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Kim, that is my point. I have already researched lupus. a least a couple dozen things. I have looked up almost everything I could think of. I am straight up as the articles on the lupus foundation informations as well as other. I am just not anemic and have no ulcers in my mouth or such.
I noticed three nights ago that my eyebrows hairs are falling out. I usually have pretty bushy eyebrows, but now they are thin and the top is cut off flat almost. There are all these tiny bumps, i think called lesions, at the bottom of each follicle. We have found a lot on my head too and there is more in my hair brush too..
…it is safe to say I am losing my hair now…….
so that is added to the list I’m losing between 1/2 and 3/4 lbs a day, no matter how much I eat..
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comLupus is a very good candidate. What I recall of it is that it’s an autoimmune disease that attacks junctions in tissue: most particularly, the basal membrane of the skin, and the junctions in the glomeruli of the kidneys. (There are other sites, but I can’t recall at the moment.) If the docs are chasing lupus, have they kept an eye on your kidney function? It’s not just bloodwork: they also can monitor the urine for anything that shouldn’t be there, like PROTEIN. If a patient is losing protein in the urine, they’ll lose weight fast. Please have them check a urine analysis at the next visit–it’s really important!
Autoimmune and tick diseases can look a lot alike, because the end effect is the same: the immune system gets very confused and starts attacking the body’s own tissues. And–throwing it out there–hair loss can be a sign of inflammation within the skin, because angry skin drops its hair and its pigment. But hair follicles can also dump hairs for other reasons, and bumps in the skin can also be due to local infections, so it’s not a precise diagnostic.
The butterfly rash is one of those “telltale” symptoms in humans, and is definitely worth drawing to your doctors’ attention. Good on you for spotting it!
Ya, lupus is an autoimmune that can affect almost every system in the body. I can cause issues from seizures weight and hair loss to even heart, muscle and lung problems.
If it is what it is, it explains everything. It also explains why my muscles are continuing to weaken and why my feedback loops are repeatedly becoming disturbed right after they are corrected. I’ll ask them about the urinalysis, they did not do that last week.
I’ll be seeing my neurologist’s NP this friday. I’ll be bringing my lists, my picture of the rash and any other info I can find. If it is lupus, then my guess is that the MRI won’t be much use, as that probably would be able to be spotted unless it was causing brain inflammation.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comTrue, lupus may not show on an MRI, although they might have a special contrast study they can do. However, sometimes the docs want to do a diagnostic that doesn’t really match the main suspect because they’re anxious to rule something else out that looks a lot like it. (“If the MRI is negative, then it CAN’T be this other thing, so with that off the list it almost has to be lupus.”)
If memory serves me, there are some specific tests that can be run for autoimmune; Coomb’s test and ANA (anti-nuclear antibody) test come to mind, but I bet there are others. And golly, autoimmune makes sense when considering your muscle weakness, because I’ve seen autoimmune cause bizarre behavior at the junction plates where the nerves attach to the muscles. That patient didn’t have lupus; she had an internal abscess. If they’d done MRI on her, they would have caught it a little sooner, but that was years ago and MRI wasn’t as available.
For all I know, there may be more specific testing they can run on urine these days. But checking for protein is an old standby, and easy to do. If they find high levels of protein, it’s either a UTI (and I think you’d know if you had one) or leaky glomeruli.
Ya, Nichole (my NP) has had them look into the labs extensively, but with lupus and many other autoimmunes, you can run test for months and sometimes years until you get a positive even though it has been there all along. It seems the antibodies are anti-test as well. 🙂 That is why I am hoping the butterfly rash is enough. I am so sure now that this is what it is.. She even marked a not on the last labs not to give up on the labs.
All my persistence has really pushed her to research. And a lot of it. She has been looking into all sorts of things, running labs that would normally be stepped over. She is a great NP, and the many times I have been there, each time with more things together has been a big stir for her to really get to the bottom of it. The one major hole we had not filled in yet was the telltale butterfly rash.
i am just praying for a diagnosis now, and really jump and anxious about my appt on friday..
And in all honesty, if the non-epi seizures were caused by anxiety and stress, then I would have been having them all week this week, and half of last week..Oh but I haven’t had even one..How strange..i must be absolutely AMAZING to have learned stress management sooo well when I am stuck at home, worried about my health, having issues with my mother who is now refusing to talk to me (oh well, her problem, her loss, i am sick of putting up with her crap) so by all means, I should be seizing away.. :stare: :puzzled:
lupus peaking during my so called flare up would make a lot more sense to me, like now would be another peak, attacking mostly my joints,muscles with hair and weight loss sprinkled on top of the cake..Maybe I am crazy, but I think that makes ALOT more sense..
and you’re right it probably is not a UTI, I am pretty sure I would noticed that real fast..
(and huh, I just noticed that grammar wise, U is the the only vowel that you do not really use an for instead of a.)
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comI must be on the right track! I have been referred to a rheumatologist for a lupus work-up regarding my Malar (butterfly) Rash. So glad I was able to get a picture. She (Dr. Lavy’s nurse practitioner, Angela) confirmed what I thought it was and said to make sure I keep tracking everything, that I am watching my weight loss and to eat more if I can to try and slow it down, and also to make sure I bring my picture in to the Rheumatologist.
