Thanks, Jen and Poo. Yes, it’s great to have things like MG ruled out–that’s for sure! And, it’s interesting how common those SEs are from Crestor. My husband was put on Crestor a few months ago and now he has a very stiff neck and his hips hurt, along with more back pain. I told him he better consider maybe all his new pain is from the Crestor!
Anyway, I have a question about the foot pain I do still have (and have had since 6 months after my back went out 3 years ago) the question is, could it be partially caused by my bad lower back? I’m wondering if there’s a nerve that goes from my back to the top of my foot–also if that’s why my legs feel weak. I have an appointment with the foot doc Tuesday and I hope he can answer that question. I’m thinking if that’s the case, maybe I should be doing back therapy or exercises to fix this!!! Both of my feet have the same joint erosion but my left foot always has more pain, that’s why I think this could also be nerve pain.
I certainly wouldn’t rule out nerves in your foot pain and weakness - it is great you are getting that further investigated.
I know that I get both pain (which from the descriptions I’ve read sounds like mild neuropathic pain) and weakness in my feet and legs whilst in flare, but it can disappear totally when I’m well.
I also read a bit low on my vitamin B a while back, so I’ve started regular supplements for that, which for me appears to have has reduced it a bit (though it was just speculation and I’ve yet to have a repeat test, so it may just be coincidence).
Yes those statins are a double-edged sword or at least that’s always been my view.
Well! I had a very interesting and informative visit with my rheumatologist this afternoon!!! (The dermy appointment went well, too, but she seemed in a hurry and what I thought was going to be a thorough complete skin exam was a 2 minute glance and say all is good “exam”.)
Back to my rheumy appointment…my joints look great and there’s no inflammation really. My feet, well, I’ve been to the foot doctor and I’m getting orthotics on Thursday, and there’s really nothing else we can do about these feet.
But, we talked a lot about the weakness in my legs. He said it could be one or more of three things…1) poor circulation, 2) spinal stenosis, 3) a form of metabolic myopathy. The first two things are probably not the cause, because my heart doctor told me I have good circulation in my legs and my MRI of 3 years ago didn’t show any spinal stenosis, not that it couldn’t have happened since then, so I guess that isn’t totally ruled out.
We talked about metabolic myopathies. A lot. He mentioned this is usually a genetic thing, but not always. IDK anybody else in my close relation who has had the weakness and sore leg muscles that I have. In June when I saw him he talked about going to the MAO Clinic (I live in MN so it’s not too far for me), but at that time he said whether or not they would figure out if I had a myopathy wouldn’t make a difference and they couldn’t do much about it anyway. NOW, he said something similar, still he isn’t telling me I have to go to MAO Clinic, but he thinks it would give us some answers as to why my legs get so weak. By short distance, I mean 1 - 2 blocks. As I’m walking my legs get weaker and weaker, to the point where I can barely move them. I look like a snail. After resting, I’m good to go for a block or so, then repeat resting. This is totally not normal and I guess I’d like some answers, too. He mentioned my continually high CPK could be an indicator, also. He said usually these myopathies are ongoing and something I would have had for a long time. I remembered how, when I was a kid I was only good for short spurts. I could run a 60-yard dash, but couldn’t race around the block with my brothers and sisters. I never learned to swim, even though everyone in MN learns to swim (land of 10,000 lakes, you know)–I never had the stamina.
He said my insurance would definitely approve testing at the MAO Clinic. He told me they treat this with diet, exercise and supplements. I googled it and it said exactly that. He didn’t seem to think anything I would do as far as those things would make a huge difference, but it would be nice to know if this is what my problem is. I think the MAO Clinic would do tests for other things, too.
Now I have to decide if I want to spend several days at the MAO Clinic having extensive tests. One painful test is a muscle biopsy, but in google it said some blood tests now replace the muscle biopsy.
In a way it would be nice to know what’s wrong, if anything, what I can do about it and so on. I’m really grappling with the idea of doing this…I think I should, but I have so many excuses why I shouldn’t!!!
Oh, gosh, I really do understand your dilemma… I won’t even try to suggest whether you should go or not… all I can do is tell you why I would go:
What is going on with your legs may or may not be a form of metabolic myopathy, your rheumy seems to think it’s the most likely option, but it doesn’t sound like he feels qualified to make that call (or doesn’t have access to testing or whatever is required to make that diagnosis), if he was 100% sure he would have given you that as a diagnosis… so… just maybe… he’s wrong… maybe it is something else, and something that could be effectively treated. The only way to really know would be to see someone who specialises in that sort of thing, and undertake the necessary testing to either confirm the diagnosis or rule it out.
I completely understand how the thought of all the testing would be daunting, and the time difficult to shuffle… however, whoever you see there might just be able to hit on the right diagnosis (or know who to send you to that will)… most of us have already experienced how imperative it is get an accurate diagnosis as early as possible, and how that may mean access to the correct treatment (if there is any available) perhaps early enough for that to be effective.
As women most of us are really good at struggling to keep on keeping on, and that isn’t always the best thing to do.
