[bluedolphin]

Hey. I am new to this forum and the whole lupus thing. I wanted to see if I could get some feedback from all of you since I am currently awaiting a diagnosis. I have been experiencing extreme fatigue, pain in my muscles, stiffness in my joints, my blood sugar drops when I don't eat, my vision has quickly gotten worse, my blood pressure has shot up quickly (now runs about 154/114 without meds), and just an overall "bad" feeling.

I went to the rhuemy for my first visit. My gp did labwork and I have a positive ANA test of 1:640. I also have a positive anti DNA test, and a positive anti RNP test.

Besides the joint pain, fatigue, and redness on my cheeks (not really a rash), I dont have the other classic symptoms of lupus. He did however say that I have the early onset of a connective tissue diease. He ordered more tests to see if I have inflammation in my body. I know the searches that I have done about these blood tests say that lupus is typically the diagnosis. I just wanted to see if anyone had ever heard of or experienced the same type situation that I am facing.

Please help! I would love to get some input from others.

 

[pennylp]

Hi Blue Dolphin,

Welocme to the site... I know you will get all the information on this that you are looking for.. There are quite a few people that are very well informed with all the technical side of lupus, I am not one... I leave that to my doctors.. Just not my thing... Now as far as the support side of things I am here for anyone... And there is a ton of support from everyone here...
I can relate to all to your symptoms , I had all those symptoms minus the BP... before I was diagnosed with lupus... Of course the BP could be high cause you are in pain and stressed... Have they given you anything for to help with your symptoms, or are they waiting for more tests.? I am sure you will get lots of responses... Again:welcome:

Love Penny

 

[LolaLola]

Hello Blue Dolphin,
First of all I wish you all the best with your Doctors.
You obviously have something going on. Have you also been tested for APS,(sticky blood)?

I hope you get more answers soon.
x Lola

 

[bluedolphin]

Thanks Penny and Lola for your replies. This has probably been one of the hardest things I have ever faced in my life. I so appreciate all the support that I can get and I'll be glad to give some in return.

The doctor drew more blood for a sed rate, TSH, and CPK test. He has not done an APS test. He gave me mobic and flexiril. My gp has me on Lisinopril for the blood pressure and Lortab for the pain.

The part that really gets me the most is the fatigue. Every two weeks I will get so much pain in my back and get extremely fatigued and sleep all day. The next day I am so nauseated (sp.)and tired. Then I have a few better days. I am just praying that I can get some relief for the fatigue. I am having to leave work because I can't make it all day.

Again thank you both for responding and being so caring. I joined another lupus forum and couldn't really get any support for them.

love Tracy

 

[Lily]

Hi Tracy and :welcome:

It certainly sounds as if Lupus is a definite possibility :hug: but once he establishes that for sure he will put you on some disease modifying medication called Plaquenil probably and that should help your fatigue and some of your joint pain, cut down on rashes etc. Trouble is it takes quite a few months to work, but it's very effective and all some people need.

Does he realise that you are so fatigued that you are having to leave work each day because of it? Sometimes just saying we feel tired isn't really enough. Doctors like examples of 'how tired' or 'how much pain' and what it's stopping you doing etc. That gives them a better understanding of your individual case. Someone else might come in and say they are tired meaning they have to take a 1/2 hr nap and then they are right to go!

Normally with those blood results and the fatigue, joint pain and facial rash you would clearly have enough 'criteria' for a diagnosis of Lupus. That is unless there is some underlying cause for the high ANA and Anti-DsDNA. The DsDNA is very specific to Lupus but can occur for a short period of time for other reasons in low figures. So he's probably going to retest that when you see him next. The positive RNP is sometimes present with Lupus or another condition called Mixed Connective Tissue Disease - the latter if it's in very high figures. But the key will be that DsDNA as it's usually a clincher for Lupus. When do you see him next is it soon?

Did anyone test your urine?

I know it's a worrying time for you Tracy, but one thing NOT to do is read anything over 5 yrs old, medication and treatment is advancing all the time. Remember that each and every one of us has a very individual disease. What happens to one won't necessarily be true for another. There are many people out there living their lives and doing well, once their diagnosis was established and they were put on the right meds.

If you have any other queries or you just need an understanding nod or a hug you have come to the right place

love
Lily

 

[bluedolphin]

Hi lily,
I haven't told him about the degree of fatigue. He was actually very short with me the day that I went in. He only asked me the about the classic lupus symptoms and checked my tender points for fibromyalgia, (which he thinks I have also). He didn't give me the chance to tell him about anything else. I think that he was in a hurry because they were running way behind that day and we were cutting into their lunch. I do still have my list that I plan to talk to him about and I will make sure I add that specific detail for him.

I go back to see him on the 20th and if he treats me the same way, I may switch docs. I have an appointment scheduled with another one anyways.

My gp did test my urine but she didn't mention that anything was abnormal with it. The rhuemy is requesting the results from my gp.

I feel sure that I have lupus based on all the results and everything that I have read. Sometimes I pray that it isn't, but I know that I will learn to live with it. It just has been a rough road and I will be glad to get on some medication. I pray that the meds will work and that I will be able to lead more of a normal life than I am now.

I thank the Lord for each of you as I was feeling very disppointed with the other forum that I joined and you all have made me feel very welcome and loved. THANKS!!!!!

love, Tracy

 

[LBH]

Hi Tracy

Hi Tracy! Welcome to the site and I hope you stay with us in here. I just joined and so far everybody has been so wonderful. So sorry that you are having to deal with this type of illness. I hope they can figure out what is going on and that you get well soon. I have CNS lupus and Fibromyalgia. The Fibro gets me down alot. Especially in my hands. Fatigue is also a bad issue with me. Pleasure meeting you in here!

 

[LolaLola]

Dear Tracy,
It would be worth testing for APS (sticky blood) as a number of us have it in addition to Lupus, and if you do have it it could partly explain the BP problems maybe.

If it is Lupus, treatment will help but can be a little slow to find the perfect mix for you. I am better than I was before treatment, and the information and support that I had have really helped me to cope and learn to handle the illness.
I don't know if anyone has said to you but please stay out of the sun or use sun block etc. It can make a big difference, not just to any rash but to all the other symptoms.
x Lola

 

[bluedolphin]

Hey Lola and Lynette,
Thanks for your responses. I will ask him about the APS. He didn't seem like he was connecting the high blood pressure with whatever else I have going on. Although all my other symptoms started around the same time as the blood pressure. All he said was that I needed to lose some weight, duh? I have been trying that and nothing that I do every seems to work. I have always weighed around 120 lbs and in the last two years I have steadily gained about 60 lbs. I have tried different things in order to lose weight but none of them have worked. I have only gained more each time. He suggested that I don't eat any breads, potatoes, pastas, or sugars.

I pray that it doesn't take too long to get some treatment that works and provides some relief. Thank you all for listening and taking the time to read my posts. The support here has been great and you have already done more for me than you will know.

Love, Tracy