Just an update, and frustration vent (pardon me for venting, but not many places I can do that!)
I've been, over the last month, slowly getting worse. Neuro said to wait till my appointment in May, and we kinda had to for a bit, because we are doing, as I said in a comment, what I'm calling the insurance tango. My husband was the first of many layoffs at his job. I really think that it was because he worked from home so much during my diagnosis stage (not worries, he was able to find a new job quickly, but insurance is... tricky, as you all know).
Well, this last, oh, a little over a week, as I wrote in my last post, my dizziness has gotten so much worse. Not as bad as my flare that led to my diagnosis last Fall/Winter, but it's also different and is making me super nauseated and unable to eat at times. We thought it might be my iron levels, but hematology says that it's my MS. Neuro says it could be my iron, and wants to wait until I get my iron infusion, either this Friday or next, to see if it helps.
So over the weekend, my calves started hurting, then Monday (or Sunday, time is difficult to keep track of 😅), my left leg started jerking/twitching slightly, my left calf started having tremors, my left side of my body in general is in pain, and my left sided headaches started getting worse. So I messaged neuro. They put me on a tiny amount of Baclofen, ordered a lab to see if I have an infection, and want to wait till after the iron infusion to do anything. Talked about possibly ordering an MRI, but not yet (well can't until the 1st because of insurance!). I get waiting till the lab comes back, but not till after the infusion. My low iron is not causing all the other stuff that is going on.
I am just frustrated at the insurance issues, having to wait till I'm getting this bad for neuro to do anything, and there is so much going on this week! I'm in the process of making a chocolate blackberry cake and even with my Teens help it is taking days to make with everything going on.
Pic is of an orange (for MS) brontosaurus (because I love them!) that I bought to go on adventures with me! I'm turning my crafting IG into a more MS awareness thing, so this little guy is going to go adventuring with me! For example, when I go to get my labs, I'll take a pic of it in the lab chair to post! 🤣🤣🤣I think it will be hilarious and fun! I had not realized that it was MS Awareness Week till I read a post on IG last night and thought of the idea for taking along an adventure buddy. I don't like posting pics of myself, that gets me weird messages... 🫢😥so taking pics of... well, I'll have to get my Teens to help me name it! But of the dino instead of me in places I go, will help me get back to posting, and give me a small way of helping with MS awareness!
I am @KarrisCorner on IG (profile pic is of a purple crocheted monster hat I made for one of my kids years ago!) if you want to follow along on our adventures! Let me know you are from here on a message and I'll follow you back!
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MSFlea
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Hi MSFlea 👋 I've just followed you on IG. My name on there is @charlottewright1709, and my profile pic is me and my husband on our "first" dance for your wedding last year. Loving your crochets ❤️
Thank you 😁 he knows that when he signed the certificate, I'm legally his problem, but he can't argue because he's legally my problem now 🤣 to be fair, he's been with me for 10 years and was there when I started declining. Fully supporting me and my change in health. He's not scared though. He met me when I was a student nurse, and all of the knowledge is still somewhere in my brain amid the mess of the lesions. I taught him how to care for someone having a generalised seizure when, one night when me, him, and his best friend were walking home from a pub. His best friend dropped and started seizing, and I scared my husband when I immediately switched from "Drunk Charlotte" to "Nurse Charlotte" to care for him and make sure he got home safe and his ICE number called to update her🤣 husband's had to use that knowledge a lot these past few years when I started having generalised seizures, usually sat on the toilet in the mornings when he's not yet properly awake 😅 he remembers me coming back to bed one morning, after using the loo, him asking questions like, "are you alright?" where I laughed to answer him. "Are you having a seizure?" Laugh and quick blinking of my eyes. "Oh shit, I need to get up now 🙄". Then there was the one in January, where I was about to go to sleep when a wave of nausea came over me. Hubby took me to the bathroom so I could throw up into the toilet. I asked for a drink, so he got me some water, and then noticed the left side of my face drooping like I was having a stroke. I next remember waking up in hospital, him still somewhat asleep in the chair next to me 😅 I do remember asking him if he told his manager that he wouldn't be in work, but he laughed and reminded me it was a Saturday so he didn't need to go to work 🤣
He sounds like an awesome guy. I love that he has been with you through it all.♥️ That is so wonderful when you find someone who truly does love you through good times and bad. When I was first diagnosed, just at the beginning of this February, I kept stumbling across stories of partners leaving because they could not handle the stress of being with someone with MS. It really scared me. But hubby and I have good communication, so we talked about it, and he reassured me he was not going anywhere♥️ He constantly reassures me, because he knows it is a fear of mine. Not because of him, but because I keep coming across more and more of those darn stories. I should know better, but (need a shrug emoji!) it is difficult not to worry a little bit, for me. We've been together 20 years, married for 18. 😀
I'm so sorry you've had to go through things like that, but I'm also so happy for you that you have a partner that is there for you through it all.
