I don’t and actually will stop him when starts up on it. I want my children to make own choices on this.
Also yesterday my son, 9 years old and easily bullied, hit two classmates. It is well known he has a temper that only comes out when he can’t take the bullying and stress for being not like rest of class. Now comes the part that my wife had to take my phone away. When he was asked why he did it the principal, who would rather not have him there and been made clear for last 5 years on that, said he was imagining being picked on and being told by one boy to hit him.
Took him to see the social worker he sees and am told he has ADHD: hyperactivity & impulsively as well as Adjustments Disorder with mood and behavior. We did not get angry with him but took away electronics. We are waiting to hear more of the story first.
Don’t expect any real answers here. Just needed to get stuff on paper.
#BipolarDisorder #numb #LostMyWay #Depression #exhausted #CheckInWithMe #Needanswers


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

2 reactions 12 comments

How can I adequately advocate for my wife in terms of her health? #Needanswers

My wife's doctors seem to have grown complacent with treating her chronic pain. She was diagnosed a few years back with Fibromyalgia and Psoriatic Arthritis, but new symptoms cropping up suggest a possible misdiagnosis. Recently her bloodwork was cited as having slightly elevated levels of CRP (I think), but the elevation was 9X the level in her last draw. Her rheumatologist has left her on the same basic medicine regimen ( Gabapentin, Amitriptyline, and occasionally high doses of Prednisone. She cannot sleep at night, always hurts, and is getting worse. How do I get doctors to actually help?


#docfrustration , #Needanswers, #allinmyhead

Being chronically ill for over 20 yrs now and ongoing visits to doctors and specialists I've definitely discovered the great importance of becoming my own health advocate. Communication via the medical staff is sometimes literally ABSENT!!!! Overall, I'm pretty satisfied with my care team but does anyone feel like their Dr's are thinking all what u r feeling is imaginary? All the tests performed, lab work and still no definitive answers on what's going on. Finding a compassionate, understanding, extremely knowledgeable doctor is, in my opinion, more challenging nowadays. To b honest, I've lost some respect for medical professionals. Not all of them r willing to actually take extra time with their patients and research his or her condition. They r too quick to pass u on to another doctor, then another. I realize they r limited to a certain amt of time with each patient, but many medical facility websites offer patient portals as a way to communicate with their team. Doctors really need to gain that patient/doctor relationship and b continually monitoring patient progress, researching possible answers to mysterious symptoms. I will give u one perfect example: prior to my immune deficiency diagnosis in March 2013, I had multiple lab draws to check various blood levels. I was suffering infection after infection, given tons of antibiotics. Back in 2000, my eosinophil levels were way off and absolutely nothing was done about it. Other lab tests throughout a 13 yr span depicted the same results. If doctors had treated me at the time these levels were so messed up, I'm pretty sure my life would b a lot different today. So sorry for the super long post. Please share any similar experiences and your feelings on the medical community. Thanks for reading.


Would u get a new job if u can’t stand ur current boss?

I really like my job, my coworkers are okay, too. But my boss is sometimes pretty nice too, but he doesn’t understand emotional pain. A friend of my brother was killed. When my brother called me i stared to cry and had a little breakdown, so I left work early. The next day my boss just asked why this bothers me so much. I don’t know if I can work with someone who is so cold and cruel. What if there comes another breakdown because of my mental situation? I can’t control my feelings, but would it be better in another office? #Job #Depression #help #Needanswers #Work

1 comment