13 replies to this topic

[LindaJoy]

Oh, my gosh...HELLO!!! I have not been able to post in months. I'm so excited to be able to talk with all of you. Like coming home. Anyway, I don't have good news to share. My health has continued to deteriorate. I am now on a feeding tube and many, many medications, mostly antihistamines. I have yet to find a doctor who knows why I'm so sick, but I continue on.

I do have some good news, though. Last July, I became a grandma. Milena JoyAnna, the Joy after me, my middle name. She's an absolute doll.

I am experiencing some symptoms now that I would like to ask about. I have mottled arms, legs and sometimes belly and back, but mostly arms and legs, along with worsening neuropathy. I can't even shower or bathe anymore without feeling as though I'm being stuck by millions of needles or stung by millions of bees. I also have night sweats something terrible, and sweats during the day at times. Anyone know what maybe autoimmune illness could cause these symptoms?

My body is now rejecting all foods, thus the feeding tube. I was going into what the docs thought was anaphylaxis. Then, I had an episode in the hospital and the docs weren't sure if it was anaphylaxis or not. Same symptoms I've had for years that I've posted here before.

Anyway, I was kind of excited to have the mottle skin, as I thought this might be a clue as to what's wrong with me. Any ideas would be greatly appreciate.

Again, I"m so happy to talk with you all again. I hope this finds you all well.

Lindajoy

[LindaJoy]

Wanted to add that the mottling seems to get worse after I drink some of my formula (I have to drink four servings of the formula that goes in my tube to get enough calories and vitamins daily as I can't take in enough through my tube). So, "eating" makes it worse.

Thanks.

Lindajoy

[Reen]

Linda
Congratulations on becoming a grandma! Wonderful news - enjoy the love

Regarding the mottling - does it look like the images here ? If it is looking like the livedico reticularis photos you should consider getting tested for antiphosolipid syndrome. That along with cognitive impairment is what had my rheumy checking for APS initially.

[nmorgen]

Hi Linda,

Congratulations on the grandbaby! Sorry to hear about your healh decline. I can't give you any answers on the mottling, but I have it myself. It's called Livedo reticularis, and if you have EdS, like most people seem to have on the forum it can cause the mottling. I hope you and your dr can figure out what's wrong and get you better.

Natalie

[anna]

Hello Linda,
So glad you have a lovely new grandchild to fuse over, my mum keeps telling me grandchildren are more fun that looking after your own!!!!!!

Sorry to see that you are not doing too well, can I ask if you have ever looked into:-
Symptoms of Eosinophilia

Symptoms of eosinophilia vary based on the underlying conditions. For example, frequent wheezing and breathlessness are symptoms typical to eosinophilia caused due to asthma. In case of eosinophilia due to parasitic infections symptoms may range between abdominal pain, diarrhoea, fever, cough and rashes. Frequent infections, abscesses, pneumonia, mouth sores can also be considered as indicators of eosinophilia. Few other symptoms of eosinophilia include weight loss, night sweats, enlargement of lymph nodes, skin rashes, tingling and numbness due to nerve damage, etc. These symptoms however occur rarely.

Has anyone ever checked you for this condition?
I recall that their used to be a forum for folk with this condition, with a number of members that had to be tube feed as they could nolonger eat anything without reacting to it!!

[LindaJoy]

Thank you, everyone, for the replies. Yes, I look like a couple of the pics you sent, Reen, especially the first one of the arms. Do you have this APS?

Anna, thank you for the info on eosinophilia. I've been tested for it already, since I have EE (of the esophagus), and have elevated numbers in my blood, but not so elevated as to be HAE. Mine are from food allergy, I guess, and some environmental stuff.

Thank you all for the congratulations on being a grandma, too. Another reason, a very important reason, I need to get better! She's 20 pounds already and I can't hold her for very long, but what a doll.

Thanks, again,
Lindajoy

[Reen]

Thank you, everyone, for the replies. Yes, I look like a couple of the pics you sent, Reen, especially the first one of the arms. Do you have this APS?

