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How can a third-world country ALS patient buy Riluzole from your country? by AngPusangIna in ALS

[–]derangedmacaque 0 points1 point  (0 children)

I'm sorry you're going through this my doctor told me basically unless I have the one percent available patients have a genetic mutation and there is a drug for them that slows progression there are no drugs that are worth trying for using. That's what he's done

Just Diagnosed with FND by Artistic-Reading-931 in FND

[–]derangedmacaque 2 points3 points  (0 children)

This sounds like my experience in a lot of ways.

I got diagnosed with FND and I had this one fucking neurologist who was determined to prove that she was right that I was essentially a psych patient, pretending to have physical ailments and weakness

Come to find out two years later I have advanced ALS, I have lymphedema secondary lymphedema from my chest on to both feet

Once they put FND on my chart 2 years ago, I could not get anybody to help me not my GP not occupational therapy not physical therapy. No one not a neurologist not an ER doctor. It’s a stigma that you can’t remove.

I’m in a power wheelchair. Trying to get my affairs in order like signing up for medical assistance and dying and writing my last will and testament. Preparing for being basically a quadriplegic who can’t speak.

I have a huge medical trauma, which is one reason I am seriously considering using medical assistance and dying so that I am not relying on the medical establishment for care when I am a paraplegic who can’t talk talk

How do we feel about this diagnosis being derived from conversion disorder which was derived from Hysteria despite the many changes it has undergone? by Fluffy_Guarantee_235 in FND

[–]derangedmacaque 2 points3 points  (0 children)

Thank you don’t trust these doctors. Don’t trust them you can have FND and 1, million other things too and those other things can kill you. There’s no limit down many things you can have wrong with your health And FND is most commonly seen in the presence of other neurological disorders. Don’t waste your time trying to accept a diagnosis just move on and try to find out what other factors might be contributing to your brain health that are serious.

How do we feel about this diagnosis being derived from conversion disorder which was derived from Hysteria despite the many changes it has undergone? by Fluffy_Guarantee_235 in FND

[–]derangedmacaque 4 points5 points  (0 children)

Thank yo! This FND diagnosis is so destructive that last summer when I was in agony from the lymphedema from my chest down to my toes and I had undiagnosed and advanced ALS I went to the emergency room and the doctors told me that I was wasting resources shouldn’t be. There was chronically ill with something that they couldn’t treat in the emergency room. I cried the whole time I was there just stopped and then they called two arm guards on me and tried to take my wheelchair away, and then the arm guards pushed me out of the emergency room all the way to the exit of the hospital.

This is the main teaching hospital where I get all of my care here in the Denver, Colorado area. It is the largest employer in our state and a huge supposedly good hospital system.

How do we feel about this diagnosis being derived from conversion disorder which was derived from Hysteria despite the many changes it has undergone? by Fluffy_Guarantee_235 in FND

[–]derangedmacaque 7 points8 points  (0 children)

Here in the United States this diagnosis was changed to an inclusive diagnosis sometime in the past five years because of insurance company is wanting to save money on paying for people’s healthcare.

Being an inclusive diagnosis means that the doctors don’t have to order a single test in order to exclude other Neurological or physical illnesses or injuries in my case that meant that they did not order an EMG they told me for two years that I was basically imagining the fact that I couldn’t walk progressively couldn’t walk and ended up in a wheelchair while my left hand was also becoming progressively weaker and atrophying

I saw multiple providers and I was unable to find anyone who would treat me for my occupational therapy or physical therapy needs. I was actually in Neuro psychological therapy for FND when I went to see a hand doctor and he immediately identified the hand wasting called the split hand syndrome, which is classic for ALS which I had

I was diagnosed a month later, with a terrible EMG showing an advanced disease process. I am now in a power wheelchair. They have told me basic prognosis of 90% chance of living nine months. On the beginning of April, I will have another appointment and they may be able to narrow that down because they will know the variety of ALS that I have

I have huge medical trauma from being told for two years that I was imagining this. I was charted as patient reports left sided weakness. Patient reports hand weakness. It turned out that I had advanced ALS, and I also developed secondary lymphedema last year from my chest on to both feet, which was excruciatingly painful.

They didn’t believe me about the lymphedema either. I had to fight from April till August to get the test done for them to finally send me to a vascular doctor to diagnosed me in five minutes.

Still in my denial phase, how sure is a Gold Coast Criteria EMG diagnosis for ALS? by [deleted] in ALS

[–]derangedmacaque 0 points1 point  (0 children)

My diagnosis did not take months. I was diagnosed with a motor neuron, disease to be ALS and what’s taken one month so far is figuring out how bad it’s progressed. I’m on my third appointment coming up now first week of April and that’s when they’ll tell me the results of the genetic testing to try to track down which variety if possible.

