Wow - just everything they are talking about! But I am 71, had MS since my teens but only recently diagnosed. So, most of the stuff they are talking about has happened to me for many years. It was called hypochondria for 3 decades and I could put out my own shingle for the therapy that, oddly, never cured my symptoms! Yes, dairy free, yes gluten free, (still eat cheese). No artificial ingredients. Many falls. Anemia. And yes, an indoor girl! This is great! Thank you!
I am almost 60 and have had MS symptoms since at least 2004. I was misdiagnosed in 2014 and I am struggling to find a MS doctor to listen to me and my struggles.
I had incessant itching 24/7 for 6 months. My dermatologist had no clue what was causing this and eventually gave up. As fast as it started, it went away!!!
I get all the weird ones. 😆 I was at my neuro check up and couldn't hear her well enough over the drone in my ears. She crinkled her nose at me when I described it as someone pounding on huge copper drums you see in orchestras, like when they're mimicking thunder: boomboomboomboom so loud I couldn't cope anymore. So I saw a neuro audiologist who diagnosed me with Myoclonus Tinnitus. It was the tiny muscles holding those tiny bones next to the ear drum together - (anvil, hammer, ) in spasm! I described spasms on my head like two caterpillars with meat hooks for tiny feet climbing from the base of my skull over my head terminating at my eyes. I do have trigeminal neuralgia, but this was off the hook pain (pun intended lol)!
My hiccup cure: I was a singer before MS took THAT away too! So I know how to blow out my diaphragm beyond the hiccups. It works every time! Whenever I get hiccups - I call it my “MS Aura.” I KNOW it’s going a flare worse than normal is coming.
My super special MS symptom that doctors have rolled their eyes at me or told me it wasn't MS related is hives. Every time I've had a relapse, leading up to the relapse, I get horrible head to toe hives. Nothing seems to trigger them, so the doctors label it as chronic urticaria, but once the relapse happens, the hives stop.
@MStrippingonair I feel like Dr Boster would be open to considering it. I have a good neuro now (my first one was....on a different page to try and put it nicely 😜). I haven't brought up my theory with him yet, but I've also been lucky to have no had a relapse since I started seeing him either 🙌 Hallelujah for good doctors who are willing to actually treat and Ocrevus! Lol
Is tinnitus part of hearing loss? I’m undiagnosed waiting to see a neurologist but it’s one of the many symptoms I’m experiencing to also include the random itching with no rash along with the bugs crawling sensations. It’s so weird.
Hearing loss,MS hug, problems with swallowing,itching,numbness on one side of my face, numbness crawling up my head,speech problems, husky voice, double vision, dizziness and fainting, constant fatigue and pain all over....you name it 😂 It's a wild ride for sure!
I am a tea person myself but Idont care how many times I burn myself with hot water, they will pry my tea kettle out of my cold dead hands. As for coffee, we had a Keurig at work that I sometimes used but i get around coffee not being great by being former military and getting used to their coffee. Anything is better than reconstituted coffee. I also learned how to make Turkish coffee and quite frankly, thats my favourite way to drink it now. I dont get it that often anymore because it is a process.
MS itching is wild. I can scratch until I break the skin. Like all MS symptoms, it comes and goes. My nurse practitioner prescribes a special cream which helps.
@@MStrippingonair it’s a compounded cream that the MS nurse practitioner prescribes. It has gabapentin, lidocaine and I’m not sure what else. It works really well as long as I remember to apply it 🙄
Same here,when the itching starts I scratch till my skin breaks....went to the pharmacy and they sent me home with this pink,very liquidy hence messy, lotion that they also gave me as a child when I had chicken pox and measles. Very inexpensive and helps so much!
Ardra - I stopped wearing pajama bottoms to bed altogether! Stick with a long sleeved warm t-shirt for winter (not too loose or baggy - might get in your way...) (and your drawers, of course!) and a lighter short sleeved tee for summer / spring. Or a simple short sleeved cotton knit (=stretchy) night shirt. Change them up depending on the temperature in your room. This is totally non-friction, no issue sleep! I'm a side sleeper all the time; my legs hyper-extend if on my back, so I just avoid it. But I've been doing this bedtime 'wardrobe hack' for a few years and it totally works.
