It would seem my body has once again performed in it’s perfect 👌🏼 form with impeccable timing ⏱. I think every diagnosis currently on my chart has reared its head and made its presence known in a very big way in the last week with just one day left before I have my next virtual visit with the Wizard (my neurologist).
From the way my body feels I KNOW my ferritin is not responding appropriately yet. I had repeat labs done on 18 February and my Hb had improved from 11.2 to 12.2 so technically it is over 12 and normal/ not anemic. However, my ferritin had only gone from 4 to 10 in two months of 85mg of daily elemental iron (supplemented w/Vit C, B12, folate).
So of course, since all communication now occurs through the portal and results come with note that I’m not anemic now (Hello!!! Who am I!!! This is D Runnerchick who had an iron infusion 5 years ago when this ish didn’t work... when my ferritin was 9. Geez 😒) I want to clarify if I should still be taking the Hemi-Plex. Fair enough question. Actually, the point I was really trying to make without trying to get in her Post Toasties was whether she was going to do an infusion, as that was the treatment plan of my ferritin didn’t come up. Why don’t doctors remember what the treatment plan is? I understand it’s a grey area since technically my Hb is in the “okay” territory. But, we still haven’t determined what caused my Hb to drop from 14 to 11.1 in two months to start with. It’s possible it’s autoimmune but maybe it isn’t and Rome is burning...if you get my drift.
Meanwhile, my SPS makes me feel like I’m the Tinman and I got left out in the rain. My hands definitely feel like RA or Lupus have got them cringing (and dropping things). My face burns when light hits it - EM or Lupus, pick one. Migraines 🤯🤯🤯 no light or noise. I’m glad to be an introvert but quickly becoming more antisocial. Nausea- I know this could be SPS, migraine, or anemia/iron deficiency as could be my propensity to not regulate my body temperature and go from freezing cold (mostly) except for the Erythromelalgia that turns to fire 🔥 in my hand and feet that then makes me not regulate anything. Then there are the drenching night sweats. I’m just living the dream! Oh, but I did successfully taper off duloxetine and it did indeed contribute to my myoclonus. So at least I’m less of a jerk! 😂🤣🤣🤣 and take one less pill 💊 a day.
Not trying to be a DeeDee downer here. I’m just struggling. Been sleeping 10hrs at night and 3 hour naps and can’t figure out what happened or even how to frame this. My usual stellar PCP is out in left field and I’m feeling a bit lost 😠 🦄⚠️
D🏃🏽♀️
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DRunnerchick
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So sorry to hear you’re having a tough time Drunnerchick , it’s a tough time when it all kicks off and so sending big hugs 🤗 I do freely, I wish I could offer helpful advice and insight but alas I can’t, you know that, but give understanding and support I can. ❤️I’ve had night sweats for two nights 🤷♀️ I wonder if caused alongside gastric issues that have raised their heads again🤷♀️
Pleased to hear you’re one pill less and less of a jerk 🤣🤣 hold on to that sense of humour, it’s all a struggle , you’re not being a dd downer , it’s just circumstance, and one of the reasons the forum is great, to offload it . You’re lost at mo but not alone 🤝 hopefully the wizard will help 🙏
Thanks Stiff! I felt that hug. Very important in a pandemic when your bloomin’ state can’t get its act together and according to its current schedule (and the fact I don’t have diabetes, a BMI>30 or cardiovascular dx) and the powers that make up the schedule don’t know what SPS is, I will not get a COVID-19 vaccine until the first week of June!!!
Pic was taken on my walk a few days ago. The first walk in ages. I had planned to walk a 5K next week but I have had to cancel the Shamrock ☘️. I have already registered for the Hop Hop 5K 🐰🐰next month and am still determined 🤞🏼🤞🏼🤞🏼😬Come on Mr/Dr. Wizard! This Tinman needs some oil!