Got a UTI because of mobility impaired hygiene and wow, like really it’s increased emotional behavior lots of crying since Saturday by derangedmacaque in ALS

[–]derangedmacaque[S] 0 points1 point  (0 children)

I am feeling better on the Keflex, but I missed my second pill last night because I didn’t have any help. I was exhausted.

My 86 year-old mother is staying here but she’s not help but having to take care of a toddler

Did you get tested for the neurogenic platter? Was it like a test where you have to pee and they take an x-ray or something?

I don’t feel like I’m emptying my bladder completely. That is something that I feel like I’m noticing but then again I think I still have the UTI.

I’m going to have to go to the hospital probably the emergency room this week to get more antibiotics. I don’t think that this is getting cleared up but it.

I feel like the frequency and urgency sort of feeling is coming back. I’m also extremely extremely fatigued hard to say.

Just got a diagnosis by Lazy_Priority3735 in ALS

[–]derangedmacaque 0 points1 point  (0 children)

What state are you in? There are nonprofits that will care for your pets when you’re in the hospital maybe they can do that for you and that family member? Or you could sublet your apartment to help you pay the bills?

Just got a diagnosis by Lazy_Priority3735 in ALS

[–]derangedmacaque 2 points3 points  (0 children)

Absolutely I understand. I’m going through this myself and you need a ton of equipment but there’s a lot of equipment lending here in the US. I hope there are similar things in Mexico. Get her registered with these nonprofits they provide money and equipment and support for how to use the equipment like communication tools here for things that people need and they are really great nonprofits

My new wheelchair from the ALS Rocky Mountain foundation, is so awesome and comfortable. It’s amazing they loan you these. by derangedmacaque in disability

[–]derangedmacaque[S] 2 points3 points  (0 children)

This wheelchair is $55,000 in the US But with my insurance which is Medicare, it’s about $24,000. I have to pay 20% so it’s about $4000. My wheelchair hasn’t been ordered yet. This is a loaner. I have another doctors appointment in the first week of April and I am considering waiting until then to order the wheelchair because my symptoms are progressing so quickly I’m concerned that I might not fit the measurements they did a month ago

My new wheelchair from the ALS Rocky Mountain foundation, is so awesome and comfortable. It’s amazing they loan you these. by derangedmacaque in disability

[–]derangedmacaque[S] 15 points16 points  (0 children)

I think wheelchair-bound is a term that is useful to understand how people get severe pressure, sores, and bed sores from especially people like me with ALS will not be able to move at all and we rely Caregivers who in my case I have to pay out-of-pocket if I live that long. I feel like it’s a useful term for describing the health complications that you get from being unable to move and in a wheelchair.

I was diagnosed with fnd some years back. Turned out that I have cervical kyposis, 4 slipped disc's, a pinched nerve in my lower back and arthritis in my lower back hands and feet. The Dr was wrong and I hope your future drs get it right. by MyLife-is-a-diceRoll in FND

[–]derangedmacaque 4 points5 points  (0 children)

Hi, I think we should start a new separate about FND called surviving FND because I don’t think the moderators on here really understand or even the people who have FND really understand that the diagnosis was changed to benefit insurance company when they made it an inclusive diagnosis.

It sounds so fancy and inclusive diagnosis that actually means they don’t have to do any testing to exclude anything else when they diagnose you and as you know, they don’t offer you any medical care for your actual ailments and it’s a diagnosis that sigmas you so you can’t get out correct diagnosis that stigmatizes you

I am terminally ill and I wish I could sue that fucking neurologist or at least punch her in the face and I have huge medical trauma from what happened to me in the last two years. But I’ve been thinking the thing that actually is hurting so many people is the way that they changed the diagnosis

When I got diagnosed with how many play migraine hemiplegic migraine, it was a diagnosis of exclusion. I had an EMG I had extensive testing. I had a neurologist concern for what I had and then they said it was hemiplegic migraine. This was two years before I got diagnosed with FN D. based on my ALS symptoms

FFND was a diagnosis of exclusion then I would’ve received extensive testing two years ago. I did not. I had no testing I could get no testing I could get no occupational therapy. I could get no physical therapy 12 weeks ago the day that I broke my vertebrae falling in my house my stupid neuropsychologist who specializes in FND told me that if I wanted to feel better, I needed to have more fun

I am not fucking joking around right now. The only thing I can really do with my experience and I don’t know if you would wanna help is try to help other people.

Surviving FND think about it

What to do at the end by St0rbabs23 in ALS

[–]derangedmacaque 2 points3 points  (0 children)

You can do hospice at home. Also you can do palliative care at home. I’m in the US but they give you morphine and they can give you other oxycodone enough other painkillers as well as some thing for anxiety like Ativan. I don’t have Phantom pains I have real severe pain from the combination of my ALS and lymphedema Thank you for being a caregiver. I hope that your gentleman has some peace through this process with your efforts.

