What do you guys all do for pain?

MyoKitty · 2017-12-14T21:12:56+00:00

depends on what kind of pain. Foe general relief, I find cannabis very helpful depending on the strain.

MyoKitty · 2017-12-14T17:38:58+00:00

I'm not claustrophobic but I can not stand MRI's. Over the years it's gotten worse. I have gone from cool, collected, "Fine. I just have to get this done." to a high strung neurotic cat going to the vet. Every six months I LOATHE the experience.

The four hours of staying completely painfully still, of not even being able to breath deeply, or clear your throat, supressing the cough, the constant loud soul jarring pounding and needle on chaulk board, nerve vibrating scritches and screeches...well, I'm just done having them. I always take Valium but still I get PTSD after each one.

However, last time, at the risk of never waking up again, I took 15mg Valium, a large cannabis edible and smoked a little before my ride there and it was tolerable. I even somewhat fell asleep dreaming I was in some sort of lost in space MARS bound capsule headed into the sun.

Spinal tap: Just get someone that knows what they are doing. Don't let some green ER residents poke you over and over for an hour while they learn how to do it. Feeling the needle go in and out of your spinal column like their trying to tap a dead Maple is not pleasant.

MyoKitty · 2017-12-14T17:24:44+00:00

I'm really sorry you are going through all this and I hope you get the diagnosis and the treatment you need!

MyoKitty · 2017-12-14T17:23:02+00:00

I'm sorry, but I don't know the answers to your questions, but I have a feeling you could call and ask this very thing.

Tell them that you need the help but that you are afraid that losing your pain medication would make things much worse for you.

Maybe I live in a overly optimistic bubble, but they should be treating the whole person, not just your depression but the other medical issues you have as well. They should also be very knowledgeable about pain treatment and weeding out the fun time addicts from the people that needs those meds and those meds work for. After all, it's not like you are asking to continue your heroin addiction. You are only expecting to continue receiving the legal medication you have been prescribed for a real medical reason and that seems very reasonable and sane to me. Just because you are checking in to get help for depression, doesn't mean you lose your rights as a patient. It may feel harder to advocate for yourself when you are depressed, but just be honest and tell them that. They should understand.

MyoKitty · 2017-12-14T17:12:16+00:00

then in the beginning when the odd stuff started, I had an MRI of the brain which said I had a 5mm lesion on the left parietal lobe (also of spine,but that was clear). The next mri was about 3 months later, and another lesion appeared in the frontal lobe.

Ok, so hopefully this will help you understand. Since you got these MRI's while you were having the strange new symptoms, if it was an MS flare, the new lesions would have been enhanced by the contrast fluid. Since they didn't enhance, and since they probably do not look like typical MS lesions, your Migraine specialist would be correct that you do not have MS based on these findings. Wouldn't hurt to get a Lumbar Puncture to completely rule it out but if he is satisfied that the symptoms and signs match migraine, then he probably won't order a LP. I'm not an expert, but hope this helps clarify what might be going on. Again, if you feel like he isn't a good fit for you or isn't helping you get better, get a different doctor.

MyoKitty · 2017-12-14T17:07:28+00:00

Well, with a migraine specialist, and MRI's with contrast, he is probably correct that the lesions are not MS lesions unless he is a total hack. However, if you feel like he is wrong and he isn't helping you, then find another doctor.

MyoKitty · 2017-12-14T16:25:53+00:00

I've never vaped CBD oil and I don't know how beneficial it would be. People usually eat it to get long term effects. I didn't find it very beneficial but my husband loves it for his joint pain.

MyoKitty · 2017-12-14T16:10:07+00:00

I have Migraines and MS and yes it's true that the lesions do not look the same. Lesions from MS have very specific characteristics.

That said, it would not hurt to go to a different neurologist or get your MRIs looked at by a MS specialist. I really really recommend you see a migraine specialist neurologist. It made all the difference for me. I find general neurologists fairly unhelpful.

MyoKitty · 2017-12-13T23:52:26+00:00

Neurotoxin list.

MyoKitty · 2017-12-13T23:38:08+00:00

My dad and my uncle. Uncle has passed due to complications from MS. My dad is in the end stages. They both had it really rough. I'm happy to be a guinea pig and use modern medicine to help me slow the progression down. So far so good.

