What is going on?

Over the summer I started having problems with my hands and I was extremely tired. I was diagnosed w/reynauds, then my doc ran more tests and I had a positive ANA w/a homogenious pattern and was diagnosed w/Lupus...2 months later they repeated the tests and other testing which showed that I had a lot of swelling and once again I had a positive ANA w/a homogenous pattern. I went to the Rhemy who is trying to figure out what is going on, he did a antifosfilipids test which came back in the normal range and all the other blood work came back in the normal range.
There are times when I itch so badly I want to rip the skin off, on top of that I can wake up after sleeping 8-10 hours and still feel exhausted. My bp is going up and I will be put on meds when I see him nest. Rhemy doesn't want to say Lupus yet and I am frustrated!

I had them do Lupus blood work Ch50 and its high, immunofixation and it reveals an polyclonal increase both of these tests are used to for Lupus patients. My latest symptoms are headaches~which could be due to increased Bp..I am frustrated!

Hello Mia,

Like Ann said fatigue is a main issue with Lupus and alot of other autoimmune diseases...did your rheumo say what degree of raynauds you have..if not you need to ask him if you have primary or secondary.

I'm pleased your Antiphospholipid syndrome test can back ok...that shows if your bloods clotting or if you've had DVT like myself if your bloods keeping fine.

Your ANA w/a homogenous pattern coming back positive on both times is when you've been tested for Lupus, RA, Autoimmune disorders, sjogren's syndrome and scleroderma which comes with Rayanuds suffers also, as i have scleroderma also....why your rheumo is still questioning Lupus i have'nt got a clue when your results are staring him in the face unless he's a rheumo who wants total proof more.

Swelling can come from RA if you have that besides SLE, which those tests was run for and your itching can come from Raynauds if your not getting the correct temprature for your body...have you had any skin trouble otherwise?

You'll need BP tablets with it rising and this alone can cause exhaustion on it's own and your headaches can come from the BP and if you are Lupus related that causes headaches besides.

Try and keep carm as you won't help your situation, until he finally gives you, your proper diagnosis.

Love & hugs Terri xxx

Hi Mia,

Your welcome and the Raynauds can make you itch anywhere, as i have that if i can't get the right body temp and if you go to hot it can cause it and if you go to cold, it's a total nightmare to live with as i'm not going to lie.

I'll wait to hear from you Mia and i hope your class goes well.

Love Terri xxx

Mia said:

Thank you so much Terri! hugs

The itching isn't any one place it can be ANYWHERE and it will drive me NUTS! I will write more when I get back I have to leave for class~but, the inflammation markers are all high showing inflammation. I don't know which type of Raynauds I have...thanks for your wealth of info xo

Mia



I can understand your frustration, but give the new rheumy a change! He may just want to watch you over time before he gives you a diagnoses. Remember there are false positive and false negatives to test with blood. Also, I am not sure if you spoke to the doctor about the frustration, so if not I would suggest doing so and see what he is thinking or why he has not given you the diagnoses yet! If he put you on medication that is a strong indication! I was not diagnosed for over 25 years so I can truly understand!



Best of Luck!



Deenie

Hi Mia,

You started a wonderful discussion here, and it is frustrating for sure. I think I have Raynauld's now, I showed a co-worker yesterday, my fingers. Her's are cold and she's wearing gloves with the fingertips out already. She said 'they're blue!" yep, at first I thought it was my imagination, and my husband said "they're dirty?" when I showed him the other night lol. There's nothing easy about this disease, and we are all different.

Ann, I think I will be the exception: to thank my doctor for this diagnosis. I have an appt with my GP, who is the one that "the lights came on" when I described my symptoms. I'm sure he saved my life.

Love you all, Trisha

Hi Mia,
You are definitely not alone. It took me years to actually get the diagnosis and everyone I saw kept running the same tests over and over again. I don’t know why they hesitate the way that they do. All I can say is that it is still a very complex disease that is still very much in the unknown category. I also suffer from major issues with my hands and feet, I get the itchy skin and no matter how hard you look there is no visible cause for it, and I am now on meds for high blood pressure. Fatigue is one of the first signs I had and people don’t understand that by fatigue you don’t just mean that you are tired because you stayed up late the night before. It is a physical and mental exhaustion that simply cannot be put into words and cannot be understood unless you have experienced it. I agree that one of the hardest and most frustrating aspects of all of this is when people say you look fine or I know someone who has lupus and they are fine…are you kidding no they are not fine!!! No one with lupus is fine!!! The blood pressure meds may help a little with the raynauds and although temporary wrapping your hands up in a heating pad sometimes gives you a little relief. As for the itching I have not found anything that helps with that ;(
I wish you the best of luck and hope knowing that you are not alone helps a little.

