Finally I have a minute to write on this discussion. It was over a week ago that my labs came back negative for Myasthenia Gravis. Unfortunately, there’s a note after the result: MG ADULT INTERPRETATION
(NOTE)
A negative result does not exclude the diagnosis of
autoimmune myasthenia gravis.
So, IDK any more than before the dumb blood test! And, on top of that, the eye specialist said to let her know if I continue to have the droopy eye and double vision when I’m tired…W T - ? Of course I continue to have these symptoms, they haven’t gone away just because she examined me and did the blood test that came back negative!!!
See, this is exactly why I HATE doctors!
I also messaged my rheumy about the above quote.
My message to him was:
I’m on Crestor (statin for high cholesterol) and I’m concerned it’s maybe the reason for my weak ankles and my legs getting weak when I walk more than a couple hundred feet.
I read that statins aren’t good for people with autoimmune disease, such as psoriatic arthritis, and there are other cholesterol-lowering meds that aren’t statins.
I’ve reduced the Crestor and only take 1/2 pill a day, which is a very small dose and it still keeps my cholesterol down, but my ankles/legs still hurt enough to be bothersome!!!
What are your thoughts on this? I’d like to know so I can talk with my cardiologist about this and maybe get on a different med that isn’t a statin.(I didn’t mention my eye problems to my rheumy.)
Here’s what he messaged back:
Per Dr. John Deere: I have lots of patient that take a statin with no trouble. The only way in general to see if a medications is causing the symptoms is to stop the medication for a period of time and then restart the medication. Would recommend doing this under the direction the prescribing provider.
Jane Doe, LPN with Dr. John Deere
(I changed the names to protect the innocent. The nurse has bad grammar as you can see.)
So, I messaged my cardiologist and he had a nice response, although I think he’s being sarcastic:
HI J*****, IT IS OK TO REDUCE YOUR CRESTOR FURTHER. I AM HOPING IT WON’T AFFECT YOUR CHOLESTEROL. HAVE A GOOD DAY. (Nurse)
I’m now taking 1/3 of the Crestor Pill each day. I’m hoping it still keeps my cholesterol down because it has made a difference in how my ankles feel…at least they’ve felt better for a couple days now. My eyes are still the same.
The past few days my left eye has been worse than ever. Now it’s not the drooping that’s bothering me as much as the blurred vision. This is so frustrating and I know it’s a matter of messaging the ophthalmologist and telling her things haven’t changed and it actually seems to be getting worse.
If the blood test had come out positive she would have wanted to immediately start treating me with whatever meds they use for MG. Instead she said to let her know if the symptoms continue. I’m thinking she hoped, like me, the symptoms would miraculously disappear. I haven’t researched it much at all because I’ve been trying to ignore it and hope it goes away. But, it’s not going away. My legs getting so weak when I walk a short distance is probably a symptom of MG, too, but then maybe not. I really hate to go on more meds! Every med I take is in smaller doses than people normally take because my body is so hyper-sensitive, so no doubt it would be the same for MG meds.
I’m just so sick and tired of having more and more things wrong with me…back in the day, I always said if psoriasis is my only health problem, I really can’t complain…then came the psoriatic arthritis, then my ears ringing constantly, then my heart problems and now this. I don’t even want to think what might be next! It’s hard to stay optimistic about the future when so many new health problems keep popping up.
Sorry, I’m sure I’ve said these words before, it’s one of those days…I should mention my stiff neck is improving, so that’s something to smile about!
really big hug I’m so sorry it’s getting worse! I hate having to call to tell them things are getting worse… I’ve been putting it off for too long myself… and that’s just for dizziness…
I’m with Grandma J, Cynthia. Dizziness can be a real problem, so don’t feel you are bothering your doc by raising it. Have you ruled out BPPV (horrible acronym, never remember it fully - Benign Positional Vertigo). Can most often be cured by a single Physio visit.
It started right after the first stelara shot and is the most common side effect… So it’s probably that… and when it’s probably that doctor’s stop looking… I keep forgetting to call until they already went home (30 minutes ago I could have called…) I will write it down to call tomorrow though… thank you both for caring!
Great to Hear Cynthia. A lot of doctors are not even aware BPPV can be cured in one session by a Physio, so if your doc thinks it could be that, you can ask for a referral to a Physio if they don’t automatically give you one (or see one privately yourself). You can usually tell - the dizziness will come on if you move your head and is particularly bad when you lie down. If these don’t trigger it, then it’s probably not BPPV. Good luck!
I’m wondering if others are like me and tend to brush things aside when it comes to their health issues…if my problems aren’t severe or continuous I have the tendency to just do a “wait and see and hope”–it’s really hard for me to see a doctor for something that isn’t so extreme it’s obvious. When I do see the doctor, I downplay the problem so no wonder I don’t get results.
So now I’m supposed to see a specialist for double vision, but IDK if I’m dawdling because I’m lazy or if it’s because I’m scared of a definite diagnosis or if I’m worried there won’t be a definite diagnosis and the appointment will be a big waste of my time (and money) and keep me in suspense about what the hell is going on!
