Yup—unseasonably balmy Indiana
Jane
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I guess unseasonably–I know Indiana, and I would imagine the normal temp this time of year is probably more like 40s to 50s at best?
Great for you, Jane! This must really help your spirits and get you feeling good–I think I’d be on top of the world if our snow melted and it was 75 degrees. I’d be happy with 45!!!
I’m not going to get too excited about the MAO Clinic. Today I found out the appointment on March 7 is a 90-minute Neurology consult. $810.00. They also told me to expect to spend a week there for extensive tests. That would be a very expensive week, and my husband already said no way.
I don’t know the details of the housing they provide–have no idea how much that would cost. Plus, I called my insurance and my clinic didn’t even bother to get a referral from them. Even if they approve this, I have no clue how much of it they’ll agree to pay, and usually they do agree to pay something but it’s always tentative, with the wording being sketchy as to how much coverage they’ll provide.
Others besides my husband are telling me to go ahead with it even if I don’t know how much it’ll cost…so, we’ll see. I’d have to change the appointment to after March 19 because we’re going to FL on the 12th and that wouldn’t give me a full week to be at MAO Clinic. We’ll see how this unfolds…
Hmmm, well Grandma J, I’m sorry to hear that - it does seem to throw a spanner in the works! I don’t envy that difficult situation.
I know for me, when something medical is going to cost a lot, I often go through the “what if’s” if I don’t do it - and usually end up with the conclusion that it’s going to cost a lot more if I don’t, for two main reasons; if it’s treatable, earlier is always more effective and cheaper, if it’s not, just the amount of distraction I would have from worrying would drop my productive hours and income, not to mention quality of life.
I would say one final thing - and a word of warning, I’m not known for my tact. From what I’ve heard of your husband over the years, I really wouldn’t put too much stock in his advice or opinion about this stuff. He’s hardly an expert, and it seems like maybe the empathy switch isn’t working too well when it comes to you and this stuff. So unless you think there are going to be big consequences through doing something he seems to think is a bit uneccesary, I’d make this decision for you.
Jen, thank you—you are so right. I am very concerned and it is true it could cost a lot more, not just in money but in my future health if I don’t treat it if it is what my rheumy thinks.
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I didn’t get around to mentioning this, but I did agree to go to the Mayo Clinic and my appointments are Wednesday and Thursday this week…I’m having several different tests, involving nerve conduction, heart, lungs, swallowing—esophagus, etc, muscle strength.
I don’t have to say I’m not looking forward to this at all, but my doctor and my daughters talked me into it.
I’m hoping the tests show I’m negative for a metabolic myopathy—especially negative for myasthenia gravis!!!
There’s a consult at the end of the day Thursday, and I hope at that point they tell me all’s good and I don’t need anymore tests.
But, we shall see—I need a lucky rabbit’s foot or something! 
You better believe it! My clinic gave me a copy of most of my chart for the past 10 years to take along to Mayo Clinic. I couldn’t believe my eyes when I read how my CPK level was being watched after my bad reaction to Lipitor. There was even a remark that I should not be prescribed statins after that! But, 7 or 8 years later, the cardiologist who did my stent apparently wasn’t informed of that and he prescribed Crestor!
I hope the stuff I’m dealing with now is something that’ll turn itself around over time. Lately I’m so out of breath and just feeling like I’m going to collapse half the time!
I did start taking a very small dose of Sertraline (Zoloft) for anxiety yesterday—I’m wondering if that’s why I’m feeling so worn out all of a sudden!
Too tired to even look forward to the adventure of the next few days!
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Just want to wish you luck this week Grandma_J.
Next week I’m going to have to argue against starting statins, I at least want a period of grace to see if giving up cheese, cream and butter helps at all with high cholesterol. I am very wary of piling on the meds. I really empathise with your situation, it just gets so damn complicated and you want to do the right thing … but what is that right thing? I hope you come out of this with some clarity about the way forward.
Can I ask you, do you get especially out of breath on exertion? Or is it more noticeable when you lie down or exert yourself just a little e.g. climbing stairs? Years ago a P.E. teacher commented to me that she got breathless going up stairs, less so when running around the netball pitch. No netball for me, but basically I find the same thing these days so wondered how it is for you.
I hope you have some opportunities to chill out and enjoy the change of scene while you’re away, if so, grab 'em!