Thanks, again,
Lindajoy

Hi Lindajoy-
While I have EDS, apparently the livedico reticularis became more pronounced and that had the rheumy checking. Several years ago the criteria use to be having a stroke as part of the criteria. It has now been modified to include any thrombotic event. I have been on plaquenil and aspirin for a number of years. My numbers have stayed consistent so I haven't had to go on blood thinners.

For more information, you could check here at the APS foundation.

best of luck in finding answers,
noreen

[Sarah4]

Noreen/Natalie - Can you tell me what the relationship is between mottling and EDS/HDCTs? Is there also more APS in people with EDS?

[nowwhat!]

Interesting thread - cuz just this morning - got up as usual - was in the middle of what felt like hot flashes (I'm at that age I suppose) - I looked at my hands and they looked kinda red ... when I got into better light - my arms were mottled - and the hands - but not on chest, trunk, legs that I could see. It was a 'fine' mottling - not so large and course as the photos - but definitely noticeable - almost even flat 'rashy' looking. I've noticed that before in the last two years since this dysautonomia stuff came to the fore along with EDS dx. Flushing episodes began this past year - most noticeable within the past month. Guess I'll see if it happens only in correlation with the hot flashes or flushing or seems to be pretty much present much of the time. I've got SFN as well- fortunately it's mostly feet and hands at this point - but I'm never sure whats SFN or what's radiculopathy from spine or even tendinopathy at the shoulders - in the end I guess it feels like I'm not aging very 'gracefully' -- I have found in the evening to help sleep a hot toddy is delicious -- never tried that before - but an actual one ounce measure of whiskey with hot water, fresh lemon juice and a bit of splenda LOL! Of course I'm not driving or anything - but rather soothing the aches and pains and anxieties of the day surrounding bizarre health things.... Blessings to you!

[Reen]

Noreen/Natalie - Can you tell me what the relationship is between mottling and EDS/HDCTs? Is there also more APS in people with EDS?

Sarah-
I only know that livedico reticulari occurs in EDS. I've had it forever but it is much more pronounced than it used to be. I am not aware of a correlation between EDS and APS. APS is found with lupus.

[Reen]

I have found in the evening to help sleep a hot toddy is delicious -- never tried that before - but an actual one ounce measure of whiskey with hot water, fresh lemon juice and a bit of splenda LOL! Of course I'm not driving or anything - but rather soothing the aches and pains and anxieties of the day surrounding bizarre health things.... Blessings to you!

I use to love treating a cold with a hot toddy. Shot of Jameson over a slice of lemon with four cloves covered with a spoonful of brown sugar - fill the mug with hot water. Maybe you might want to try the cloves. I can't do it any more due to mtx.

[Libby]

It seems everywhere I look around here, I find another symptom that I just assumed was, you know, normal. Pale skinned? Makes sense that I can see all my blood vessels through it, right? Right. LOL.

Or not.

I'm of absolutely no help with the 'why', but it happens to me too. Has been for as long as I can remember.

Congratulations on becoming a grandma! She sounds darling.

[firewatcher]

Welcome back and congrats on the grandbaby!
I was hoping that you had been doing great and out living your life. I'm sorry that you haven't been doing well.

[LindaJoy]

Hi, everyone, again. I saw a rheumy at Cleveland Clinic yesterday for the livedo retic. stuff. She verified that, yes, that's what I have, but she doesn't know why. I'm not surprised as no one can figure out why I have anything that I do. Anyway, she said that people with POTS have it all the time, so that could be it for me. She said I don't have APS as my lupus anticoagulant, that was tested a few years ago, was normal. Anyone know anything about that? She said I don't have vasculitis, either, of any kind.

She wants me to see a psych for an anxiety disorder.

Good talking with all of you again. I'm so glad, as always, that you're all here. Sorry you have to be, but glad you are.

Lindajoy