Take your time making the decision, as it is one only you can make, but please do keep in mind that it might just prove to be worth going whether it be to confirm the diagnosis or rule it out as an option and open the way to find out, hopefully, just what it is you are dealing with.
Sorry to hear that your dermy appt. seemed rushed… although specialists are busy people, it can feel like an appt was a waste of time if they appear too rushed to give you the time to examine you thoroughly… but am pleased for you that she said all is good 
How annoying that they hardly looked at you for the skin exam!
I’m with Janson on this… i would get it checked out too… there’s too many zebras running around this forum to assume it’s a horse… but I also get not wanting to bother… they really keep you there for days to do the tests? How many tests can they do?.. or are they just horrible at planning them and you have to come back for everything separately?
Good luck with trying to figure out what you want to do! Hug!
Thanks for your comments, janson and Cynthia…I’m still wondering what to do. It would be nice to know if it’s something or nothing. If it’s nothing, that would be a great relief because I have enough wrong with me already. If it’s metabolic myopathy, it would be nice for my kids to know because it is genetic.
IDK how they decide what tests to run. If they want to do an MRI, that’s scary because they have to be really cautious and use a different kind of MRI when there’s a stent in the heart. A muscle biopsy scares me, too. Everything scares me, as you’ve probably figured out already! A few days at a hospital having tests scares me–I’d need to put a lot of things aside. It’s one thing going away for a fun vacation, but quite another for sitting around at a hospital waiting for the next test!
The reason it’s several days is because they do every test under the sun so they can reach a diagnosis. It’s a research hospital, and I’ve heard good and bad about it–to me it seems like sort of a privilege to go there.
I’m going to do a lot of thinking on this and asking my kids what they think I should do. My husband already said why bother? I think he’s afraid it would cost us a chunk of money, and we don’t have all that much extra money floating around!
So, we’ll see…
Grandma_J, I reckon you have hit the nail on the head, and your plan is great.
You understand that effectively if the test is negative, it will be a relief, but also not resolve much (six of one, half a dozen of the other), and the biggest impact of a positive diagnosis will be the knowledge - particularly for your kids, so you are going to talk to them first.
I think that’s a great strategy. I know in theory there should be genetic counselors available, and if you can get access to them that might be worthwhile too.
I know if it were me, I wouldn’t want to impose the information on my kids, but I’d like them to have the opportunity to know.
I guess the one thing you have in the situation you’ve described is time - so take a deep breath, enjoy Christmas with your family, and know that whilst it will feel better once the decision is made, it can be easily postponed for a few weeks (or probably years) without significant consequence 
Back to this discussion…I know…boring!
I’ve decided to go ahead with the testing at MAO Clinic, so last week I started the ball rolling with my insurance and doctor. I’m just waiting to hear from the insurance about coverage and I’ll go from there.
I was looking through my lab results to see if I had ever been tested for the HLA B27 gene–it seems like most of the members here have been. I couldn’t find that I was, but from what I’ve read, most people with psoriasis or psoriatic arthritis are positive for it (unless I misunderstood), so what’s the point of testing?
But, while looking for that, I realized I could go back as far as 2004 for lab results! I never knew that–I thought the ones displayed in “My Chart” only went back a few years!
I came across an MRI of my Lumbar Spine from 6/23/2009 that had some very interesting notes. The summary was:
MRI Lumbar Spine – 6/23/2009
IMPRESSION: Degenerative spondylosis within the lumbar spine with
multilevel degenerative disc disease. Broad based disc protrusions and
degenerative facet change demonstrated. This appears to be focally worse
on the left at L3-L4 causing circumferential effacement of the perineural
fat and abutment of the L3 nerve root. No evidence for significant nerve
root deformity within the lumbar spine to suggest definitive impingement.
Question mild diffuse enlargement of lumbar nerve roots focally worse at
L5-S1 versus prominent dorsal root ganglia. **This raises the possibility of **
Charcot-Marie-Tooth syndrome. Clinical correlation recommended.
I’m wondering why this wasn’t investigated further at the time and why my doctors never discussed it with me! Anyway, I think it’s relative to all the weakness I’ve had and difficulty walking any distance, etc.! You can be sure those test results will be sent or brought by me to the MAO Clinic.
I guess I need to ask questions and press for more answers. That’s why I decided to go to MAO Clinic. I need to know what’s going on…hopefully, it’s just my PsA, but if it’s something else, it would be nice to know so it can be controlled (somehow).
Hello Grandma_J.
Don’t worry that you’re being boring. I guess physical ills are boring to a lot of folk, but not if you can relate, which I’m sure most of us can!
I’m not so sure that most of us are positive for HLA B27, I think the stats are pretty low for most people with psoriatic arthritis, much higher with AS. Although I hear what tntlamb says about these categories changing - perhaps that should be ‘higher with spinal involvement’, but possibly only certain types of spinal involvement(?) I would like to be tested but only out of curiosity, I can’t see it making any difference one way or the other.
Seems things may be different in the US with imaging reports. Mine seem to amount to ‘yeah, stuff but hey!’ Really minimal comments, or at least as far as I get to hear. Basically that’s me wondering whether the reports you get are a little too speculative whereas mine are too complacent. Could be. But regardless, if I saw a comment like the Charcot Marie Tooth one, I would want to know more too!