Thank God that I am finally getting somewhere. If I did not have that photo, I am certain she wouldn’t have referred me. It is a nice change to finally have someone listen to me. I explained to her everything, and even my opinion that the non-epi seizures were not stress related and that picture and the now kno9w fact that 9/10 of my seizures started or ended with the Malar Butterfly Rash was plenty to get my point across. No MRI, which I don’t mind now that I have a direction to go, and if this path ends with nothing (which I do not think it will) then I can always go back and keep looking.
Oh, universe pleeeasse let this lead to a diagnosis..I don’t care if it is as bad as Lupus, I just want a stinkin name for it..
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comHang in There!
I’m sure that everyone reading this thread are all pulling for you and keeping you in their prayers and thoughts!Good Luck! 🙂
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*** Come visit me on deviantArt at http://ela-hara.deviantart.comI sure hope everything works out for you soon. You are showing tremendous strength and tenacity in the face of what seems to be a never ending battle. All my wishes for a diagnosis soon and an even faster recovery to health.
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"COSMIC SHIFT DRAGONS and KI-RINS" and the "OCTOPUS TANUKI TEST PAINT #1"Ok, I suppose I am just whining now, but on top of all of this, I think I have a cold now and I have not slept in four days. **whimper**
I was very near to passing out after therapy yesterday, and really should of stayed instead of calling my ride home. Next time I will stay, I barely made it up the stairs and everything was spinning around and very faded…I hate it when that happens.. I know that feeling very well, and it usually end up with me waking up in a lot of pain on the floor not know how I got there..that is the last thing
I need right now..I am weak enough and in plenty of pain to to have to deal with that right now..and a constant headache..ugh sorry I feel like whining…bleh.
Oh and I thought of an idea the other day..and many friends are pestering me to actually do it, so I want to share on the forums for input.
My artwork is how I cope with this. I was playing in clay the other other day and made a couple of cute little dragons that my camera hates. Any ways, I was joking with a friend that if I am diagnosed with lupus, I am going to make my self a Lupus awareness dragon. She would have a purple ribbon and a red Mahler mark across her snout, like I get.
A friend said that would be awesome, and that I should make some to sell. I thought it would be cool to make some, and then to donate all of the profit to the Lupus Foundation, ya know just for fun!
I was worried that the Mahler mark would offend some people. What do you think?
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.com^Good luck with your application, I hope it works out for you to get one! I think a helper dog would be a blessing to you in a number of ways, and I’m sure you’d be able to take good care of him/her, plus you have Mary that comes by frequently as well if you were to ever need help with it! Too unstable my butt.
Formerly had the Batman & Joker avatar!
Oh ,and I do not think I remembered to post,not sure, but I got a lettter back from Paws for a cause, that they were denieng my app for a seizure response dog on the grounds that I was to unstable. If I was stable, I would be not requesting one, would I?
So I finally got my app in witht the other place a couple of weeks a go, so I am just waiting on them now. still really hoping. I would love a fluffy little guy (porbably a retreiver) and it would be a good reason to be able to get out of the house, you know to walk him and such, and I wouold feel much better being outside on my own with one around.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comI think your idea for a Lupus Awareness dragon is brilliant, and I shouldn’t think the facial markings would offend. People might not recognize the significance of the butterfly marking–which admittedly is the point, to educate people–so maybe he could come with a little tag saying what the mark is, and that people with lupus often show this marking too. I think it’s a great way to teach people about this clinical sign and to also draw their attention to the existence of a disease that doesn’t get a lot of attention in the press. And if even just one person sees the mark and recognizes it, and so helps their friend or family member to a diagnosis, that’s a very good thing.
It’s a little bit sad that the first I learned about the butterfly mark was from reading Blackjack, for crying out loud. :~ We just don’t get good disease education in grade school.
They probably mean that yours seizures are just too random and unpredicatable for a dog to adapt to.
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http://www.sarahjestin.com/feedbacklists.htmI don’t know, but I do know that was sent out the first week of January before things had even neared settling down, and I will say, even though my lupus or whatever else it may be has not, I sure have. I have hit the point I spend most of my day laying down.
I am trying to figure out if I will be able to use $100 next month to get an over the bad table and a table easel so I can continue to paint. I do shake a lot, and it make it hard to paint, but with out some sort pf high enough work area I just can’t do it anymore. It hurts too much. I can’t work every day now cause sitting at my table hurts too much. The clay I do by sitting on the floor against my bed with pillows on either side and a folding chair with a marble slab on the seat pulled right to my chest just so I can stay sitting up without too much exertion..
Therapy is helping. My weakness is still there, much worse than it was actually. On the other hand, I have gained stamina. I don’t have to wait as long to get up when I am out of the pool and such. But walking around my house, or even the really small health foods store (last night) has me panting for breath out of fatigue. it is the muscles.
There are stonger and better day, but they are less and less. I just want to go out and do those simple things, like ride my bike, do my own errands, even walk around the store with out having tu clutch to a cart for the strain on my hips.
I am just frustrated.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comdouble post.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.com
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