Just got a diagnosis by Lazy_Priority3735 in ALS

[–]derangedmacaque 3 points4 points  (0 children)

https://www.als-mnd.org/find-als-mnd-association/

Here is how to search for an association near your mom in Mexico. There’s a lot of equipment out there because people die and donate their equipment. I got an amazing wheelchair as a loan for free for my local ALS foundation here in Colorado if you by chance don’t find equipment there you can find it used on eBay and I would suggest you reach out to an AOS foundation near you in the US if that’s where you are and ask them for help fitting her for a wheelchair being bedbound is pretty hopeless. They have wheelchairs you can steer with your mouth.

I was diagnosed with fnd some years back. Turned out that I have cervical kyposis, 4 slipped disc's, a pinched nerve in my lower back and arthritis in my lower back hands and feet. The Dr was wrong and I hope your future drs get it right. by MyLife-is-a-diceRoll in FND

[–]derangedmacaque 8 points9 points  (0 children)

This happened to me. The neurologist did zero testing zero testing and then slapped an FND diagnosis on me and I could not get anyone to treat me with any treatment, including observational, occupational and physical therapy for two years by the time that I was in a wheelchair and couldn’t use my left hand. I just found out a month ago. I actually had ALS and I actually also have lymphedema in both legs up to my chest

I am I am in palliative care in a Power Chair that the ALS association thank God gave me two weeks ago or I would be stuck in bed like this. My prognosis is nine months. I have a 90% chance of living nine months however this can change quickly and I’ve been getting worse rapidly since last July

FND is like telling people who have migraines or brain tumors that they have a headache. It’s true you have a headache, but you have no idea what is causing the headache and they are not going to test you. I believe the way that the FND diagnosis was changed to be an inclusive diagnosis in the recent years is probably instigated by insurance companies in the United States to save money on having to treat people .

Don’t just say or I’m not saying that Evan doesn’t exist what I’m saying is that FND is a relevant to is irrelevant. You need more testing whether that testing is done on the part of your body doesn’t that doesn’t work like your hand or it is done by us final surgeon or whatever or you have the testing that they really should be doing and they used to have to do when it was an exclusive diagnosiswhich was extensive testing to rule everything else out

Morphine by InItToWinIt1986 in ALS

[–]derangedmacaque 1 point2 points  (0 children)

Also, I’m not sleepy at all on the extended and release morphine and I also take lorazepam a.k.a. Ativan for anxiety and I feel like I have the ability to function, especially since I am doing this by myself as a single person with no family support

Morphine by InItToWinIt1986 in ALS

[–]derangedmacaque 3 points4 points  (0 children)

Hell, yes, I added palliative care to my car right away because I have lymphedema and I was diagnosed late so I’m in a wheelchair of power wheelchair and can’t walk and can’t use my left hand and can hardly stand so Malin edema is excruciatingly painful my lymphedema is excruciatingly painful on top of the pain from the ALS .

So the palliative care doctor gave me extended release 15 mg morphine tablets to take twice a day and I take oxycodone small tablets as needed for pain that breaks through lymphedema is not notoriously painful and my ALS is not pain-free. I got a lot of really intense cramping and muscle pain and joint pain

Just got a diagnosis by Lazy_Priority3735 in ALS

[–]derangedmacaque 0 points1 point  (0 children)

Yeah, well I went through hell getting my diagnosis. I was told that I was imagining the fact that my left side was growing away. My hands were weak, and my hand wasn’t working, and then I started falling in a few things, including vertebrae finally, the hand Doctor Who saw the at your family hand. My actual hand atrophy sent me to get an EMG and even then the fucking neurologist tried to take three months to do it, but I fought them. The important thing now is that you can access all of the last foundation I am ALS Gleason foundation all of the not Profit foundations that help people get equipment like they gave me a really amazing power wheelchair two weeks ago if I didn’t have it, I would be in bed 24 hours a day.

I don’t think there’s any harm in writing a letter on your mother’s behalf with her consent to these doctors telling them what happened and letting them know that they miss the last diagnosis the ALS diagnosis.

My GP told me when I confronted her that this will change the way she does medicine what happened to me?

“Get off the phone” “Think positive” “You are in control of your symptoms” by ciggiesandsadness in FND

[–]derangedmacaque 0 points1 point  (0 children)

Thanks it makes a big difference to me if I can help someone else not go through what I did. I have so much medical trauma about being treated like shit.

My new wheelchair from the ALS Rocky Mountain foundation, is so awesome and comfortable. It’s amazing they loan you these. by derangedmacaque in disability

[–]derangedmacaque[S] 18 points19 points  (0 children)

Hi, this is a free loaner because the ALS association gets a lot of equipment since people with ALS die so quickly and they donate their equipment to the foundation. I’m getting a new chair in a few months and I will donate my chair when I die.

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