I guess I've been a little quiet lately. Ain't been feeling so good. I've been to see the gp twice since I last updated anyone. Three separate lab runs without anything definitive. Here's some of the highlights:
I also flunked the neuro exam. Aphasia, Dysmetria, Foot Dorsiflexion Weakness, and a positive Romberg and whatever else he wrote down that I didn't catch. I get to ride thru the thumping tunnel on thursday for an mri of the head and brainstem. If nothing shows up, he's talking the possibility of a full body PET scan.
The only thing I can come up with is hemolysis without anemia but no reason why. I just keep spinning myself in circles. I'm bummed.
Thanks for the hug LisaBob. I think I really needed one.
He's really not sure. The only thing that seems pretty definitive is the hemolytic anemia but that always has a cause. It's a symptom, not a disease. The ANA came back negative. Right now he's looking for some kind of brain lesion or demyelinating disease. He also mentioned chronic infection but said that was pretty unlikely with that low a WBC but not impossible. The chest xray showed that the latent TB hasn't activated. He also wants to rule out some type of malignacy. You know, just all those wonderful things that you don't wanna think about.
I dropped by the clinic this morn. The pustular psoriasis on the hands exploded again over the weekend. That's thank's to the dermatologist who didn't listen and decided a shot of cortisone would fix me right up before confirming a diagnoses. He caused a horrific flare that I've had to deal with on top of all this other stuff. They do allow walk-ins so I figured why not give it a shot. The gal at the front desk asked what I wanted and I just held up my hands and said I'd really like to see someone. Her eyes got huge and she said OMG and jumped on the computer and had me in with the PA in less than 5 minutes. Usually I have to wait at least 2 weeks for an appt. Pulled the same number at the pharmacy when the pharmacist asked whether it was supposed to be cream or gel. I asked him which he thought would work best. He grabbed the cream, slapped a label on it and I was out of there in a matter of minutes ahead of a full line of other customers.
It's amazing the reaction you get from them when it's something they can actually see. If only they could see what was going on in the inside.
I've got the mri on thursday and then wait for the report and a chance for the gp to think and go over everything and I go back to see him on the 11th.
I haven't told anybody. The hubby's being so sweet right now cause of the hands and feet. Why spoil it? I just don't know anything for sure right now and everyone's so used to me going in for tests that no one ever asks why any more.
Oh my! Well it sure sounds like u have been thru it these last few weeks. Sheesh....
I do hope u can get some answers though soon. Maybe the MRI will bring something up. Something that u can handle and treat though.. It is AMAZING how these dr's and people work and move when it is something they can see with the naked eye. Almost scary that they really don't take much else very serious it seems. Or unless u have the usual "in the box" type of ailment then they just are clueless..
Well get to feeling better!!! I always feel a little better when I am able to come here and just chat, vent, or ask for some good advice.
Thanks katkatdd. I guess there's something about just saying it. And there's no better place than here. I kinda feel like this place is my medical family. The one place I can really go where people know what it's like. I could probably get pity from my family but that's not what I want. I also don't want them putting on their worry hats if it doesn't turn out to be anything serious. But one thing for sure, I don't feel alone anymore.
I really couldn't ask for a better gp. He's really jumped thru hoops for me and come thru on things when no one else can. He treats me like an intelligent human being. I trust him completely. I just wish he'd hurry up. The 11th seems forever away. I should be able to get hold of the mri report as soon as it comes out though. He's instructed the staff that I'm to get results whether he's seen em yet or not and they can even fax em too.
The PA was kinda funny yesterday. It's the first time I've seen him. He said he was going to go talk to my gp. As he was walking out the door he shook his head and said "Aw, you internet people". I responded with a "Yeah, but it sure saves you guys a lot of work". He laughed. I think the gp told him to listen to what I said. He came back in with a script. I looked at it and asked if we could try retinoids first. He said those could be dangerous. I told him I was talking about the topicals and not the internals cause they'd been approved for psoriasis and I wasn't terribly keen on a 10 day course of doxycycline and all it's wonderful side effects. I'd read that it's supposed to be effective but gosh darn, I'm not going to screw up my digestive system just to treat a rash on the hands and feet. He said ok and gave me the script for the retinoid and told me to hold the other for if it didn't work. I liked him. I think I'll keep him for the skin and let him handle that so it doesn't screw up another whole appt with the gp.
Hiya midwest. I truly appreciate the support. I think I'm begininng to find out what a leper feels like. You're right. Everyone thinks it's contagious. It looks absolutely horrid. These nasty looking white pustules on a nice red background. Luckily it's just on the palms and feet and I can somewhat keep it hidden when I need to but it was almost hilarious the reactions I was getting to it yesterday. Maybe we should all learn to wear our thyroids on the outside of our necks???
Anyhow, It's starting to get light out. Time to go out and see how much damage the tree did when it fell on the shed early this morning. This is the shed that we just put the new roof on last week. The one where the price of metal has doubled. Actually didn't need to put a new roof on yet. Just figured it was getting old enough and we were converting it into a tack room and decided to just go ahead and do it before we actually needed to. It also happened after midnight. About 4am. Yesterday I called and increased the homeowner's deductable from one to two thousand to take effect at midnight. Why???