🤣🤣 I discovered last night that the MS Awareness Week is in the UK, but, I'm still going to do it! I like the theme, and I have enjoyed the posts and people I've met on IG so far this week! But I really 🤣😂 when I realized that it was just in the UK! I love the #MSunfiltered theme 🧡
He is an awesome guy 😁 he'll get all shy and bashful when I tell him what you think 🤣 and we've both got guys like that! Being our solid pillar when we're feeling unsteady 😁I don't tend to look at those stories, and if I do, I'll shrug, maybe offer advice, and give a hug through the Internet or something 🫂🫣
I think that, as a woman, I can pull myself out of whatever bad thought comes into my head. Pull up my big girl panties, so to say 😅 I think that analogy works in the UK only 🤔 I don't need him to take me out of whatever misery I'm in. I think I pull him out of it more often 🤣 we are, quite literally and like Cosmo and Wanda from the Fairy Odd Parents, two halves of a whole idiot 😜 making jokes out of bad situations. Like recently, I'd fallen in our shower trying to wash my feet. He came running into the bathroom, seen thatI managed to get up myself, and the next line he came out with, "I know you fell head over heels for me, but you don't have to go arse over tit!" That sent me into a long period of me laugh-squeaking! He loves getting me to laugh 😍
The big girl panties analogy works in the US too🤣 At least in the south, where I live it does🤔. I love your analogy of Wanda and Cosmo, that is awesome. Hubby says his goal everyday is to make me smile and laugh 😍I 🤣at your shower story! It is so good to have a good sense of humor about those things!
I don't mean to read those sad stories, but I stumble across them. Most of the time I am able to shake it off, know that it is a reflection of that persons character, and just keep going. Sometimes I'll be in a bad humor about my MS and I'll stumble across one, and my anxiety will start talking. But, for the most part now, with the talk hubby and I had and everything, I'm able to do as you said, offer my sympathies and move on.
I'm happy I made you laugh 😁 and it is good to be able to laugh! I go with the mindset of, "if you don't laugh, you'll cry." Works every time 👌😏
It's good you're able to shake it off most of the time 🫂 a good cup of tea/coffee and a moment of silence while you're calming your thoughts helps a lot, I've found ❤️
I'm so sorry to hear that you're having such horrible symptoms, and that you're stuck in insurance limbo for six more days after today. The uncertainty of having MS gives me so much anxiety, even without being newly diagnosed, having such scary symptoms, and having your doctors play hot potato with your symptoms. "It's MS! It's anemia!" It doesn't sound like anemia to me either. Medical gaslighting is so much fun because it adds insult to illness. Your neuro could have ordered you an MRI and you could have just scheduled it for after your insurance kicks in. Busy weeks can be hard on us, so I hope you'll take it easy as much as you can, but it's also good to have distractions when things are tough!
Your idea of using an adventure buddy to raise MS awareness is brilliant. I hope you don't have to put too many miles on him in the coming weeks, though, as I hope your neuro is able to help you soon! Hang in there. ❤️
Thank you! 🧡 I've decided to find an MS specialist neuro after this. I wanted to stay with my current till the meds got approved, but... There is one an hour and horrible traffic 🤣 from where I live that has amazing reviews and recommendations, so I'm hoping to get in with him, after I get through what is going on now.
I think that's awesome! The travel is a drag, but I also went through a scary time and decided to ditch my neurologist. In uncertain situations, you need a plan to give you confidence, as opposed to leaving you scared and feeling abandoned.
Tango is a nice word to describe it. Have you tried magnesium or an Epsom soak for your legs?
What's your Dino's name? He's very cute! I have an adventure buddy also, Braveheart 🥰 He was a gift from a sweet friend after my diagnosis. We have matching MS bracelets with a phrase she thought up to remind me of my strength. She made him a cooling towel to match the one I use to wear.
kdali That is so sweet of your friend!🧡 And I LOVE Braveheart!! Have not thought of a name for my dino yet, it gets here in the mail today, so I'm hoping actually seeing it in person will give me some inspiration on naming it. My favorite CareBears growing up were Funshine, Braveheart, and Bedtime bear. 🙂🧡
I have problems with vertigo as well. It can get really bad if I've got an ear infection starting. So you might want to get your ears checked for an infection or an imbalance in hearing. For example your hearing in one ear is perfect while the other is less than perfect. That might contribute to the vertigo. Other times, I'm just really tired, and I'm always tired, and that can contribute to the vertigo as well. Rest is the only remedy for that for me.
Good luck fighting with the insurance company. Sorry you're having to fight that as well.
Peruzzot Thank you 🧡I don't have any ear pain or anything, so I don't think it is that, but it is worth a shot to have the doc take a look. Sorry you are dealing with dizziness too. It really sucks. 🧡
I get 2 types of dizziness, one from MS and also from BPPV which is caused by crystals in the inner ear getting out of place. I learned how to do the epley maneuver myself after having it done a few times by healthcare providers (a physical therapist and a chiropractor). I take 300-400mg of Gabapentin at bedtime to manage the MS vertigo and do the epley maneuver whenever I have increased vertigo to see if the crystals need resetting. If I don't spin during the epley maneuver I know it's the MS. I have 100mg capsules of Gabapentin so will take 100mg during the day if it acts up. I don't want to take a bigger dose as it makes you a little sleepy in bigger doses. I try to take the lowest dose at night so it doesn't make my daytime fatigue worse.
