Medical Treatments

#MultipleSclerosis
Im on monthly Tysabri IV’s for MS. My insurance didn’t want me to be at the hospital anymore. I guess the “blue shield” didn’t think it should be their “blue cross” to bear and got tired of my having MS and the cost of a drug that has truly been my MS knight in shining armor. They don’t seem to care about my wanting to stay where I’ve been for almost 4 years & w nurses who make a monthly IV actually enjoyable and dare I say fun! So I had to switch from my hosp infusion clinic to a cheaper place. The place does look really nice but I did get a little headstrong and felt that if Im the one stuck with an incurable disease & I find a drug that is working wonders for me, I should be able to pick who and where I go to get an IV stuck into my arm for two hours every month!!!! Well, I was wrong! So, I picked a place from the options they gave me and long story ‘short’, I’m supposed to get this medicine every 4 weeks exactly and i’m now two days over (52 hours past, to be exact) when I should’ve had it. It’s a Saturday, nobody got back to me today, so I don’t know if I’ll even get an appointment by Monday.
Is anyone on Tysabri that has had to delay an appointment? Does anyone know how long you can wait? Are there are any health repercussions? I haven’t had a flare in almost 4 years and I thank God for that and so many other things. BUT I’m not about to risk having a flare because some insurance company thinks my disease is too expensive for them! Forgive my attitude, I’m stressed, scared, and frustrated with the insurance company not realizing that this should be more about human interaction and not something mandated by their corporate accountant!
Sorry for the frustration (shockingly I held back my scared anger quite a bit) but I’m very nervous. i’m choosing frustration and anger over tears because tears won’t get me an appointment. Venting to strangers may get me answers, and also makes me feel better, that way I don’t rob anyone the wrong way that is in control of my medical treatment. So if anyone has any answers, or personal experience with this drug, I’d be so very grateful. Thank you!

Love to all!♥️

#Suicide #MentalHealth  #ChronicIllness  #Abuse  #MedicalTreatments   #treatment  #TreatmentresistantDepression   #Depression  #Anxiety  #BorderlinePersonalityDisorder #BPD   #PTSD  #Crisis  #Hospital  #Inpatient   #Disability  #Fibromyalgia  #ChronicPain  #Pain  #Support  #Spoonie  #Discrimination #help
Have you ever been taken away and all your rights are taken from you by force? I have. And let me tell you it's not enjoyable. They do it with a mask on saying "We just want what's best for you." instead they are saying "We want your money now that you have insurance, and we don't want you to sue us." See, I went to a regularly scheduled appointment. And they asked how I was, I was honest and open and said I was frustrated with the situation of losing my best friend which had me very distressed. Well, after this they told me I was in a crisis and that I needed to go to the hospital. I said excuse me? I had JUST gotten insurance and so I went to the appointment with in mind I would receive help with medication. Well nope, she refused to prescribe me meds and called the police. YES, the police. I was forcibly taken, they wouldn't discuss things with me, wouldn't listen to me, wouldn't let me choose what was BEST for ME. I called my boyfriend with the tiny amount of battery I had in my phone- told him they were taking me away crying tears falling wanting to scream. He wasn't allowed to be with me and they wanted me to go in the back of a police car. I refused as I am NOT a criminal. But the police followed me in a social worker's car. I went to the hospital and I wasn't allowed to see any doctor from the BHU- only ER nurses. They decided for me, my boyfriend tried to talk on my behalf and they threatened to arrest him if he didn't leave and not come back. He didn't touch anyone or threaten anyone besides saying we will sue if they take me illegally. I had no plan of action, I said if I wanted to end it I would have. I said I always could but that my boyfriend is almost home with me 24/7 and that I already have a safety plan in place, I have resources to call, and I even went willingly to my scheduled appointments. I said that I have had thoughts in my head since as long as I can remember... since damn childhood and expecting them to just "poof" is pointless. I had previously gone to the hospital WILLINGLY to get help- they denied me help sent me home saying I was just having anxiety after I said I was suicidal.

[[CONTINUED IN COMMENTS]]

Just wondering whether my experience of the struggle to access both physical and mental health care is a glitch in the system of my hometown or a much bigger issue...

For the past 12 months I've been back and forth from my GP regarding unexplained exhausting fatigue pain migraines dizziness and a whole host of bizarre symptoms. After about six months I got 'diagnosed' with #ChronicFatigueSyndromeampME - I use the inverted commas because I never met with the specialist clinic who diagnosed me... Since then, it's been a massive battle to get any form of treatment or even medication reviews. The CFS specialist clinic discharged me without consent because my mental health was "too bad" which I feel was a secondary health problem arising from losing my job due to CFS/unexplained symptoms and feeling ill all day every day for the eight month wait to go to the clinic. I got put on some antidepressants by my GP who tried to refer me to a psychiatrist to review whether the medication was making me worse (spoiler alert: it was) but the referral was rejected because I had "too many physical health problems". The mind boggles at this catch-22 situation!

Basically, I am just looking to see whether this kind of #medicalaccess is just an incredibly infuriating practice in my area or whether this is a shocking failing of the chronically ill community at large? I am working on a story about improving #accesstohealth so would love to hear from anyone who feels unheard in their experiences of accessing the #NHS

#MedicalTreatments   #ME  #DoctorsDontCommunicate

I had two drains coming out of my stomach area and kept telling the nurse that something was hitting my lungs, they thought it was just my pancreas expanding. Long story made much shorter the drains needed to be pulled about 2 inches back out. Has something like this happen to you? #DoctorsDontKnowEverything !

I've been told by my doctor for years that CFS isn't treatable or curable. Yet, when I was denied disability, they made it sound as if part of the problem is that I'm not being treated for it. While talking to the judge, my lawyer asked me what treatments etc there are for CFS and I said none as told to me by my doctor. Doctors know different things. Is there something I should be discussing with my doctor, or is this just ignorance from the legal system? #MedicalTreatments  #CFS #ChronicFatigueSyndrome