I am new to the site

Hello everyone.

I am fairly new to the site. I live in the US. I have been dxs (diagnoised) by several doctors with either MCTD, myelody splastic syndrome and lupus only to have an insurance change or a doc to leave the network or be sent to another specialist that says no.

I have been sick since I was a kid and now I am in my 40's (late) lol. And, I am having the same and some worsening (sx) symptoms. To make matters worse 4 out of my 5 children are all having the some of the same issues. My Middle daughter sx are proably the worse.

I know that autoimmune diseases normally run in family and it is rampid in mine; MS, diabetes, RA, Polymyositis, Fibro, Lupus, and Thyroid.

This site has been very useful to me. It helps to know that there are others who are/have gone through being misdxedor, not dx, have sx doctors have never heard of or refuse to believe the you are having and say you are depressed or stressed and tell you take this pill (Prozac ex.) and go home and rest and you will fell better in 3 months or so.

I am at wits end and full of many emotions not knowing what to do next but wait. Wait until my ANA is higher than 40 again or my wbcs or rbc are lower . Wait until myC3&4 q4 are low and all other anti marker are positive again.

Until then happens I will suffer in this body with all these crazy sx that no one can explain why they are happening other than I am faking because I read it somewhere or I imagined it.

Thank you all for the rant. This was better than my last cry.

List of current sx: most vary some are daily

*Joint* and proxmia muscle pain facial pain @ temple and below earlobe

confussion and forgetfulnes Loss of train of thought

muscle spasams/ tightness in calfs

loss of appetite/ ravinoues weight loss

night/day sweats soaks bed

*pain and burning in fingers and toes and ears daily*

numbness in various places

headache/ migraine

GI issuess

facial rash/ body,

Alopecia/ thinnig hair

lwbc

LMCH

canker sores

cavities (11)

thirst

dry eyes, skin, mouth hard time swollowing and lady parts

Ana 1:40 has been higher this is current statis

itching

*chest pain*

weird felling I cant explain

*FATIGUE* Murder

My body does what it want to do when it wants. Everyday it choses and say I think I will give you this and each year it adds something that can rear it ugly face anytime

17 Replies

oldestnewest
  • Have a look at the Lupus Foundation of America site as well. Take care.

  • No. It will be my next stop.

  • Thank you

  • Hi Tink45, so sorry you are having so many on-going health challenges. I try and take each day at a time, although this can be difficult as human beings tend to worry about the future, especially the consequences of ill-health. I am newly diagnosed with LUPUS but have had symptoms for years on and off. I wish you well, and hope things are brighter for you.

  • Thank you for your response 😊

  • Hi Tink45,

    I'm very sorry to hear that you have been so unwell and keep getting passed around without a confirmed diagnosis or treatment plan. It sounds as though it would be beneficial for you to see a rheumatologist who specialises in lupus so that they can confirm what your diagnosis is and set up an appropriate treatment regimen. I'm afraid I don't have a list of specialists in the US, but perhaps if you contact the Lupus Foundation of America they may know of one in your area? Their website is lupus.org

  • Thank you Paul. I am currently seeking a rheumatologist with- out bias and whom will except my Insurance. I have Government Insurance which I now get since my husband died 2yrs ago. I've been treated differently since. I may have to find a specialist and self pay until i get a dx.

  • Have you had blood tests for Lupus and Sjogrens? There are MULTIPLE tests to determine if you do have Lupus; it also sounds likely that you have Sjogrens (have you had a dry mouth for quite a while.....any dry eye symptoms?).

    Unfortunately you may have to go outside your "network" and find a very good Endocronologist and Rheumatologist. (PLEASE SEE BOTH!)

    Dr. S. (in the USA) Retired Neuro-Ophthalmologist

    P.S. 2% of people who show a negative ANA or very low positive ANA COULD STILL HAVE LUPUS. Many people with Lupus will also have Sjogrens ( as well as fibromyalgia and CFS - chronic fatigue syndrome.

    I retired early because I was disgusted with Insurance companies trying to dictate what test they would pay for as well as the meds I could prescribe. I got tired of arguing on the phone. I spent too much time fighting the insurance companies so I retired a couple years earlier than I wanted to. I truly understand your frustration.

