I've been struggling with a mystery condition for a while now. After any exertion my muscles suddenly become very weak. I start losing my balance; my feet will scuff the ground when I walk, causing me to trip, then fall. Sometimes, I can sense it happening; other times, I have no warning at all. My arms have no strength, and my hands shake at times with tremors. I cannot carry anything of much heft, and there are times I can't steadily put a drink to my lips. As you can no doubt guess, this has put an end to my daily walks; I haven't been able to take one for a month.
I miss them more than you could ever imagine. And I am so very tired so much of the time.
This is eerily reminiscent of my Vitamin D deficiency in 2017, except that I've been supplementing D religiously since then. Obviously, these symptoms prompted a visit to my primary care physician, who ordered some labs and a visit with my neurologist. Her initial diagnosis is that my very high dose of Topamax for migraine prevention, that I've been on for twenty years, might now be just too high for my tolerance at my age. "I worry that we might be doing this to you, not a disease process," she said. My dosage of Topamax is extremely high--higher than what is usually recommended--in order to control my migraines. My neurologist--actually his NP--ordered more labs and stepped down my Topamax as a possible solution. Another possible diagnosis is myasthenia gravis; unfortunately, there is no definitive test for it, only markers to look for or rule it out in a big process of elimination. But my initial round of labs looked pretty good, at least from what I saw and could figure out on my own.
And, as is always the case it seems, I don't go back for a follow-up with my actual neurologist until mid-September after new labs are done next week. Sigh.
As so many of you know, Patience is Not My Gift. I'm angry and annoyed that I'm so limited. And that now there is so much more burden placed on Rick. Just running the vacuum can put me out of commission for an hour or more. He escorts me on short little walks in case I tire and begin to show signs of scuffing. Spending part of a day with Theo--holding him, playing on the floor, being active with him, a Very Busy toddler--makes me incredibly tired and sore, but that will always, always be worth it.
In other news, August marks yet another year for Dept. of Nance. I've been writing here for twenty years now! It's astonishing, but even more astonishing is the number of you who have been here for so many of those anniversaries. Thank you, and a special Thank You to my Faithful Commenters, who engage in and encourage such a lively, witty, and intelligent discussion here. You're the best on the Internet, no doubt about it.
I'll write a more celebratory post soon, but I wanted to share this news with you, my friends and virtual support group. Thank you for being here, and thank you for writing over at your places. It's a joy to start my day with you every single morning.
Oh gosh, the unsteadiness and exhaustion sounds just awful. I hope decreasing your migraine meds makes a difference and doesn’t result in migraines on top of what you are already dealing with. I hope they get to the bottom of what is going on very very soon!
ReplyDeleteI’m glad to close the book on August. It was the best of times, it was the worst of times. We had a great vacation at my parents and the boys had a great extra week at the lake. But now I am ready to get the boys back on a normal schedule. And Paul is excited to start 2nd grade. He has so many buddies in his class and will have a much smaller class size - 19 which is great compared to the 29 he had last year!! His poor 1st grade teacher had her hands beyond full.
Keep us posted as you hear more about what is going on with your health! Good riddance to August!!
Lisa--Thank you for your support. So far, the decrease in meds has not caused a resurgence in the frequency or severity of migraines. That's a big positive for me.
DeleteYou've had some tough times in August as well, I know, and you'll be glad to move into September and some routines. I'm so glad Paul will be in a smaller class; 29 in any class is too many, and in a primary grade, it's ridiculous. It certainly doesn't seem to have held him back any, however; from what I can tell, he thrived in spite of it.
I tool Topamax for three days and I wanted to die, I felt sooooo bad. I get Botox shots for my migraines and it has saved my life. My best friend has MG, she had some of the same symptoms and was really bad for a while needing all sorts of meds and steroids, but she has been weaned from all of that and just really has to watch that she does not expend too much energy or she will be in bed a few days. Believe me she was devastated with the diagnosis but is really doing very well now. I wish you the very best. I hope it is a simple medication adjustment. THink about those Botos shots, they saved my life.
ReplyDeleteMeredith--How nice to see you here! I hope you and LB have been well and have had a good summer.
DeleteTopamax took a bit to get used to, and it's been a miracle med for me. My insurance won't pay for Botox, so I've got to go with what's available. I'm so glad you could get Botox and that it was a saving grace for you. Migraine is a bitch.
Thanks for the info about your friend. It's encouraging in case that ends up being my diagnosis. And I greatly appreciate your best wishes.
That sounds awful, and the waiting truly sucks. I hope the news is good when it comes.
