Is it Lupus or what?

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petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 10:04 AM (GMT -7)   
I am 47 a diabetic who was diagnosed with diabetic neuropathy 2 years ago they have tried all sorts of medicines with me but as time goes by the pain has progressed . I am bi-polar as well so some of the meds I am taking for a dual purpose. I have extreme pain in my legs, feet, hips. I was just informed yesterday that I have a positive ANA and that they are sending me to a rheumatologist for further testing.I have trouble sleeping and have suffered many falls in the last year fortunately no injuries.Last month I spent 5 days in the hospital due to chest pain they did all kinds of heart tests and my heart checked out just fine...yea!

Thanks ,

Sheryl

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/19/2007 11:02 AM (GMT -7)   
Go to the top posting, lupus resources and you will find a link to possible symptoms which you can compare to your own.  Lupus is the disease with a 1000 faces and can be difficult to get a clinical diagnosis.
 
You mentioned falling.  Do you have any significant muscle weakness?  Difficulty getting up and down from chairs, toilets, climbing stairs, raising your hands overhead, or swallowing? 
 
Make sure you write down all your symptoms, no matter how insignificant they seem to you.  Also write out your questions for the doctor.  All of this can be quite intimidating and you can easily overlook something that could be important.  I keep a health log in a spreadsheet with all sorts of pertinent information.  No way I could ever remember it all.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (7mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 2:45 PM (GMT -7)   
Thanks Bill for responding...You asked about significant muscle weakness yes I do...the advice of keeping a log is an excellent idea.... There are so many things to remember and not sure how long before I actually get an appt with rheumotologist..Right now I am feeling pretty sad and hopeless and would love any input anyone has I am a new member...

God Bless you all,

Sheryl

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/19/2007 3:08 PM (GMT -7)   
Hi Sheryl:

First off welcome to our forum. I'm glad to see that Bill responded to your question. He has provided you with a lot of good advice.

I saw your post, just before I was getting ready to log off. I wanted to pass on a word of encouragement to you. First I'm sorry you're having such a hard time with pain. It's the pits and it's horrible to deal with. I hope that your doctors can come up with a treatment plan for you.

I know that you're sad and hopeless right now, but try to remain positive here. Like Bill said, Lupus has 1000 faces and can be difficult to DX. Look over the criteria that you have to have to get a DX of lupus. Just because you've got a positive ANA, it DOES NOT, mean you've got lupus. People who are totally healthy can have a positive ANA because of other various issues. My daughter is 14 1/2 yrs old and has a positive ANA of 1:640. She's had this lab positive since she was 5 yrs old, she doesn't have lupus at all. I worry about her, but the Peds Rheumy assured me that every year that passes and she doesn't develop other symptoms is a good thing.

So try to focus on your spread sheet, read up on lupus, so you'll know what questions to ask. Know that we're here for you and please let us know if we can help in anyway.

Again welcome and I hope you feel better really soon.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 3:21 PM (GMT -7)   
Thank you Barbara! for your very kind reply...I am going to go rest for awhile am having alot of pain today....but just wanted to acknowledge your reply I will check the diagnosis info out

God Bless you,

Sheryl

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 6/19/2007 3:29 PM (GMT -7)   
petuniablue said...
Thanks Bill for responding...You asked about significant muscle weakness yes I do...the advice of keeping a log is an excellent idea.... There are so many things to remember and not sure how long before I actually get an appt with rheumotologist..Right now I am feeling pretty sad and hopeless and would love any input anyone has I am a new member...

God Bless you all,

Sheryl
Sheryl,
Would you answer yes to any of the specific questions about muscle weakness?  If so, there is a possiblity that you have a myositis disease.  Lupus can also cause muscle weakness but myositis (that is a category for several types of inflammatory muscle diseases) has some telltale symptoms.  You can also have an overlapping connective tissue disease which includes lupus.  I have mixed connective tissue disease which is lupus, scleroderma and polymyositis. 
I know you must be worried but diagnosing what you have can be challenging so finding an experienced doctor is important.  Get a second opinion if you are not satisfied or unsure.  Most of us have done that.
Early diagnosis and aggressive treatment are important and make controlling whatever you have, if it is an auto immune disease, less of a challenge. 
It is easy to say but you should gather all the information you have on your symptoms and medical history.  My disease is very rare but it was diagnosed within a few months of the first flare.  It was also an extreme case....off the charts but I have recovered remarkably and live a fairly normal but less active life.  Most AI diseases are treatable and many can live a normal life.  I am a good example of how bad you can get and how you can still recover and return to function and even some fun.
Every case of auto immune disease is different in their manifestation and severity.  That is why diagnosis and treatment is sometimes so difficult.  Coming to a forum like this is a good first step.  Someone has probably experienced what you are and can help.
If you do have a myositis disease there are a couple of other forums that are excellent.  Depending on where you live there are often local lupus support groups.  I am going to a meeting tomorrow night.  Many of the attendees will have lupus and even other AI diseases.  Check out the www.lupus.org site for locations.  The Myositis Assn also have local support groups but not as many as these diseases are much rarer.  The forum is very active and good.
Sorry you are having problems and hope you can get a diagnosis and treatment soon.  Get an appointment with a rheumy as soon as you can.
 