Hi Helen found you at last hun, its no good asking how you are as i can see your under the weather babe, just to make you smile remember those stockings i had to wear for the dermie? well il let you into a little secret as it was warm weather i didnt fancy being all sweaty in them so i cut the top off one and wore just that i really looked a right nutter lol : i think he must have thought i was weird hey he gave me a right funny look with a grin. anyway hun you made me start looking at my bloods after looking at yours lol i have been full of pain in my spine again but its going from the top to the bottom now some pulled muscle hey thats what they tell me anyhow. well lots of get well love and hugs kassi xx
Hi Helen, I wanted to pop in and say that I hope that you get to feeling better soon. Medical problems are a pain...some of us have more than our share. I hope the MRI goes well. Obviously you have had them before to refer to it as you have. I have had a few myself. Good luck with it all. Sending warm thoughts and prayers your way.
Now kassi, I'm so glad you popped in. We need to liven the place up a bit. Nothing more cathartic than a touch of laughter.
Actually the weather's been gorgeous. Warm, dry. More like autumn than august.
There's a name for those bands that you wear around the thigh. If it weren't for the aphashia, I might even remember what the name is. However, they're supposed to be sexy. Maybe that's why he grinned? Man am I glad my brower's got a spellchecker. I've been having a wild time with words and typing and writing lately. And here I am registered and paid to start class on monday. Medical terminology of all things. This is going to be a blast! I don't know. Maybe the practice will do me good??? Strange thing is the word might come out wrong but as soon as I reread it or get a funny look from someone, I can correct it. I asked the gp if it could just be from distraction and being so tired. He said the forgetting words might be but not the complete word substitutions.
Sorry for the interruption. I had to meet the ambulance at the hospital. My mom's bp shot up. I've just spent the last 24 hours there. She's going to be ok but they're trying to keep it under control. I got someone to stay with her tonight so I can ride the tube tomorrow.
I'm ready to drop. I shall return.........................
Hi Hun this is just a quick one as its late im dropping too i feel like my adrenaline is running high i was awake the other night most of the night i might add i just felt wide awake i have a lot on my mind tho at the min with my daughter due to start university in 4 weeks and my other daughter has had twins 4 weeks ago and the hospital are sending them for test as they say there one has very soft bones in her hips and the other has very soft spine and they need to check it out, anyway hun give my love to your mum hope she feels better soon, what is aphashia, lol sorry for being thick babe and those bands are stockings lol! what are your classes for. you know what when i took to people i keep forgetting my word and i have to wait minutes before i remember it and it happening too often lolspeek soon love kassi xx
Hey lori, didn't mean to snub you. I just dropped and ran when the call came. It's the 4th one in less than a year. They did my pituitary last fall and then gave me a scare this spring by calling me back for another look at an area on my breast. We're in a holding pattern on that problem until next spring's mri to see if there's any change. The gp wants this one compared to the one they did when they did the pituitary.
I had my ride thru the tunnel. It was the best rest I've had all week. I didn't want it to end. There's something that looks like it might be a brain in there but that's all I know until early next week. The tech said about 48 hours for a report to come out.
Mum's home from the hospital. They ran every test in the book. She's in perfect shape. The doc's adjusted her bp meds and she seems to be doing fine now.
Kassi, You poor thing. Sounds like you've got a lot on your mind. I sure hope everything turns out alright with the grandbabies. You still planning on seeing them at xmas time?
Aphasia is difficulty with language that's usually due to a problem in one of the speech centers in the brain. I'm not only forgetting words but I'm substituting words. That's the part the gp's concerned about. He says the forgetting can happen to anyone. I've always been an excellent typist. Now I go to read what I typed and the words are wrong. They aren't typos. They're actually words and they're even spelled right. Just not the words that are supposed to be there. I think something and type something else. I do it with writing and speaking too. As soon as I see it, I know it's wrong and if someone looks at me strange, I know I've said something weird. If I slow way down I might get it right. I'm spending almost as much time correcting what I type as I do typing it.
There's a name for a thing that women wear on their thigh. The thing the groom takes off at a wedding. Now come on someone. Anyone. What's the word for it???
My first class is medical terminology. I'm getting my degree as a medical assistant. This class is learning medical words. How to spell em and pronounce them and what they mean. It really might be interesting to see what this language thingy does with that.
Now I must go eat. I'm hoping things will settle down a little bit now. I'm getting to the point where I'm barely functioning. It's hard to tell what's not right and what's just plain exhaustion.
Hi Helen Oh babe im so sorry for you that is so weird let me know how your results are these lessons could be good for you then hun, but look on the bright side too it could be usefull if you wanted to say somethink to someone like your dermie you sent that email to, i mean for instance if you want to say! you really dont know much about your p---k opps i meant job sorry i have a problem lol. you could get away with it, write him another email for what he put you through no only joking hunny wanted to make you laugh, seriously though it must be a pain for you as if your not going through enough, i am really pleased your mum is ok, yes i am planning on still seeing the twins at christmas i cant wait, and that thing that women wear on the top of their leg is a GARTER yeah! got there in the end it took me a while to catch on to that one lol! hope you enjoyed your food hun & dont worry about coming straight back to us on here as long as you let us know your ok you need to get some sleep when you can and get well, although we love talking to you your mind needs some rest loads of love and hugs to help you get better hun xxxxxxxxxxx kassi
It is really strange. It doesn't have any effect on my reading though. That's good.