ReplyDeleteTwenty years! As of August, I've been blogging for 19, so you have me beat. I'm glad for your blog.
ccr--Thank you. The waiting is, as Tom Petty sang, the hardest part.
DeleteWhat a nice thing to say, that you're glad for my blog! It's enough to make me go at least another year. Congratulations on Year 19 for you! How on earth do we do it?
Those physical/medical conditions sound difficult to deal with. I hope you find a good outcome.
ReplyDeleteCongrats on 20 years of blogging!
My August was not all bad - it's my birthday month and I had some really good peaches, and some good family visits.
CHM--Happy Birthday! Good peaches are a true delight. I got some as well, and they are such a pleasure. And visits with family--when they're good, they're really good.
DeleteThank you for your good wishes on both my blog anniversary and my eventual diagnosis. I appreciate them very much.
Oh my, that is not good Nance! I hope that you get it figured out soon. I know this must be hard, as I am sure your daily walks are what help you work through some of these kinds of issues, so not having that is difficult! Mid September can't come fast enough!
ReplyDeleteHappy 20 years! That is a long time! I know that for me, there have been ups and downs over that time, and it is interesting to look back at some of that (and nice to have the record too!) Here's to twenty more! :)
Kyria--
DeleteNo, it's not good at all! My daily walks--alone!--gave me a chance to not only get exercise, but to also enjoy nature, the neighbourhood and its dogs, and to have time to think things over. They were like therapy, both physical and psychological. I feel cheated.
Twenty years really is a long time to be recording a life and one's thoughts online. As you said, it's interesting (and fascinating!) to be able to look back and read what I was thinking about and caring about in those past years. Will I still be writing for twenty more? Wow, that's a lot of years to come...I guess we'll have to see! But thanks for your encouragement.
I'm sorry to hear your medical news and hope you get answers and solutions soon. It's hard to wait when you don't feel well. Hopefully, they are on the right track with adjusting your meds.
ReplyDeleteCongrats on 20 years blogging!
Ellen--How true! Feeling crummy does not lend itself to patience, that's for sure.
DeleteThank you for your kind words and your congratulations, too. I appreciate your support here.
Oh wow, that sounds just dreadful, Nance. I am so sorry to hear it. How frustrating that must be for you, to be so knocked out all the time. I hope you get some answers and a way forward and soon!!!
ReplyDeleteHappy 20th blog-anniversary!
Nicole--Thank you for your kind support, Nicole. The constant weakness and fatigue really is frustrating; it makes me feel so much older than I want to feel. This is not my life!
DeleteAnd thank you for celebrating my 20th with me. I'm glad you're here.
Nance, I sure hope you can get this mystery illness figured out. That sounds really rough. I understand the anger of not being able to go for walks. I'm much better now, but I hurt my knee a couple of years ago and had to quit for a time, and it made me so angry - like one of my favorite things in life was taken away. Congratulations on 20 years of blogging! That's wonderful!
ReplyDeleteMG--Yes, that's exactly how I feel--like a favourite part of my life has been taken away from me. And it feels like such a small thing, like I'm not asking for much, you know? Yet I know so many people suffer chronic illness and pain or other disabling conditions, and I feel guilty and small for complaining.
DeleteThank you for your kind words and for celebrating my 20 years of writing here. (I still can't believe it myself.) I'm glad you found your way here.
Nance, I celebrate you every day and I'm celebrating your 20th blog anniversary with extra gusto. I wish I had been here from the beginning--my life would have been richer! We'd have shared a state for a while even :).
ReplyDeleteI am crushed to hear of your unresolved health condition. I am willing remedies and answers your way with every fiber of my being. My A, StephLove's youngest, and now you--these mystery maladies are the worst. I hope yours gets figured out fast in a way that leaves your migraine management in place, and that you're out on your walks and spreading kindness and compassion out there stat. XOXO
maya--Oh, I wish we'd found one another much sooner, too. Still, I'm glad we did at last. I know I feel very fortunate we're friends.
DeleteMystery Malady--that's what I'm going to call this until I get a diagnosis (if I do). I like the term, even the way it looks on the page. Thank you for your efforts toward a solution; let's hope the Universe responds, and responds to A and StephLove's youngest as well.
And thank you for your ongoing celebration of me and my 20 years of writing here. You know I feel the same about you and your ongoing Kindness Initiatives always. XXOO
Oh goodness, this is not good news. I assume that they took vitamin D tests and that your levels are OK…and it’s not that your body isn’t absorbing it somehow. I had a friend who had that problem once (though hers was potassium) and she was in a wheelchair for a bit, but is much better now. I hope that if it’s the medication, that can be solved without putting you at the mercy of those god damned migraines!