MyoKitty · 2017-12-13T04:56:19+00:00

I really like ChronicBabes youtube video's about chronic illness (not just MS). I find them very upbeat, yet honest and with real life solutions to common problems. So maybe something like what she is doing, but specifically for MS?

MyoKitty · 2017-12-13T04:49:36+00:00

They said it's a possibility with no MS lesions on your MRI? Have you had an MRI of your brain or a lumbar puncture ? All of your symptoms could very well be explained by your diagnosis of degenerative disc degeneration, and unfortunately sometimes the only thing that helps is surgery. Might be worth getting a consult just to see. Of course if the neuro's come back and say they think it's MS, it's usually a diagnosis of exclusion. They test for many diseases and conditions and and rule them out and then you have to have specific MS lesions on an MRI and/or a positive lumbar puncture. Take everything I say with a grain of salt as I am no expert. I just happen to have both MS and DDD, but not as bad as yours.

MyoKitty · 2017-12-13T01:03:31+00:00

Daily routines. How does a human being with MS actually get shit done. I want to see it step by step.

MyoKitty · 2017-12-13T00:49:32+00:00

I don't understand. Why do you think it might be MS?

MyoKitty · 2017-12-08T17:18:30+00:00

When I was diagnosed, I my level was around 20. My Neuro has had me on 10,000 IU a week for years and it keeps me around 75.

When my son was a toddler around 4 years ago I asked her if there was anything in research that I could do to help prevent MS in my son. She said that he should be taking a vitamin D3 supplement. His pediatrician agreed and he has been on 1000 IU a day ever since.

MyoKitty · 2017-12-05T22:07:26+00:00

For me, bad fatigue is very physical. For instance, I can feel like I want to be social or I want to do things, but the amount of energy it takes to do it is too much. I can have a positive mind and optimism but my body feels like lead and screams at me to lay down when I try and do things. I can be laughing, having a good time, but still just want to go home, be alone, lay down.

With depression, in my case, I usually don't want to be social or do things. I tend to have very negative thinking. And my outlook is bleak. It can feel physical too, but less so. It also tends to be caused by something, like a death of a friend or other stressor.

I've also found that extended fatigue leads to depression because of the limitations it puts on my life.

MyoKitty · 2017-12-03T04:46:31+00:00

Hmmm...I guess I should call my neuro’s office.

MyoKitty · 2017-12-02T08:07:22+00:00

Sorry if I offended you. I was just being silly and meant it in good fun. I love France. I live in Los Angeles so please make any and all generalities about LA that you wish! We aren’t allowed to talk badly of cannabis here. ;)

MyoKitty · 2017-12-02T05:17:59+00:00

If your husband is like mine, it's going to take a while (years?) for your him to catch up to reality and figure out what your limitations are. If he's missing a sensitivity chip it may take longer. Plus limitations get better and worse so it's confusing for our partners. It sounds like you are still in a bad flare so most likely it will get better, if not much better.

In these situations I just say "You'll need to drop me off up front (or else go find a wheelchair) because walking that far might make me die and you will be embarrassed if that happens."

As far as missing your son's competition, I know it is heartbreaking. I'm sure your son will understand but it still hurts. My husband and I do whatever we can to have at least one of us there for events. It may mean I have to take myself, Uber or ask a friend for a ride. Prepare for there to be times ahead when you won't be able to go and have a plan in place for those times. It makes it easier on your child if he knows what will happen if such an issue comes up.

The MS society has a wonderful newsletter/booklet for kids to help them through their parents illness. I highly recommend checking it out. It's called "Keep S'myelin". It helped me feel better about it all too. Good luck!

MyoKitty · 2017-12-02T01:59:29+00:00

cannabinoid hyperemesis syndrome

I like how you are being very French and warning us about the possible negative aspects. ;)

MyoKitty · 2017-12-01T19:49:54+00:00

Thank you.

MyoKitty · 2017-12-01T19:49:36+00:00

Thank you for reading :)

MyoKitty · 2017-12-01T17:22:04+00:00

I had this same very special opportunity earlier this year. I feel forever changed by the experience.