For some time I’ve been noticing a feeling of weakness - my legs just don’t seem to work too well. However that is round the house, when I can get up speed walking somewhere, they’re fine. Again, if that changed I would most certainly want to investigate. Does PsA bring a certain amount of nerve damage perhaps?
I’m glad you’ve decided to go ahead with testing. Sometimes we just need to know. We make the most of our rather complicated, wayward bodies and that can involve strategically ignoring quite a lot of stuff. But sometimes we just know that it’s time to take stock and try to find out more, just in case it helps.
I’m a HLA B27 negative - despite my PsA first presenting in my back, and often being most troublesome in my neck.
My understanding though, is that being HLA B27 negative means the chances it will actually turn into ankylosing spondylitis (with spontaneous fusion of the spine) is much less than if I had HLA B27. Doesn’t seem to stop the inflammation turning up in my spine and causing no end of issues though!
On the other note, given the symptoms you have spoken of, I think that it is a great idea that you draw attention to the comment on Charcot Marie Tooth syndrome - it might be a lead to follow, or alternatively even if they think it is not a possibility now, it would be really helpful for you to understand why so you are not using precious brain space thinking about it!
As a complete aside… sometimes I wonder what my brain could be capable of if I wasn’t spending so much time wondering… is that PsA? Do I need to take steroids tomorrow to cope with X? how many? for how many days? … Now I’ve got awful GERD, and I’ve taken my maximum somac dose, I wonder if the Maxolon will help with that? And why do I seem to get inflammatory headaches? is it in my head or neck? part of my nerves or joints? (dammit, in the spine they are both pretty darn close to each other)… I could keep writing this for pages!
What on earth did I think about before?
They write the comments, but they don’t really offer an explanation. I didn’t even remember having that MRI. I knew I had one in 2012 and again in 2014 (that was when my back actually went out). But, just the fact that he stated ‘clinical correlation recommended’ and I don’t remember any further testing after that. I did have P.T. off and on around 2011 - 2014 and I remember we worked on doing strengthening exercises for my back and neck as well as working to strengthen my arms and legs. They had told me my back was like that of a 90-year old. Maybe I’m just having a senior moment about this, which wouldn’t be unusual!
I hope your weakness isn’t progressive. That’s amazing you can speed walk! My legs aren’t so bad in the house or at work when I only walk short distances between rooms. Going up stairs is a killer. Speed walking–no way! I feel like I’m being pulled backwards when I walk–the farther I go, the slower and more feebly I walk. In the grocery store it’s stop and go and I can lean on the cart, so that’s doable.
I’m not looking forward to the MAO Clinic at all, but it’ll be nice to get the full exam–I think I’ll come away with some definitive answers and hopefully information to help reduce the weakness. I’ve read that metabolic myopathies can sometimes be controlled with diet and exercise and even herbal remedies…
Yes, Jen, I need my precious brain space for things more important and interesting than my health problems. I do tend to dwell on all this at times. Luckily I have a job and tons of other distractions or my brain would be buzzing constantly with thoughts about all the negative stuff!
I know you’ve had this problem with walking any distance for quite a while. And although I am puzzled by the heaviness, weakness in my legs while pottering about, the fact that it goes once I get moving suggests to me that it’s not worth worrying about at the moment. Not sure I can ‘speed walk’ exactly lol, just ordinary fast-ish walking. Which is not to be sniffed at with PsA, I do realise that!
Anyway, I am really glad you’re off to the MAO clinic, I think it’s required. Sure you won’t enjoy it? Wish I could come with you, we’d have a blast somehow or other I’m sure!
I had better google this Charcot Marie Tooth thing. That is one weird name.
They’d probably wonder if we were in the wrong unit, hehe!
CMT—it is a weird name for a syndrome—It’s the last names of the doctors who labeled it. I should’ve copied and pasted what I found on it…just a sec—I’ll see if I can!
There are a million articles…I tried to copy and paste one but I didn’t think it was working. But, the more I read about it the less I think it pertains to me because I don’t have the high arch or hammer toes, etc., that are classic symptoms. CMT probably falls into the metabolic myopathy category, which there are many types. IDK much about anything so hopefully the doctors at MAO Clinic can enlighten me. 
YES! I got the appointment to MAO Clinic! March 7! My doctors are putting together my medical records and I’m to take them along with me rather than them being faxed…I even have a doctor assigned to me there…
I’m so glad this is happening—I hope they get to the bottom of my symptoms.
They’ll probably just tell me I’m nuts! 
There’s no “just”. Embrace a qualifier. Perhaps “I’m COMPLETELY nuts!” 
Anything you say! I might get to see more doctors that way! 
And of course that’s the goal! The more the merrier.
It’s going to be 75f here today (currently 67f at 7:45am). I think winter is over!!
What!? You’re in OH or IN aren’t you??? How could that be so much warmer than MN? We aren’t even going to hit 20 today and we have 4 inches of snow to clean up!