Always 👍🤗 yes I feel the same , I’m not vulnerable in anyone’s eyes but feel vulnerable not knowing a name for my probs which so changeable in part and breathing probs, debilitated with no name, is this where people losing their lives with no known medical condition fit in. Scarey. Scarey still then as it’s not a miracle cure for pandemic just a help, tonight on news a care home whom have received 1st vaccinations have many contracted covid and hospitalised and one death so it’s not a guarantee , just a help. Don’t know when I will get mine 🤷♀️
Your determination is great, but be kind to yourself 🙏 hope your virtual visit to oz is a good one and your oil can is full afterwards and the wicked witch visiting you is banished 🤞🤞🥰
😟 OH D...am VERY RELIEVED you’ll see the Wiz SOON through the ether...am feeling very concerned about you + am greatly relating to how you’re feeling...& the symptoms you’re describing...you’ve been & still are fighting so hard to get through this...you & the Wiz have come such a long way...you both understand a lot more about your 🦓ness...the Light @ the End of the Tunnel is in view, but you haven’t quite reached it...and this lonnng stretch during the pandemic has been Ultra Tough in many many ways...my feeling is: it’d be absolutely extraordinary if you didn’t feel very lost, let alone ‘a bit lost’...so am glad you posted, and am hoping you feel us all caring about you & supporting you: we’ve ‘got your back’...you’ve survived dreadful ordeals, and this one is amongst the worst, I guess🤦🏼♀️! we understand & we’re here willing you the strength to channel the deep inner fortitude that’s made such a diff to your well-being over the years...that fortitude includes the great common sense, strength, determination & professional expertise that’s always shone through every post you’ve shared with us...sending you LOVE ❤️🍀❤️🍀 Coco
Madly, deeply, so vvvv in my 🤍of 🤍s appreciate your words of concern and encouragement. You, have walked similar deep, dark tunnels for much longer, and continue to carry the torch for the rest of us!❤️❤️❤️✨✨✨
Yes, 🤞🏼🤞🏼🤞🏼 the Wiz has some magic 🪄 up his sleeve (he usually does, as he is brill). We shall see. Will update with a plan if and when. 10-4.
I tried to reply to you first thing but my hands wouldn't work I'm so sorry that you are going through this awful time. I wish I could wave a magic way and take it all away.
As I was reading your post I could pretty much tick off alot of your symptoms. Why does everything cream and hurt so much? And the fatigue is like dragging a lead suit around.
.I hope you get some answers soon and things will improve for you
The fatigue does just seem to exponentially compound things. I can be trying to read something and fall asleep in 30 seconds or less. I have since found out it is part of SPS having optic nerve issues that cause muscle spasms in the eyes and just cause you eyes to close. If you’re tired/fatigued enough, you fall asleep. Maybe 🤔 they all add up to 40 winks and I’ll lose these dark circles underneath my eyes 👀 . I am a firm believer that there is always a reason for things and how they happen.
Onward, even if it is slowly and stiffly. I have a book to write ✍🏻 and research to do. Annndddd the laundry 🧺 never ends.❤️😘🦋🍀🌷✨
🏃♀️ Sounds like you are in a major flare - and with some awful symptoms. The anemia and jumping to transfusion without knowing the cause and no hematology consult concerns me.
Would you consider asking the wizard, you trust him, if you should see a hematologist?
Take care. And never hesitate to share with us how badly you are feeling.
I always love hearing from you. He was the one who put in HIS notes last time that maybe a hematology consult would be warranted and then my PCP added the recheck labs and lost her mind and forgot what the tx plan was. This is one of the most frustrating things right now. She has always been so reliable but, of late, she has lost her $&@? Mind. And a mind is a terrible thing to waste! I will bring is up. Just trying to collect all the symptoms and the last 6 weeks of happenings, changes in meds, correlations, parallels etc. and then trying to find the best way to frame it as to not step on too many toes or into a pile of Bandini. I’m just tired of having to be my own doctor and researching when I’m so tired. I’m grateful that I have the mind and education to do it but I shouldn’t have to. THAT is the state of our medical system.
As the great Lin Manuel Miranda wrote: I have one shot! (From the musical 🎶 Hamilton)
Oh I am so very sorry that you are suffering so much. Fingers crossed The Wizard will wave his magic wand and make everything better for you. Huge Cwtches xxx
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Just a Moan because I need someone to hear it! 
Maintenance dose of Prednisolone? Essential or just convenient?
Anaemia still no treatment.
Can't figure out why my skin feels like it's burning.