Bill

Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
 
Meds: prednisone (7mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/19/2007 6:03 PM (GMT -7)   
Hi Sheryl, I also wanted to welcome you. I can understand why you are feeling sad and worried about all of this - it can be overwhelming. Also, if you didn't see it already, there is also a topic in the "Lupus Resource" section that contains tips for new members and it can be very helpful. I hope you can get into the rheumatologist soon and that you get a very good doctor. It can take a while to get a diagnosis because lupus symptoms can be so vague and are present in so many diseases.

I'm glad you found this forum, it is a great place full of very supportive people. Please ask any questions you have and also know we are here for you if you are having a rough day and need support.

Take care and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 6:08 PM (GMT -7)   
Bill,

Thank You so much for all the information....I will do some research and I will be prepared for the Dr when I get my appt...Thank you so much for sharing your story it helps to know people are finding ways to live useful lives and that maybe my severe pain will not last forever....

bye for now,

Sheryl

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/19/2007 9:05 PM (GMT -7)   
Hi Sheryl,

I wanted to add my welcome to you as well. Bill has given you some great information. Most of my pain is upper body but I do have neuropathy as well which affects my hips, legs, feet, and toes. Its amazing what this does to us and the many ways it can present itself. Lupus is really hard to diagnose (I still am not diagnosed yet) because so many things can cause the different symptoms. The only way my doc pinpointed it down between or both Lupus and Sjogren's is my antibodies. Your rheumy will most likely test for the individual antibodies. Docs will usually do this when your ANA is positive. Good luck with your appt. and please keep posting and keep us updated.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


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petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 10:40 PM (GMT -7)   
Thank you Des for responding to my post I have gained a wealth of info in just 1 day thank you to all of you for helping to ease my hopelessness...I know I have a long road ahead of me but am beginning to build some tools to help me get by....

I am still overwhelmed but trying to take it one day at a time.....My husband is a recovering alcoholic and the stress of the last few years especially the last few months it has been difficult I am trying to incorporate what I have learned in al-a-non to my health as well...as I am looking back over the past few years I see so many unexplained symptoms add them together and they make so much sense....my short term memory is effected as well.It is so hard to see the changes in my life.I do not seem to be the person I used to be living with chronic pain is a tremendous burden.

Again thanks to all of you. I really need your support in my journey.

God Bless,

Sheryl

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/19/2007 10:49 PM (GMT -7)   
Hi Sheryl, and a great big welcome from me too. I'm so sorry you're having such a tough time right now. Just having to deal with an undiagnosed disease is enough to make anyone crazy, but you have so much more going on in your life. You surely know first hand the benefits of a support group since you go to al-a-non.

I hope you'll find many of those benefits here. Do feel free to let it all out, expecially during times like this when you're feeling so extraordinarilly overwhelmed. We may not all have the same exact illnesses, but we do understand each other. We all deal with a chronic illness and we've all been through the doctor mill trying to find the perfect match for each of us.

Good luck in getting the proper diagnosis. You've gotten some terrific advice here, and hopefully made some new friends.

I hope to see you back here real soon.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin


petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/19/2007 10:59 PM (GMT -7)   
Thank you Pat for your kind words I can already tell there are some wonderful people on this forum thank you for welcoming me into the fold...Good night to all my pain meds are making me drowsy so off to sleep I go

God bless you all,

Sheryl

petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/25/2007 10:13 AM (GMT -7)   
Hello everyone,

I can't wait to see the rheumy and get the ball rolling after 3 years almost of constant pain, with diabetic neuropathy. The pain is getting worse and new symptoms arising all the time used to be the pain was mostly in my feet and calves but now it is in my hips , low back, shoulders and hands are getting weak.I am having trouble with stomach and bowels as well. I am having more trouble getting up and down out of chairs , etc...My husband tries to be supportive sometimes too supportive wants to do everything for me but I have to keep moving as much as possible.

We should get his results this week from his prostrate biopsy.I am praying that it isn't cancerous his health hasn't been the greatest in 2006 he had a doulbe heart bypass and right now he is 6 weeks without a cigarette and almost 30 days with out alcohol I am very proud of him.

I am having a lot of severe pain today I woke up in tears so I loaded up on on pain pills....ate some food and now am feeling a little better


Well I hope you are all doing well I appreciate you all letting me rant and rave and all the positive input....


God Bless you all,

Sheryl
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