Go on their website. They do crocs with no holes in the top and call them ‘work crocs’ or the ‘bistro’ range and they have this amazing nonslip sole. Basically for working in kitchens I assume. But those soles have stopped me slipping on snow and ice (UK levels) which had me very wowed!
Now Mr Lamb what do you know about SCAD as in segmented colitis associated with divertilitis? My biopsy results came back talking about some granulomas which are party crtyptolic (all indicating possible Crohn’s) but the conclusion was unclassified and so basically back to the gastro guy to look at clinical findings re SCAD, UC and Crohn’s. Looking up SCAD, it can mimic Crohn’s pathologically which really got me thinking and generally can mimic an IBD but it’s actually associated with Diverticular Disease (DD) only and doesn’t need the treatment for an IBD. Put it another way I need my issues to be SCAD not Crohn’s if I want to stay on Cosentyx, which I desperately do want to. So any thoughts you may have would be most welcome.
I took a look last night! I’m hoping that this incident quiets down soon. But if it doesn’t, I think I’ll be ordering a pair.
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Well, I have a part-verdict on the foot.
Yes, the pain symptoms fit plantar fasciitis.
Nope, the swelling and the visible heartbeat do not, and no, they are not normal.
Scan number 157 for the year (okay I’m exaggerating) will be an ultrasound on Wednesday to rule out an aneurysm. More likely there is swelling somewhere in the deep tissues of my ankle pushing the artery to the surface where it can be seen. I’m not sure whether this process is becoming a worse medical mystery than a “House” episode, or just slightly farcical 
I guess I’ll have an idea Wednesday. In the meantime I’ll try not to run any marathons on that foot 
I hate when something new pops up, and I feel like I’m going down the rabbit hole. This is exactly why I sometimes just sit on things they are really awful. I’m glad they’re able to get you in fairly quickly for the ultrasound anyway. May as well rule out the big bad stuff.
Yep, that’s right, at least I won’t be waiting 3 weeks worried it’s going to blow out in the meantime! I asked my GP if I really needed the ultrasound and he started off on worse-case-scenarios, starting with, well if you put pressure on it, you probably won’t die
He has a unique style but it works for me
I so hate those rabbit holes too. @Jen75 hope this one is a baby rabbit hole quite capable of being sorted fast.
Seems we are both chasing rabbits at the moment @Poo_therapy ! Fingers crossed for both of us they just evaporate in a puff of bunny fur!!
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Well thankfully the aneurysm Rabbit disappeared just like I hoped it would!!! Yay!! 
Unfortunately the myocarditis one did not, and seems they could still see inflammation on the MRI.
One of those really rare diseases, so a bit hard to tell where things will go from here, as it was just a quick phone call from the cardiologist to tell me not to exercise hard (not likely!!) and cancel my exercise stress test echo.
It’s very unlikely I’ve got the very nasty form (I would not still be walking around), but probable I have the chronic autoimmune type (had it too long to be acute I think). I haven’t actually had time to have a talk to the cardiologist yet though, so I guess can’t rule anything out. My shortness of breath though did improve and is still better after the prednisone taper and Remicade, so fingers crossed I have accidentally been treating it with my insistence at getting the pred when I felt awful and getting onto a biologic again 
Gosh let’s hope what’s going on with remicade sorts this out for you. xx
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Definitely mixed news for you. So because this looks chronic, they don’t really have any good ways to tell you what to expect other than don’t stress your heart. I’m assuming that they are hoping that the biologic will help quiet things down? Much as I don’t like the outcome of the testing, I am glad that you have an answer. This is one of those cases where you really need the answer, because you need to make certain that you protect your heart properly while it is still inflamed.
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The cardiologist is arranging an appointment shortly to go through it all. I am pretty much in the dark until then, and I suspect will probably continue to be afterwards, because it’s uncommon enough that there are no random controlled trials. I’m going to change my middle name to unicorn .