    I assume you have had all these tests:

    ANA

    Anti ds-DNA

    CBC

    ESR

    APL's

    Anti-SM

    Anti-Ro (SSA)

    Anti-La (SSB)

    CRP

    Chemistry Panel

    I know there are other tests I am not familiar with.

    (your Dr.'s will know what all these are)

  • Thank you for your reply.

    A rhematologist said i have both butnwont treat as numbes are not high enough. And referred me back to my Gp. on the search for a good Doc.

  • Let me explain something I was taught years ago in Medical School........"LISTEN TO THE PATIENT". A patient's complaints, symptoms and pain must be taken into consideration when making a diagnosis. NUMBERS AREN'T EVERYTHING...........I DISAGREE WITH YOUR DR!

    You need to find a Dr. that is willing to do multiple tests, take all your problems into consideration, come up with a DX and treat (sometimes you treat empirically). You may have a very low ANA with a low anti dsDNA (6 or 7...........4 or less is considered negative for Lupus - depending on the lab), which may indicate you have a mild case of Lupus, but your symptoms would suggest you need to be treated. I suggest you find a different Rheumatologist.

    BTW: Have all your hormone levels been checked as well? I still believe you should see an Endocronologist as well.

    Dr. S.

    P.S. I am familiar with many Dr.s on the East coast, I don't know what part of the US you live in..........be happy to help.

  • I am going to take your advise. I live in Indianapolis. My Gp said it is not my hormones. I will.sIee him again on 9 -7. I will look for my results and post them. I currently have HIP Isurance but, i am willing to pay out of pocket until i find out what is wrong.

  • I will be happy to review what tests i am familiar with and will ask a Rheumatologist friend to review what he is an expert in.

    Dr. S

    P.S. Good Luck.

  • I have just recently had test and was given a dx of both, only to say after doing other immune testing which took 3 weeks after test came back he would not treat me. This is after he told me i infact had this and would send placquinil (ms) . I had to call him and still did not return email or calls. He referred me to my Gp. Even for the Celebrex he prescrible for arthritis pain.

  • I can totally understand. A specialist in auto immune diseases is a must. Web pages for various Auto immune syndromes can often be able to help you find a reputable Doc. Local chapters of support groups might be able to give you a good referral. It sounds trite, but be kind to your body. Don't push yourself. I wonder if you are also dealing with sjogrens or food allergies. I do and some of these symptoms sound related to that.I am sorry for all the pain and frustration you are experiencing and hope you get some answers soon.

    Nonanona

  • You will learn all you can on this site its nice to know there are others sharing and understanding what you are going thru best wishes on your health

  • 👣👣👣👣👣👣👣👣👣👣👣👣👣

    Hi Tink;

    I think you will be glad you found this Commuinty. You can get a lot of information from us who have some of the same and different issues.

    I to am from the U.S. I live in the southeastern part in the state of Alabama. I am a 56 year old guy, I have been diagnosed with Lupus (SLE), COPD, & Malignant Hypertension.

    I have had a lupus rash/blister on my right foot and I have had to go barefoot for a little over 2 years now. If I wear shoes or even flip flop sandals, it will rub places on my foot raw and will start bleeding in less than 5 minutes. (It's a blessing I live in the south, going barefoot is not an issue in this warm climate). I have rashes/blister that come and go all over my body. This is just one issue I have with lupus. I take 23 medications a day for all of my issues.

    BP yesterday was 218/120 that is another story on it's own!

    Lupus has changed my life. I still am gonna do and go where I want. Even though I do everything and go everywhere barefoot. Lupus will not control my life!

    I have my Mottos

    👣I will not let lupus control my life👣

    And

    👣LIVE LIFE TO IT'S FULLEST!👣

    With this Commuinty you are not alone, we will be here for you.

    Wishing you a good and BLESSED WEEKEND!

    👣👣👣👣👣Tiras👣👣👣👣👣👣

  • Hello Tiras

    Thank you so much . It is such an encouragement to hear from you and all who comment with such love for someone they dont even know.

You may also like...