One more thing about your headaches. I have those too which I never had before and there are lupus migraines. Could be a combo of everything!!! Lupus, bp, stress caused by all of the above!!

Hello Mia,

I hope your keeping ok today and that member's have helped in such a large way.

Hugs Terri xxx

Well i know i was dx'd first with psoraisis and Rayanuds then bloods took and the next thing i know...i'm over to the rheumo department with furthur bloods being done and diagnosed straight away.

Since then all my bloods keep showing positive and certain autoimmune diseases are in secondary degree besides Raynauds.

Terri :)

Mia, I don’t know if you live in an area with a large medical community or not but I do and I had several docs even a rheumatologist tell me I did not have lupus or RA. I was lucky enough at the time to have had a primary doc who did not believe this to be true (she has since gone into research so I lost her…ughhhh!!!) but she took all my tests and labs and faxed them to a rheumatology clinic where a team of 10 docs go over your stuff together. They do not take patients until this process is complete so when they called to schedule an appt I knew I was in trouble. Low and behold they immediately told me I have lupus and RA. I went back and counted…my rheumatoid factor came back really high 9 times along with a positive ANA and a whole lot of other crazy lab results!!! No matter how frustrating just keep insisting and be your own advocate because no one else will!!! You know your body and what you are feeling so don’t let them blow you off. I can’t tell you how many times I heard the word “virus” when this all first began…I was ready to lose it!!! When you get a moment try googling lupus clinics and see if you can find a team of docs to go over your labs. I also have a big huge binder full of all my medical junk and you are right it is the best tool you will have throughout all of this. Good luck!!!

Ann,

Who are you refering to Mia or Trisha...as i'm not thinking anyone on this discussion could have been born with it?...i was just stating how i came about to find out how mine began.

Therefor though there is many like myself who are diagnosed to then find out that they was born with it.

Ann A. said:


Terri,

Are you the one who thinks that she might have been born with autoimmune issues or developed them as a child but did not get diagnosed until young adulthood?
Tez_20 said:

Well i know i was dx'd first with psoraisis and Rayanuds then bloods took and the next thing i know...i'm over to the rheumo department with furthur bloods being done and diagnosed straight away.

Since then all my bloods keep showing positive and certain autoimmune diseases are in secondary degree besides Raynauds.

Terri :)

Hello Ann,

Disarraycarr is'nt "Pissed"...she's a new member trying to come to terms with Lupus and also taking plaquenil...and these drugs can be a life changer to a good many besides frightening...that's more or less what her status is saying.



Ann A. said:

Look at this status - She says that it has only been a month and she is already sick of taking the meds ... She is newly diagnosed, she has started her meds, and she is "pissed."

http://www.lifewithlupus.org/profiles/status/show?id=6320638%3AStat...

I am diagnosed for 46 years. I spend a great deal of my energy trying not to be frustrated and angry.

Hello Ann,

My main concern was how other member's would take it, as we all know how Lupus can get we down at certain levels besides taking new meds like i mentioned.

Ann it was'nt offensive to me...my concern was other member's viewing it.

Terri :)

Hello Ann,

I was stating what can actually happen with diagnosis and also refering myself...i bet there's a good many out there with Lupus and never knew they've had it and just suffered from anytime in their lifes.

Ann if your like me it does make me have nausea bad and concentration gets poor while coping with it and sorry to hear your having to take it again, do rest well as you know it's important to we all and i hope your feeling alot better later.

Love Terri :)

Ann A. said:

Dear Terri,

Thank you once again for taking the time to respond to my post. You are the person about whom I was thinking. You wrote "Therefor though there is many like myself who are diagnosed to then find out that they was born with it." It is not my intention to offend you by telling or incorrectly telling your story.

In fact, I just started taking Plaquenil again a few days ago. My last attempt to take the medicine left me frustrated. Perhaps the medicine is intefering with my ability to communicate. That has happened before. So it is time for me to go off line and try some of the stress reduction techniques that I use when this frustrating disease interferes with my ability to communicate effectively. I look forward to chatting with you again when I am feeling better physically and am less frustrated by lupus and lupus medications. Please feel free to correct any other errors that I have made.

Ann A.



Tez_20 said:

Ann,

Who are you refering to Mia or Trisha...as i'm not thinking anyone on this discussion could have been born with it?...i was just stating how i came about to find out how mine began.

Therefor though there is many like myself who are diagnosed to then find out that they was born with it.