The epley maneuver was a game changer for my quality of life!
I hope your MRI comes out OK and it is just something causing an MS flare!
Thank you! 🧡I will have to go to my GP (once I find a new one... new insurance, and my awesome GP's office doesn't accept it! 😭)when I am able to after the iron infusion (it is Friday, so tomorrow), which made me feel awful for like a week the first one I had, so I am planning on that being my worst case scenario, and hoping I react better this time. Did you have to see a specialist to see that you had BPPV, or was your GP able to diagnose it? I do take Gabapentin, though I don't take it on days that there is a possibility I might have to drive (I don't drive much at all due to the dizziness) and it doesn't seem to help with the dizziness for me. The scopolomine patch worked wonderfully, but I had the side effect of really bad dry mouth, and that is awful, so I had to stop using it.
That is who diagnosed and treated me ☺️ I haven't seen my GP in years, my GYN basically acts as my GP, orders labs, colonoscopy, mammogram, etc. Other than MS and skin cancers I don't have any other medical problems requiring treatment.
So sorry! I have intermittent dizziness and nausea. Not sure if it’s all the meds or MS or combo of the two. It can be very frustrating. Following you on IG. Anyone finding it harder to type, both on smartphone and standard keyboard? My days of 85 wpm are long gone!
Following you on IG. It’s wonderful to increase MS awareness…. Both my GP and Orthopedic Specialist appreciate my lesson… Neuro not so much! Whenever I question anything that’s ’off label’ and she denies, I ask her if she would take a drug (Clemastine) if she had MS…. She smiles and agrees she would.
Thank you for the follow!! 🧡 I followed back the people who followed me, hopefully one of them was you! (I don't think I missed anyone, but who knows!)
I think it is awesome that you are trying to increase awareness too! And with your GP and Orthopedic Specialist! The more we get the word out there the better. I know how little is known about it. When I was, oh, 22? My boss was diagnosed with MS. I covered for him a lot, especially in the first few months. But I remember I didn't even know what MS stood for when he told me that was what the doc said he had. And I knew absolutely nothing about it, other than what he told me, until my neuro told me I might have it and I started researching.
And yes! I have been making so many typos, especially on my phone. I downloaded the Google keyboard, because it is a little bigger on the phone than the one the phone comes with (I have an android), but I'm still making lots of typos, and having a hard time with it. I just let the people I message most know I'm having problems with it this morning, and so far everyone is being very understanding. It is very frustrating though!
Oh my goodness.. I am so sorry. The journey is so difficult right now… I pray that the iron infusion will help resolve at least some of the problems. Maybe when you actually see the neurologist, he will increase the dose of baclofen to help settle down some of the other things. Sending you big hugs and prayers. I’m so sorry your husband got laid off… Just adds to the stress and anxiety that you already are having.Vent all you need to my friend we are here!🤗🙏🏼
🧡🧡 Thank you so much! I see the neurologist on the 7th. I do hope that she will increase the Baclofen, it's helping a little bit, the tremors in my leg has lessened, but it doesn't really help with the pain so far. But, at this point, any amount of help is good!!
Hi! I am Sherri. I was dx'd on July 14, 1998. My dx changed to SP/MS in May 2022. I am so sorry that you are dealing with the insurance issues on top of the health issues. I love the idea of your MS adventure buddy! I need to ask: what is IG? Too early. My brain hasn't kicked in yet.
Hi! Nice to meet you Sherri! 🧡IG is InstaGram, I was mildly active on it with my crafting stuff before I had my flare and such that lead to my diagnosis, but not hugely. I had started discovering the crocheting community on it, which is awesome. And I followed a few people with MS recently. Then this week with MS Awareness Week (in the UK) I searched for the #MSunfiltered, which is the theme for it this year, and found a pretty big community of people with MS sharing their experiences. If you have an account or get one, let me know and I'll follow you! (if you would like) 🧡
If you ever have to have a test that your insurance gives you problems about, look up MDSAVE. When my husband was having heart issues and our EX GP wouldn't push the insurance company, we found out about this. Some places have agreements with them and you get a Big price break. You pay MDSAVE who pays the bill. Not all places take it. We drove a town away so he could have the tests and saved a bucket of money.
Hang in there my friend, I can relate to you! How about my Neuro who is always heavily booked prescribed a new medication for me that I can not take because it would interfere with a diuretic medicine for my heart! I do my own thorough research, be I take anything!! If you really start to feel like you can’t wait, go to your Emergency Room! Maybe the same one affiliated with your Neurologist; they are obligated by law to treat you with or without insurance!!! In most states hospitals have what called “discretionary funds” which are allocated for patients with insurance debacles! Some blessings aren’t always told or shared publicly. but before MS I spent 39(ish) yrs in Social Services and loved making sure information that could help someone was shared. The best and feel better soon ❤️💐. NeeC
stepsforNeeC That is awful that your neuro did that! Did your pharmacist catch it? I'm so glad that you do do research and caught it! Thank you for the info! 🧡That is good to know!
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