I have tried that but ran into trouble trying to pull my legs up. Usually I’ll grab a handful of pyjama. A handful of thigh kinda works but also kinda hurts? Of all the things we fear will happen when we receive an MS dx I never thought I’d find myself wishing my legs had handles 🤦♀️
I have PBA. Specifically when my Husband gets very mad at our kids - very serious situation, and I laugh out loud. Super unhelpful. I can also get triggered by something that is normal funny, but I laugh and can’t stop….like until I almost vomit. It’s totally out of my control and I almost swing towards crying when it’s over. Really hard for my brain to find emotional balance for a bit.
@@MStrippingonair laughter is contagious so even though its out of my control, when a normal funny becomes way too funny they think its awesome. I like to believe all that laughing floods me with good endorphins even if I feel guilty for not being able to control myself a little after. Silver linings.
Okay, breathing through your ears. Does it feel/sound like a combination of feeling like it sounds like you're under water and your breathing is ridiculously loud in your ears? You're not hearing your breathing externally, but internally? If this sounds right, I get that too and I hate it!! All I can hear is my own breathing and it is oddly uncomfortable. Not in a painful way, but...uncomfortable.
@@MStrippingonair While I'm not happy that this is a thing, I'm also happy to have found others who experience it. It's such a hard thing to explain unless you've experienced it yourself. Next time it happens, I'll have to try the laying down trick!
I have a special sheet on my bed with silk / satin panel in the middle and cotton panels in the sides. So I don’t slide of the bed in the morning 😄 but help me turn around 😊
Wow - just everything they are talking about! But I am 71, had MS since my teens but only recently diagnosed. So, most of the stuff they are talking about has happened to me for many years. It was called hypochondria for 3 decades and I could put out my own shingle for the therapy that, oddly, never cured my symptoms! Yes, dairy free, yes gluten free, (still eat cheese). No artificial ingredients. Many falls. Anemia. And yes, an indoor girl! This is great! Thank you!
I am almost 60 and have had MS symptoms since at least 2004. I was misdiagnosed in 2014 and I am struggling to find a MS doctor to listen to me and my struggles.
I had incessant itching 24/7 for 6 months. My dermatologist had no clue what was causing this and eventually gave up. As fast as it started, it went away!!!
And YES to the ear breathing ! I have it all the time and have been telling my Dr's for years, my ENT can't even explain it
So many ppl validating the ear breathing! 😮💨 I keep wondering if anyone calls it something else 🤔
I get all the weird ones. 😆
I was at my neuro check up and couldn't hear her well enough over the drone in my ears. She crinkled her nose at me when I described it as someone pounding on huge copper drums you see in orchestras, like when they're mimicking thunder: boomboomboomboom so loud I couldn't cope anymore. So I saw a neuro audiologist who diagnosed me with Myoclonus Tinnitus. It was the tiny muscles holding those tiny bones next to the ear drum together - (anvil, hammer, ) in spasm!
I described spasms on my head like two caterpillars with meat hooks for tiny feet climbing from the base of my skull over my head terminating at my eyes. I do have trigeminal neuralgia, but this was off the hook pain (pun intended lol)!
My hiccup cure: I was a singer before MS took THAT away too! So I know how to blow out my diaphragm beyond the hiccups. It works every time! Whenever I get hiccups - I call it my “MS Aura.” I KNOW it’s going a flare worse than normal is coming.
Also - the itching! When my MS has me out, there is so much itching it just adds to the fun!
My super special MS symptom that doctors have rolled their eyes at me or told me it wasn't MS related is hives. Every time I've had a relapse, leading up to the relapse, I get horrible head to toe hives. Nothing seems to trigger them, so the doctors label it as chronic urticaria, but once the relapse happens, the hives stop.
That is fascinating. I wonder what Boster or Giovannoni would say about this.
