biopsies today

I think the blood test will come later.  I tested negative for  HPV on my last abnormal pap in december but I was positive for HPV 22 years ago which could lead to skin changes such as dysplasia, VIN.  The biopsy should show scleroderma in the skin as well. She is sending a note to my GP so that  further testing will be done. I have issues in my throat and some trouble swallowing whuch can be a symptom of scleroderma. I read that scleroderma can occur ib LS patients. 

Thanks for the positive thouggts for healing. Still have disconfort thus morning.

So sorry that you are still so sore.  Hope that will be better soon.  I just read something about HPV and how once it's gone, it's gone.  Did you get negative follow-ups for HPV after the positive one 22 years ago?  If so, it may not be the culprit here.  My understanding is that it causes those problems only if it's still active. Your doctors obviously will be your best guide on this.  Scleroderma is not something that either of us or anybody wants (which I also have the bloodwork for).  I am glad that the biopsy may be informative about that.  How long has the trouble swallowing been occurring?  That is concerning.  Geez.  These autoimmune illnesses can be scary and difficult.  My thoughts are with you, Shari!  ---Suzanne

Yes Suzanne that had me confused about the HPV because it was negative in December. But perhaps im positive for a different strain. Its all confusing. The gyn said my perineum turned white with the vinager which can indicate the HPV being presant. I sure hope its not scleroderma. My sister at one point thought she had it. Drs still have not put a diagnosis to her horrible symtoms. I've had the swallowing issue for years but just this past year it has felt like something is constantlu in my throat. Just thought it was from the acid reflux. My mother cant eat certain foods or she will choke. I have noticed when I eat certain things they stick in my throat and I have to drink lots of water. I mainly choke on liquids.

Hopefully I wont have to wait too long for the results.

Oh, Shari!  Hopefully it isn't schleroderma, or if it is, it's stable.  You've had the throat symptoms for a while and only has been progressing some this past year.  Has anything else changed this year?  I agree with you (in another post) that it would be good to hunker down and really try to help put all of this into remission with very strict approaches to diet and lifestyle, lowering stress, etc.  Now, on to positive thoughts and creating a sense of hope and wellbeing....Love and healing thoughts to you!  --Suzanne

i have noticed some of the other changes as well. In the past year Ive had strange bloating in my stomach.  Have had diarreah which was never a problem before.  my hands and feet get cold but dont turn blue like reynauds. they do swell and get warm and itchy.  thought that was part of my uticaria.  Ive had a few episodes of fast heartbeats. My mother was put on a pacemaker for fast heartbeat.  I have joint and muscle pain.  I do have carpel tunnel, so they believe, which causes tingling in my hands along with weekness.   Ive recently had spikes in my blood pressure which I have always had low blood pressure, could be stress related, white coat syndrome.  along with the acid reflux that I have had for years. my father died from esophigial cancer due to reflux. so there is all that but could aslo be explained by other things.

I wont worry about it unless the biopsy shows it in the skin, and even then it could be the localized scleroderma.

thanks for your healing thoughts Suzzane

You have many of the symptoms i had prior to being diagnosed with PBC. Its a blood test that can check the anti nuclear antibodies. Also an auto immune disease but very easily treated. Its one of those silent conditions that is usually found when testing for other conditions.  After starting meds for it all my symptoms you describe went away. Its worth a thought but i could be completely wrong. 

Wilma. 

Thank you for your input Wilma. I know my symptoms can be a part of many things. I would love to get the blood tests but my doctors are always reluctant with my insurance. Hopefully I can push them to do more tests. 

Thats something here that is good then. I never pay for bloodtests and they are covered by medicare and free. I am also on a pension so that may make a difference. Good luck.

wilma

Now I'm especially concerned, Shari!  I agree with Wilma that you need some diagnostic work!  You need someone to sit down with you, listen, and run some tests.  I've had a variety of the symptoms over the years that you've mentioned and they are not fun!  Someone really needs to take this seriously and have a look, especially at your blood and maybe at other areas like your esophagus, and heart.  You are trying to be brave and find logical explanations, but all of these symptoms may very well be related to something going on, like Wilma suggests. We wouldn't want it to progress if it is treatable.  I'd recommend that you not be so nice about this to your doctor, but insist on at least basic tests being run.  I hope that I'm not coming on too strongly about this, but I do wish that you will look into it soon!  By the way, what is happening with your sister's health?  And both of your parents have had struggles, too.  All of this must be and have been so challenging to you.  --Suzanne

You are so right Susanne. I need to be a bit more forceful. I have one good dr at the clinic that listens to me and it can be a challenge to get an apt with her , they always send me in to someone else. They only did the metibolic panel and lipids, I made them check my thyroid again recently. 