Ann A. said:


Terri,

Are you the one who thinks that she might have been born with autoimmune issues or developed them as a child but did not get diagnosed until young adulthood?
Tez_20 said:

Well i know i was dx'd first with psoraisis and Rayanuds then bloods took and the next thing i know...i'm over to the rheumo department with furthur bloods being done and diagnosed straight away.

Since then all my bloods keep showing positive and certain autoimmune diseases are in secondary degree besides Raynauds.

Terri :)

Hello Mia,

I won't touch steriods either and plaquenil is not a steriod i'm on 400mg at night it's an Anti-malerial drug and is for DLE/SLE a good combination for both and it takes upto 6mths to work but when i first took it i felt my skin difference just at nearly 3mths, it's all according to the individual.

It can affect your eyes and before your able to go on it an opthamologist must see you to check your eyes to make sure your ok to take it and if you can, your surposed to see them every 6mths afterwards.

It can causes side affects some have them mild, some more severe and alot of members have felt nothing...the same again all down to the individual person.

http://www.drugs.com/plaquenil.html

http://www.drugs.com/sfx/plaquenil-side-effects.html

Hugs Terri xxx

Hello Mia,

You can get your fingers wrinkle on the tips, whatever you do don't grow your nails keep them short at all times because growth with make your fingers and finger tips more painful, typing hurts mine so i where cotton gloves but apply cream first as it adds warmth to the hands besides.

If you hands feel like a leather feeling you need to check with your rheumo to see if you have scleroderma as that causes thickening of the skin besides oher issues...i have that besides and with some people it comes with Raynauds.

You should find this link interesting about Raynauds in general and what is causes besides scleroderma.

http://www.umm.edu/patiented/articles/what_symptoms_of_scleroderma_000088_2.htm

Your hands do swell with it and if you have RA with lupus that's another added bonus, sometimes your fingers can feel like frost bite.

Love Terri xxx

This discussion is amazing, it has just started turning colder here, and in just a week, my hands are drying out. I'm work in a warehouse and they haven't turned all the heat on yet. I've noticed my finger tips getting bluish and I'm getting small nicks on my fingers. I ran out of my meloxicam yesterday, and boy do I feel it this morning! Pain woke me up early. Trisha

Hello Trisha,

I have'nt had to wait for it to turn colder my rayanuds as been bad through the summer...keep your hands well creamed Trisha and try and wear some kind of gloves and watch those nicks as they turn into cuts, they happen on my fingers but on the joints and cut down to the bone and they take a good while to heal o be very careful.

Trisha i've been taking an hot water bottle to bed with me and wrapping my hand around it.lol

Hugs Terri xxx

Hello All,

Sorry I missed this discussion yesterday, I miss so much being at work : (

I recall posting something about the frustration of taking so many pills and having to have a pill reminder to keep them all organized when I first came on here. 5 months ago I didn't take anything, now I have a pill minder box like my mother's.

This disease is so unpredictable and different for each of us. My symptoms are not as pronounced as others, but I don't know what the disease has done internally. Its possible that I could have gone my whole life not knowing I was seriously ill. There is alot of adjustments we have to make with this, coping with diagnosis, then it would be bad enough having friends and family tell us "you don't look sick" and also have a doctor that can't make up his or her mind.

Mia, it sounds like your doctors aren't playing well with others, because the rheumy wasn't the one that first diagnosed it, the cardiovascular dr did? That's just my take on it.

Mia, where can we get the personal medical journal you talked about?????? that is so cool!

Hang in there, we are all here together in this.

Love, Trisha

Hi Ann

Yes, its possible that I've had the Raynaud's first, but I didn't know what I didn't know. I never brought it up, or thought is was a problem to any doctor. It was really a good doctor that picked up on what I said at the time. I just wanted to get my foot fixed. I never thought anything other than that. God looks out for me and brings me to the right people for help, just like he brought me here so I could connect with you and all on LWL : )

Love you all, Trisha

Ann A. said:

But Trish it sounds as if you could have gotten the Raynaud's dx first. Physicians do have to take the time to figure out it the Raynaud's is primary or secondary to some disease like lupus or Sjogren's. And how do people feel when they are diagnosed with lupus and then the next physician says, no you don't have lupus. There are a lot of people on LWL who are dealing with too. They have been given the dx and then had it taken away and now they still don't know for sure. Life with Lupus just doesn't come with a lot of quick easy answers.


sunrisetrisha said:

Ann, I think I will be the exception: to thank my doctor for this diagnosis. I have an appt with my GP, who is the one that "the lights came on" when I described my symptoms. I'm sure he saved my life.

Love you all, Trisha