Yesterday I went to a zoo and spent 3 hours walking and standing and my feet hurt so darn bad and my ankles and legs were so weak I walked about as fast as a snail. I wore Skechers d’lites shoes with dr scholls inserts…I think they (those shoes) were part of the problem. I think my feet swelled with all the being on them that they were pinched in those shoes. Today I wore flip flops all day and my feet feel better (not great-just better!).
I just wish it were easier to figure things out and get answers w/o having to go through so many ups and downs with pain and different weird symptoms. I spend so much time wondering if I’m doing the right thing–if I’m not pressing hard enough for answers or if I’m worrying over nothing and the weakness in my ankles/legs and my blurred/double vision and droopy eyelid are just more symptoms of my PsA. And, if they are symptoms of PsA, is it time to change biologics?
Hi there @Grandma_J I think you will find that many of us tend to brush things aside, probably as more often than not many things will resolve themselves if given time… well your standard cold or upset tummy type thing usually does… and we don’t want to be seen as panicking over nothing either… the problem with this can be that when it is something serious we tend to leave it too long to get seen to, and by the time we do some things can become majorly serious.
The down playing symptoms when talking to a doc must be a common thing too… but in all honesty a good doctor should be able to pick up enough of the type of person you are and ask the right questions so you have no choice but to give him the “full picture”, I guess it’s a sign of our busy times that this skill often gets dropped by doctors these days
Do go see that specialist about the double vision thing… this is one of those things that there could be a number of reasons for… some serious, some perhaps not so… it’s best to know either way, then if it is something more serious perhaps the earlier the treatment is started the better the chance of getting it under control (as with the PsA), if it’s not serious at least you will be able to put aside that underlying worry about it.
Perhaps the shoes were part of the problem, perhaps not… you’ve been having trouble with weakness in your legs before you went to the zoo. Looking back now there are many things I’ve had going on that I’ve made excuses for like: I overdid things today, I walked to far, I bent funny etc etc etc when all of those things might have been the PsA all along. Who knows if I hadn’t been making excuses I might have got it diagnosed and therefore treated earlier.
Start with getting to the bottom of the double vision, droopy eyelid thing and go from there.
It is very difficult to judge where to draw the line between pushing for answers and sounding anxious and overwrought unnecessarily, unfortunately we sometimes do need to push a little (or a lot) these days
Keeping fingers crossed for you!!! and hoping if a change of biologics is necessary it will prove to be worth the change!!
Thanks, janson, I will go see the double vision specialist as soon as I find out if my insurance paid at least some of the other $378 eye specialist bill!
With me, like pretty much everyone else with this inflammatory disease, one day there is sooooo much pain and the next day it’s not all that bad!!!
Today was not so bad!
Eeeekkk on the the $378 bill… this is such an expensive business Here’s hoping insurance will cover it!!!
Am soo pleased to hear that today wasn’t such a bad one for you!!! It would be nice think that might keep up for you!!!
Back to this discussion…well folks–it’s good news! I had a follow up with my internist yesterday. Now that I’ve been off the statin (Crestor) for about 6 weeks I feel so much better. The inflammation in my feet is at least 70% improved, my neck and shoulder blade stopped hurting and my eye is somewhat better. She decided I absolutely can’t tolerate statins and she prescribed fenofibrate to try and lower my cholesterol. Hopefully it’ll work because trying to lower it with diet alone wasn’t working. Tntlamb, you were right again!
I can’t believe how terrible one small pill can make a person feel if you get the SEs! My cardiologist might not agree with this, but it seems pointless to take a med that causes more pain and not to mention, depression!
I hope you all are having a good day and looking forward to a great Thanksgiving meal!
Thanks Sybil and Janson! And oh, yeah, I’m having Thanksgiving here but not until Friday–we all get Thursday and Friday off so my kids go to their inlaws on Thursday (which puts a feather in my cap and gives me the advantage for Christmas, LOL)!
What great news! Glad you got that all sorted out before the holidays. Now just remember NOT to lug those Xmas boxes up the stairs this year,lol! Hope you have a wonderful Thanksgiving and so awesome you get dibs for Christmas with all those grandkiddos. Wishing you the best and was thinking about you.
Hi Rachael! It’s so nice to know you’re still around! Thanks for your kind remarks! I think-I know-I overdid it yesterday. Our house is a disaster and I did some major cleaning and today will be the same plus baking and preparing some other food for tomorrow. The kids will appreciate it, though. Saturday and Sunday will be resting days for sure!
I hope you’re doing well! I miss you!
I think you will find that many of us tend to brush things aside, probably as more often than not many things will resolve themselves if given time… well your standard cold or upset tummy type thing usually does… and we don’t want to be seen as panicking over nothing either… the problem with this can be that when it is something serious we tend to leave it too long to get seen to, and by the time we do some things can become majorly serious.