Just wanted to wish you the best Grandma J. I hope it turns out for the best 
Good luck!
Thank you Sybil, Jen and Cynthia.
Good question. I don’t get tired from the short spurts. I do get exhausted climbing stairs or walking more than a block or so. But if I stop and rest for a minute, I can go another block, or another flight of stairs.
And my vision gets so bad. Right now, looking at my phone, the words are double. That comes and goes—really bad later in the day. My left eye mostly. Ugh. I need to know—all I want to know is that I’m ok!
Sybil, watch out for the statins! My doctor, though, wants me to double my cholesterol med and I do not want to! (It’s not a statin, but still—MORE pills!)
Can you find foods with added plant sterols? I have orange juice (Minute Maid Heartwise) and butter spread (Benecol) with added sterols. They actually lowered my cholesterol 20 points (which of course wasn’t enough, but I still use them to supplement).
Good luck, Sybil! How’s that cold infection? Are you getting over it?
The eye doctor I went to said the double vision in 1 eye (you still see double if you close one eye) was probably from dry eyes…
I’m good now thanks! What a novelty it is to just take some tablets for 5 days and it’s all over & done with!
I had the same thought as Cynthia - my vision has been very blurry at times due, I think, to dry eyes. Worth double-checking though I think I remember that you’ve considered that already … ?
I do also have dry eyes, but lubricating them with the drops the eye doctor told me to use doesn’t stop the double vision or the weak eyelid. It does stop the burning, though, which is good!
I had always thought that a very bad eyeglass prescription for bifocals was the cause of my bad eye. I wore those things for 3 or 4 years and couldn’t see right out of the left bifocal, so I squinted when I was doing any close work. I thought the strain on my eye was what caused the weird problems I’m having now, but my eye doctor didn’t seem to agree with that.
Yeah they don’t help with mine directly either… but maybe it’s something that can be prevented with eye drops but not quickly fixed when it already happened?.. but it also doesn’t always happen when my eyes are dry… so maybe it’s something completely different…
The only thing that has helped my eyes is Humira… Believe it or not there are Uveitis specialists. problem is now The eyes and gut are great but the humira isn’t doing as much for the joints…
And to add my two cents in the eyes, I have never had a uveitis diagnosis, but I have been told the eye sockets have a lot of tissue surrounding them that gets easily inflamed - same types of cells as give you sinus (without requiring an infection) in your nose. I was told my intermittent blurry eyes and double vision was likely due to pressure from that.
Really not sure how likely this story is, but given they cleared me for all serious eye conditions, I’ve decided I’m going to believe that unless they become more problematic.
Best of luck @Grandma_J. I so hope it goes really well.
Thank you to all who wished me well on my visit to the Mayo Clinic!
They’re close to 100% sure I don’t have Myasthenia Gravis, which took a weight off my shoulders–except I wasn’t too worried about that in the first place because I had a negative blood test for it a few months ago.
Through all the tests at the Mayo Clinic, any tests you could imagine for muscle or nerve diseases, the doctors concluded that my weak legs are from spinal stenosis. They don’t have proof of that yet, because they recommended me to have an MRI here in my town to know for sure. But, being my back was seriously bad 3-1/2 years ago, and that’s when I had my last MRI, they think spinal stenosis is likely causing the weakness in my legs when I walk. I’m lucky because they said stenosis can cause pain and weakness, but sometimes just weakness. I had the muscle tests in my legs and my muscles work fine (at rest–IDK why they don’t test them while a person is working out). Nerve tests, the same thing! I had an echocardiogram, which showed some heart damage–just a small amount–from the “non-heart attack” I had in 2016.
My eye–they didn’t really have an answer about that. I’m just going to put up with it and use eye drops and try and give them more “shut eye”.
The plan is to start wearing a brace for my back–to straighten it (it’s sort of like a corset and I can wear it as much as I want), a lift in my left shoe because my left leg is slightly shorter than my right, and p.t. for strengthening my back and stomach muscles and to help the muscles around my ankles.
It was a very interesting experience. I kind of wish, though, that my rheumy would have recommended p.t. before going to the Mayo Clinic, but I guess now I know there’s nothing horrible going on that could be a double whammy on top of PsA!
Oh, IDK if I had mentioned this earlier…they did admit that I am never to take statins again.
I’m glad you’ve got some definitive answers. And some plans going forward.