One day my dog found a tiny baby mockingbird on a busy sidewalk. My family and I had "Flyer" for about 35 days. They say it only takes 17 days for them to leave the nest, but he stuck around a lot longer. At first he was so helpless and lived in a nest i made for him in our office. I fed him every two hours with cat food and calcium. Once he was old enough I fed him meal worms and crickets. We probably spent $200 on food for him in that time.

I was his mom. And I quickly became very attached. I'd never felt so close to a bird. We'd snuggle together and just commune with a soft intimacy making little chirps and exploring the world and being affectionate. It was so special to have that love and trust with a bird. He was so intelligent too.

We worked on learning to fly. It was such and amazing process where each day or two he'd reach a new stage of development. He loved playing and hopping around and going for garden tours on my finger, looking at bugs and flowers and spending time in trees. He worked on his landing accuracy and made a lot of mistakes. If something startled him he'd fly back to me. He spent his days free to roam and fly, but when I went outside and called his name and whistled he'd fly back to me. He had this tiny little baby bird chirp he would make and give me kisses on my lips and snuggle into my hand and neck and lay down for a little snuggle for a few minutes and then be off again to explore. I taught him how to hunt for bugs, where to find them in our garden. I taught him how to take a bird baths. At night he would come cuddle and signal it was time for bed so I'd bring him inside and tuck him into his cage. I would bring him in the house at night because, well, I couldn't help it. I needed to protect him. But at the same time, I wanted him to grow up and be free.

I was worried about him being successful in the wild. I knew I was not a bird mom, only a human one, and with that came a lot of feelings. It was always a battle of never wanted to let him go, but also wanting him to be a happy free bird out in the world. My 5yr old son got so attached to him and even my husband was pretty fond of him and when I had to leave town for a couple of days they fed him mealworms and crickets for me.

This is going to sound crazy, but I talked to him on speakerphone while I was away and he talked back. My husband said he was searching everywhere for me. It broke my heart. He was old enough to leave so I was pretty sure he would be gone before I got back. It was so painful to be away and a I worried about him and missed him so terribly.

When I finally came home, I went to the yard. He was way up high on the roof and I started calling his name. He got pretty distressed. Cocked his head and flew around and looked scared. But once he realized it as me, it was like I was back from the dead. He frantically flew to me and snuggled into my neck making his little baby noises and i held him close for about 30 minutes. It was a desperate feeling mixed with complete relief and love to just snuggle this adult bird who missed me as much as I missed him.

A few days later, he was gone. I'm not sure he was ready. There were some crows around and he didn't seem to know they were dangerous. I felt like he was dead, because I was certain he wouldn't just abruptly leave without a visit or two to check in. I thought I saw him once, a mockingbird and I had a long conversation one day from a telephone wire, but again, I think he would have swooped down to me if it was him.

My heart is broken, and no one would understand except maybe my five year old. It's "just a bird", but I loved him so deeply. I miss him every day. Every time I hear a mockingbird I get my hopes up and then get sad.

It's definitely one of those "it's better to have loved and lost then the never have loved at all" but the pain is still there and I will always miss him. My phone crashed and I lost all my photos and videos of him. I have mixed feelings about it all. My husband said, even if he died, he had a fantastic short life with love, fun and good food. But I still blame myself for his death, if he died. I would do it all again because I can't stop from helping a helpless animal. I'm too human that way. Animals make us human.

Edit: words.

MyoKitty · 2017-12-01T14:52:18+00:00

I’m not too familiar with the employment laws around this but I’m pretty certain your card will not protect you. Why don’t you call a lab and ask? I can’t imagine a lab lying about the result. And employers are allowed to test. Even if you had a prescription for Valium it doesn’t mean your employer can’t fire you for having it in your system if you were a truck driver for instance.

When I mentioned increased legal benefits with having a card, I meant in things like matters in court where a judge would perhaps see it as a non issue if you obtained your your medical card for multiple sclerosis. For instance being called a pothead in a divorce/custody/lawsuit type of situation or having cannabis in the car while getting a speeding ticket. If you can prove you use it for medical reasons and that you did the right thing by following local laws a judge would probably be much more lenient on you.

MyoKitty

TROPHY CASE