I don't think I'm going to be writing the dermie again. I'm starting to think that when my lawyer/solicitor picks up his computer on tuesday, I might just show him my hands and ask him what he thinks. Every time I look at them I just get furious. The fingertips aren't affected but the palms are so sore I can't pick of anything if it requires more than the fingers. I can't grasp anything and I know you can imagine what kind of problems that could cause. Even a doorknob is tricky to open. I can't ride. I can't garden. Driving is a real thrill. It's making it really difficult to run my business. And my feet are the same way. There was absolutely no call for that cortisone shot. It's totally contraindicated for psoriasis and he even wrote psoriasis as a potential diagnosis on both the pathology request and his office notes. What the hell was he thinking??? Ok. I've blown off steam.
You did make me laugh.
Christmas is coming up fast. I bet they're adorable. Are they your first grandbabies?
That's the word!!! I knew if you caught it, you'd find it funny. One gold star for kassi. Now all I gotta do is remember what I said that was so funny. lol
I'm ok. I did get a good night's sleep last night. Some of the exhaustion is lifting and I'm starting to feel more human. Fall deep enough into a cess pool, once you come up for a breath of air, it feels pretty good.
So what you been up to? You been staying out of trouble???
It is great you still have a sense of humor in your pocket. Geez I hope they cultured up one of the pustules. We had a bunch of people around here with some nasty cases of staph last fall. And one child I know of went systemic and had to be treated in a not local hospital. It took them a week to get it under control.
The only way to survive is to hang on to the sense of humour. It's terribly twisted though and some people think it's downright sick. But hey, whatever floats your boat.
The gp cultured the feet about a year ago. Sterile. No yeast, no fungus, no bacteria. The biopsy in june also tested for a fungal infection. Nada. The only thing in em is neutrophils and lots of em. Very good thought though. I've been immune deficient all my life and am quite familiar with nasty infections. I know in my gut that these pustules aren't infected. They just don't feel it.
The gp offered me high dose doxycycline cause of it's anti inflammatory effects. I'm going to try this new cream first though cause I'm just not ready to put up with a case of colitis, thrush and a yeast infection from hell right now. It's a never fail deal with me. Besides, tetracyclines and erythromycins are the only antibiotics that I haven't had an allergic reaction to yet and I'm not sure if I wanna test that right now either. I really don't wanna have to go a systemic route to treat this stuff if I don't have to. They seem to be clearing right now and I was even able to use one of them last night. I'm cool.
Hi Helen Glad you got some sleep hun it does refresh you a bit, and pleased your hands are improveing too, I built up some energy and went out last night with my husband and daughter to a friends leaveing party as they are going to live in spain in 2 weeks time, had a great time had a little too much to drink i was ok though, i dont normally drink but needed to let my hair down for once lol! and as for keeping out of trouble well i think trouble just follows me around, my friends husband was takeing a picture of my daughter, hubby and myself when this great big hunky fella trys to get in on the picture so my friends husband told him to move out of the way he didnt like this and turned nasty all was sorted in the end tho,whew! he kept hanging around me when i danced ,i always get the tag ons hehehe, then i got another one danceing with me he said u with anyone i said yes my husband hes sitting right there at the side of me he said oh S--t, i couldnt stop laughing i have this weired sense of humor too, he was cute though lol! i go with never trouble trouble till trouble troubles you. My Thyroid didnt let me down all night bless it, i was thinking if i could wear it on the outside it could be a dickie bow and i could put flashing lights on it and put the damed thing into party mode lol! i think i may party regular see if i can make the thyroid give off a permanent release of energy probably cause more trouble it sure gives a good kick of adrenalin. lots of love kassi xxx
Let us know when you get your MRI report. I am so sorry about the hands and feet and nuero findings. That gives me chills and itchies just thinking about the hands and feet. I itch enough on my own.
My Hashimoto's antibodies are the ones responsible for attacking my brain and causing the effect your neurologist is looking for... My ANA came back negative as well. So they did the spinal tap and MRI. My MRI was a big bust, nothing unusual or obstructive in the scan. The only thing that spoke true was the spinal fluid test, I had some kind of demyelinating disease and an increased spinal fluid pressure the only one that my MD and I could find to fit was hashimoto's encephalopathy. Whee, but you know that story.. back to you. I am not saying this is what you have by ANY means, but when was the last time you had the fun experience of a spinal tap? You think they will do that next if your MRI comes back "NORMAL". We know that the MRI is not 100% , well what in the ART of medicine is..
I wish that you had had better luck with the neurologist. Mine has got me in the white maze and is at the let us watch and see what happens mode. I think he is excited to get me early.. he can watch the decline. Sorry I have been out of the loop and not reading through as many posts. I am trying to take care of back log now.
If we learn by our mistakes, I am working on one hell of an education.