I haven't been having the fast heart beat lately so I never mentioned it. They know I have a murmur.

My poor sister has been dealing with a lot last couple years. Musle twitching and weekness, nerve issues. They keep saying fibromyalgia or MS. They cant do brain scan because she has old screws in her face from jaw surgery. She was born with Rygers syndrome so has had to deal with enough already.

Once I hear back from my gyno I will make apt with GP about my throat

Suzanne. These auto immune diseases run in families. My brother had genetic work done for his Auto ommune disease and was told we have ver high risk genetically. My sister has lupus another has an autoimmune type of rheumatism that is defirming her hands. I have primary biliary cirrhosis and was diagnosed with fibromyalgia and reynards disease. Now lichen sclerosis. Many of these diseases are cross over diseases. I do believe that Sha? Needs to get pushy and get answers. I was sent to a general physician to get the pbc diagnosis 15 years ago. I too used to be treated like a winger. Its really important to see the same Dr. Hm heres me saying that and not able but do push till you get answers. 

I wish you luck. Your instincts are there for a reason. Listen to them. No one else will if you dont. 

Wilma. 

Is your sister's condition also spelled Rieger Syndrome--the genetic disorder?  That sounds so difficult.  I'm glad to hear that you may push for more medical attention.  Someone needs to look at the big picture with you, as well as some specific concerns!  Good luck, Shari!

Yes Susanne, I always spell it wrong, her and one of her daughters has it, they do have one of the milder forms thank goodness but still a tough battle. My sister is almost legally blind because of it.

So sorry to hear about all the health issues that your family has had to deal with Wilma!  That is a lot.  Yes, there are some genes that are associated with all of these disorders and then there are the epigenetic triggers that turn the genes on (or puts them into remission, with luck).  My family has a number of these disorders, too. I am always very curious what we can do to affect our gene expression and am frequently thinking about how to slow down or reverse the progression of a number of autoimmune disorders that I have, too.  Sounds like we both keep adding to our list.  One of my first autoimmune disorders was celiac disease (autoimmune gluten intolerance) and I've heard that the average number of autoimmune disorders that a celiac gets is seven.  Yikes!  

Oh, that sounds so difficult for your sister and your family, as well as for her daughter.

Oh Dear Suzanne. I have only recently gone off glutten.  Lactose was an issue straight after my gastric bypass 5 years ago. Have had upset tummy since then. I have found out since then without gastric juices i malabsorb many vit and minerals and also with the liver disease i have the problem doubled. No matter what i eat i have the runs daily. I cant process foods and get the nourishment i need. I have pretty pathetic gastroentolagist i see six monthly who does not even order the anual ultra sounds i am meant to have or the three monthly bloodtests i should have. Its really difficult here. You people are so lucky to have the great specialist etc caring for you. I basically have to research and then tell my Dr's what i need. 

Any way enough sooking. Its a glorious day and i am going to work in the garden while the soil is moist and soft. 

Have a great day. 

Wilma. Ps. Going out without the under ware to garden. Lucky we are remote. Lol. 

Wilma--You have four autoimmune disorders and compromised digestion from a gastric bypass.  Only after your bypass did you find out that it would lead to digestive malabsorption.  And your doctors don't seem sufficiently involved or attentive.  Goodness.  That is too much!  I hope that you are taking some good quality vitamin/mineral supplements to compensate for what your poor tummy cannot adequately digest!  Still you have a great attitude!  Thanks for writing.  I hope that you have a nice day in the garden. Suzanne

The three of you are an inspiration!

Suzanne, Shari and Wilma.

Wilma Suzanne has got the answers she needs through testing...but like you she does all her own research. She has also instigated protocols that I've also discovered through research ... I am so happy that we can now discuss, move forward and support each other in exploring these serious matters but with vision faith and good hearts. At last. Lets focus on this activity and make this  the best space for healing on the internet !!!!!!!!!!

With love and laughs....from marey xxxxxxxxxxxxxxxxxxxxxxx  

Thats good news for her then. I strongly agree we need to be in control of our health. My husband is very supportive of this too and is also always researching alternative remedies. Really glad to have found you very supportive friendly women. Look forward to talking in the future. 

Wilma. 

oh thanks wilma....!

I've just sneaked back onto the internet...but i should be doing something else...however we'll catch up soon. great to have you on board!