@MStrippingonair I feel like Dr Boster would be open to considering it. I have a good neuro now (my first one was....on a different page to try and put it nicely 😜). I haven't brought up my theory with him yet, but I've also been lucky to have no had a relapse since I started seeing him either 🙌 Hallelujah for good doctors who are willing to actually treat and Ocrevus! Lol
Is tinnitus part of hearing loss? I’m undiagnosed waiting to see a neurologist but it’s one of the many symptoms I’m experiencing to also include the random itching with no rash along with the bugs crawling sensations. It’s so weird.
Hearing loss,MS hug, problems with swallowing,itching,numbness on one side of my face, numbness crawling up my head,speech problems, husky voice, double vision, dizziness and fainting, constant fatigue and pain all over....you name it 😂
It's a wild ride for sure!
I am a tea person myself but Idont care how many times I burn myself with hot water, they will pry my tea kettle out of my cold dead hands. As for coffee, we had a Keurig at work that I sometimes used but i get around coffee not being great by being former military and getting used to their coffee. Anything is better than reconstituted coffee. I also learned how to make Turkish coffee and quite frankly, thats my favourite way to drink it now. I dont get it that often anymore because it is a process.
MS itching is wild. I can scratch until I break the skin. Like all MS symptoms, it comes and goes. My nurse practitioner prescribes a special cream which helps.
Oh that sounds miserable! What kind of cream helps this? Steroid?
@@MStrippingonair it’s a compounded cream that the MS nurse practitioner prescribes. It has gabapentin, lidocaine and I’m not sure what else. It works really well as long as I remember to apply it 🙄
Same here,when the itching starts I scratch till my skin breaks....went to the pharmacy and they sent me home with this pink,very liquidy hence messy, lotion that they also gave me as a child when I had chicken pox and measles.
Very inexpensive and helps so much!
Ardra - I stopped wearing pajama bottoms to bed altogether! Stick with a long sleeved warm t-shirt for winter (not too loose or baggy - might get in your way...) (and your drawers, of course!) and a lighter short sleeved tee for summer / spring. Or a simple short sleeved cotton knit (=stretchy) night shirt. Change them up depending on the temperature in your room. This is totally non-friction, no issue sleep! I'm a side sleeper all the time; my legs hyper-extend if on my back, so I just avoid it. But I've been doing this bedtime 'wardrobe hack' for a few years and it totally works.
I have tried that but ran into trouble trying to pull my legs up. Usually I’ll grab a handful of pyjama. A handful of thigh kinda works but also kinda hurts? Of all the things we fear will happen when we receive an MS dx I never thought I’d find myself wishing my legs had handles 🤦♀️
@@MStrippingonair So sorry - I know - MS is the pits. I too haven't slept through the night in a couple decades...
I have PBA. Specifically when my Husband gets very mad at our kids - very serious situation, and I laugh out loud. Super unhelpful. I can also get triggered by something that is normal funny, but I laugh and can’t stop….like until I almost vomit. It’s totally out of my control and I almost swing towards crying when it’s over. Really hard for my brain to find emotional balance for a bit.
Thanks for sharing. It sounds like one hell of symptom. It must help for the ppl in your life to really understand what’s going on.
@@MStrippingonair laughter is contagious so even though its out of my control, when a normal funny becomes way too funny they think its awesome. I like to believe all that laughing floods me with good endorphins even if I feel guilty for not being able to control myself a little after. Silver linings.
Hiccup cure...3 big fast gulps of your favorite soda, my Dr's were even shocked when I showed them
Okay, breathing through your ears. Does it feel/sound like a combination of feeling like it sounds like you're under water and your breathing is ridiculously loud in your ears? You're not hearing your breathing externally, but internally? If this sounds right, I get that too and I hate it!! All I can hear is my own breathing and it is oddly uncomfortable. Not in a painful way, but...uncomfortable.
I think that’s it! I have to lie flat to make it go away which makes me think it’s something to do with inner ear?
@@MStrippingonair While I'm not happy that this is a thing, I'm also happy to have found others who experience it. It's such a hard thing to explain unless you've experienced it yourself. Next time it happens, I'll have to try the laying down trick!
Coffee coffee coffee yes!
I have a special sheet on my bed with silk / satin panel in the middle and cotton panels in the sides. So I don’t slide of the bed in the morning 😄 but help me turn around 😊
this is genius
@@MStrippingonair ❤