Anyway, you are right, because I was feeling a bit better and starting to wonder if it was all in my head and had literally begun trying to do a minute or two of aerobic exercise (steps) a day when the plantar fasciitis hit - it would have been a very bad idea to continue and intensify those steps!
I do feel pretty gutted. The uncertainty caused by lack of information about the condition, and highly variable prognosis is just marginally better than where I was before - very off-balance but at least I have a name for it now. I don’t even know how we can monitor it. Whilst our version of the NHS is great, it is really not set up for unicorns like me. At $850 each, I’m probably not getting an MRI every month to check medication response. I’m sure the cardiologist will come up with something.
And the Remicade, well things went downhill symptom-wise on Saturday. I hope it’s just that it needs to build up and not antibodies. I’ll talk to the gastro today, I think they plan to test for antibodies at 6 weeks. I might have to do a symptom chart as it is so complicated explaining what has gotten better and stayed better, and what has gotten better then regressed!
Anyhow, enough whinging. My legs still work thankfully, so better get them up to start the day!
I find it always hard to know what one should or shouldn’t do when it comes to the heart. I want specifics or something like a smoke detector strapped to my chest that gives a warning before I do too much. The heart is a muscle and likely needs to be exercised…without going too far. But sheesh @Jen75, you have had a boat load to process. Sure hoping that you will be safe, comfortable and at peace…this can all be stressful and stress is no friend either! Be well!
Thanks @Amos, it sure is a lot to process, but I have been given a heart rate limit so that makes it easier . Now I just need to get a heart rate monitor and a lawnmower man 
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Jen,
If the radiating pain is from the head to the chest, It is probably a vagal nerve being stimulated due structural changes to the vertebrae . Speaking from experience it is the most intense pain I have ever experienced. The good news is that shaving off the hooks in the vertebrae is a simple procedure.
Hope you feel better
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Thanks Keith. It is definitely just radiating from my heart to my back, have been quite breathless again the last few days (and that’s in the context I’m not allowed to do any substantial exercise!). At its worse my SpO2 started reading low (<95, I had read 100 all week on that monitor), then I had an episode of bradycardia whilst asleep. I am trying to pretend my HR monitor isn’t reliable enough for this to be a worry at the moment!
I’m feeling a little nervous about it all. I have received a notification I’ve been referred to the hospital by my cardiologist - I assume for a procedure but don’t actually know. My GP clinic told me over Telehealth that pathology actually wrote a letter to them (I have never seen this before), but only printed out the blood test results (which looked non-specific), not the letter for me to pick up. My gastro called yesterday to see how I was doing, and said the cardiologist had sent him a letter and he was sorry it was worse than he thought (bless him he is unable to be untruthful).
I think I’ll go to my regular GP tomorrow and see if I can find out about these letters flying around, as I am also still waiting on sleep apnoe testing results. I see the Rheumatologist about the vasculitis Monday, and the cardiologist on Wednesday, so I’ll update after those. Be interesting whether a link between the autoimmune stuff and the myocarditis is suggested or denied.
Meanwhile I’m blundering along on Remicade, with my arthritis really very good, gut slightly off, vasculitic symptoms simmering, and heart stuff up and down. And the fatigue is VERY severe. On Wednesday night, I slept 9 hours and woke about 7am. I went back to have my first nap at 9.30am. God I hope one of them can help me with this!
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Night time Baddycardia? Sleep test? My crystal ball says I see a c-pap in your future… If so expect that fatigue to go WAAAAAAAY down. Its almost a miracle
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Well the bradycardia was actually during the day (but while asleep), cause the fatigue is so bad I’m sleeping a lot then too. Yes I’m hoping some of it can be solved by a cpap - something straightforward would be nice
Get hold of those letters. The not knowing and the wondering is often far scarier than the facts. Gosh though you are on a roller coaster ride presently. Hang on in there and massive hugs. xx
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I think you need to see a cardiologist ASAP, because without head pain this is not a vagal nerve issue. It sounds like the heart attacks I experienced under a anti TNT-a drug.
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