ReplyDeleteCongratulations on 20 years with your blog! I’m right behind you, my anniversary is in November. Some years I posted pretty much every day, some years I missed entire months, and you have been there for much of it! <3 Sending lots of love your way.
J--My vitamin D levels are fine; they always check that as a matter of course. My B12 is extremely high, but I had been supplementing on orders from my neurologist. I have suspended that vitamin on my own after seeing that result. I hope it's the meds, too, and that a lower level or a different one, perhaps, can be part of the solution without triggering chronic migraine again.
DeleteI know we've been together online for a long, long time, and you're one of the few bloggers I've had the great pleasure of meeting in person. I'm so grateful for our longtime friendship, and so happy that we found one another. Thank you for kind words here and for everything. XO
Dearest, dearest Nance… So very sorry to hear about your horrible month and all of those debilitating symptoms! The fatigue is bad enough, but losing your balance, the feet scuffing, and falling down is awful. 😞 The fact that it is keeping you from your daily walks is really the last straw. I worry that Luis and I will not be able to take our daily walks in the park (or the mall when it’s 98 degrees outside) due to some sort of incapacity. Sending positive vibes your way for a definitive diagnosis and treatment.
ReplyDeleteSpeaking of which… August has been kind of a shit month for me as well, although not nearly to the same degree. Finally had my MRI which the spine doctor said confirmed suspicion of osteopenia (the first step in full-blown osteoporosis) and scoliosis. It mostly affects my hips and my left leg where I also have osteoarthritis in my knee. Waiting to set up physical therapy sessions. Meanwhile, the MRI also turned up the fact that I have a cyst in each kidney, one of which is rather large. Waiting to see the nephrologist next week. The spine doc said it’s not uncommon and many people have these cysts which are often benign, but… it still scares the crap out of me.
Congratulations on two decades of prolific blogging! I have been following you for 19 of those 20 years, and cherish our friendship, albeit from a distance. Take care, and let us know when you can about the definitive diagnosis for your symptoms. Hoping the migraines don’t come back with a vengeance. September owes us some good news!
XXOO
Ortizzle--Dearest friend. How sorry I am to hear of your own August challenges! This is not what we signed up for when we retired and resolved to age with grace. What a lot of bullshit. I hope that PT provides you with some benefits. When you have a good therapist, PT can be such a boon. And of course you're frightened about the cysts--they shouldn't be there! Let me know what you find out.
DeleteThank you for your kind commiseration and concern. You know how I feel. Losing my daily walks, even temporarily (as I hope), takes so much away. Incapacitated--the word itself makes me feel hopeless.
And thank you also for being here for almost the entire existence of Dept. of Nance! I, too, cherish our friendship, and I hope we can meet someday soon. XOXO
Nance, I loathe reading this news. I'm so sorry and I hope that you get some definitive answers sooner than later, that way you can made adjustments, medications, etc...so you can get back to being your active self. Until then, please be careful with yourself, no sense adding insult to injury with a fall.
ReplyDeleteI'm sending lots of positive mojo, good vibes and healing prayers your way.
Congratulations on twenty years---that is quite the milestone and I feel like we should all chip in and get you a cake. Or a piece of jewelry? Wait, what is the general twenty year anniversary gift....(google, google)
Oh, China! Or Platinum!
How about a cake plate made out of platinum trimmed china?
Surely, that is something you could use. Or not. 🤣
Please keep us updated. You will be on my mind until your next post. XOXO
BB Suz--Just the cake is fine, thank you! Chocolate, cassata, anything really would be wonderful. Could you even imagine a china cake plate with platinum accents? Someone somewhere right now is sending one to a bride for a shower gift, I just know it.
DeleteThank you for your kind concern and good energy. I am being very careful, and Rick is making sure I don't overdo or try anything potentially dangerous by myself. He drives me, walks with me, and takes me to the grocery store. I can't get rid of that guy!
XOXO
Sorry to hear this and I hope it gets sorted out soon.
ReplyDeleteDB--Thank you. So do I.
DeleteOof - I'm so sorry you're going through this! I'll add my hopes that the decrease in Topamax doesn't increase your migraines AND that it helps your other symptoms! I know the annoyance of the wait & see game very well. I'll be over here tapping my foot impatiently with you.
ReplyDeleteAnd congratulations on the milestone! I'm really (really really) glad I stumbled onto your corner of the internet!
Bug--I wondered what that noise was! You keep a pretty good beat.
DeleteThank you for the kind words of concern and of celebration of my milestone. I'm glad you happened by, too. I feel like we've been together quite some time, now. Remember when you lived in Ohio!?