Hi! I’m Linda and new to the forum
AnonymousJuly 25, 2008 at 4:04 pm
Hello! My name is Linda and I am new to the forum. I actually joined another forum and an Emma and Terry lead me to this forum and said this is where to find everyone. I guess I can become a regular in here huh? 🙂
I was diagnosed with Systemic Lupus back in 1992. With my lupus I had an unexplained Neuropathy that was really being treated as Lupus symptoms. Made a move several years back and the new doctor told me I no longer had Lupus! Big mistake meeting that man!
Started getting sick and insisted it was Lupus all over again but he refused to listen to me and said my labs were normal. Saw a Neurologist and she started testing me and found me to have a B-12 Positive Intrinsic factor and I now have to have B-12 shots on a monthly basis. They gave me high doses of the B-12 at first and then tapered to once a month. At that time, I started feeling better.
Three months later I got slammed with that nerve damage mess and knew there was a problem. I insisted it was the B-12. Got rechecked and my B-12 levels were fine. So then they found a really really bad Chronic Sensory Motor Axonal Demylinating Polyneuropathy. I was eat up with nerve damage
Still no answers as to what was causing it, but was feeling something aweful! I actually joined this forum last week but was so depressed and had suicidal thoughts in my mind. Was just getting so tired of feeling aweful and tired of being probed by doctors and looking at my records reading their theories.
Let’s just say I have been fed up. After getting two new doctors and I pray they help me and do it soon! Well anyway! To make a long story short, saw the new Rheumatologist and he ordered more labs, the new Neurologist did another EMG. Labs did show something going on but not typical for lupus. Neurologist told me I had CIDP but of an unknown etology.
Since I had a Lupus rash, I decided to get a skin biopsy and it came out Lupus! Hmmm! I have had Lupus all along and the doctors have told me my Lupus was gone! How interesting!
Please say a prayer for me. I looked online some rare factors of Lupus and I think I may have diagnosed my own self without seeing a doctor. In the skn biopsy it reads Necrotizing Vasculitis. Labs are indicating a possible vasculitis or protein loosing gastroenteropathy. Actually I might have both.
I see a gastrologist on Tuesday of this coming week and I guess it will be me have the good old fanny test that I really don’t want to have. But if that test shows positive then, I might just get well after all! Meaning the IVG’s and treatment of pulse steroids. Not going to get my hopes up just yet, but I sure pray my research is what is going on with me. I just don’t know how much longer I can hold out hoping and praying for a miracle.
It’s bad enough having Lupus and getting flares but my flares seem to never show anything positive in labs that help me. They always come back either borderline or showing something totally off the wall, and I don’t get treated for the proper thing which is the nasty nerve damage that is eating me alive!
And it may be another month or two before I get any true answers. I am praying for sooner than later!
Keep your fingers and toes crossed for me! Ohh! Terry and Emma! Thank-you so much! I hope I can be a part of family in here! 😎
AnonymousJuly 25, 2008 at 4:11 pm
Just a quick hello to you and to welcome you to the forum. There are a LOT of very helpful people here who can answer many of your questions, or just be there for support. I hope you will be able to learn quite a bit as I have.
There are also a few others with the B12 issues, as we have had those discussions lately. I dont know how or if they relate to CIDP, but at least others can share their stories.
Are you not getting any treatment right now for your CIDP???? I would think that would be crucial for you. Well, welcome again and browse through the posts here….Take care, Gabrielle
AnonymousJuly 25, 2008 at 4:22 pm
Hi Gabrielle! Pleasure to meet you. No treatment for the nerve damage since 1992. I have been getting treatment for lupus and B12 but the treatment for Lupus stopped 6 years ago and for 6 years I have insisted the B12 or Lupus was eating my nervous system up.
Just recently had spine surgery too and two weeks after that surgery my immune system went haywire! But I was already suffering.
The new doctor wants a nerve biopsy in hope we can figure out what my problem is. After that biopsy I hope they can treat me.
I feel like I am dying a slow death! So praying that I finally have the answers all along. I am very medically knowledable on some things but there are so many diseases out there and I have been a diagnostic challenge. Thanks for sharing with me!
AnonymousJuly 25, 2008 at 5:49 pm
Welcome welcome Linda-I have been watching for you and glad you finally got here. Gabrielle is right, a lot of people doing B12 injections. Most of our frustration lies in getting the right diagnosis and getting the treatment that we need. I hope you can start with the ivig soon, or some steroids and even meds out there to help with the nerve pain, ie Neurontin or Lyrica. Hang in there-there are so many helpful people here and so much you can read and learn from others. I also enjoy ” On the Lighter Side” to take a break from all the heavy issues. The Main Forum gets read the most and then I would think CIDP for you, so don’t be afraid to ask any questions and vent anytime you want…….take care Linda. Glad you are here.
AnonymousJuly 25, 2008 at 11:06 pm
Welcome to the forums! While I’m relatively new, too I’m more than happy to help you in any way I can with support or questions. I’m learning so much about CIDP. The people on here are great about sharing information and helping everyone. It’s a wonderful place. I’m glad you were directed here 🙂
AnonymousJuly 26, 2008 at 12:15 am
Hi Linda, Welcome to The Family!!!! Hope to see ya in the Tavern(on the main forum);)
You’ll fit right in here, there are alot of us who are unique or a challenge!
and some who have Lupus also. I’m one of the unique ones:D still no for sure dx, but am working with a great neuro to find one.
Keep in mind, the organs are controlled by nerves also, sometimes they go haywire and its hard to get to the root of that problem or to correct that problem. I’ve been trying that path for many years myself, its rather frustrating at times. Just know you are among friends here and feel free to vent or ask questions anytime!! Take care!
AnonymousJuly 26, 2008 at 1:45 am
Hi & welcome.
It sounds like you’ve been through a lot. I hope the new dr’s can figure out exactly what is going on.
I’m always suspicious when someone mentions that they have a rash along with muscle weakness & nerve pain. There is a disease called myositis that comes to mind. Have the dr’s thought about that?
Here is a link to The Myositis Association, if you want to check it out.
How long ago was your last IVIG treatment? If it was within 3 (or so) months of the blood tests being taken then those blood tests might come back with a false positive for Lupus.
My daughter Emily had the Lupus test done after receiving IVIG for about a year. It came back as borderline positive. She clearly does not have Lupus though.
PS, A very large percentage of people with CIDP get the result back of “CIDP with unknown etiology”. Most of us are not lucky enough to pin point what exactly caused the disease…unless it was directly after getting a vaccine.
AnonymousJuly 26, 2008 at 10:06 am
Welcome Linda…..every case of GBS or CIDP is so different…but we all go thru similar things like depression, frustration, struggle, fatigue. It is a slow process for most to recover to a point you can deal with. We do understand and are here for support. Usually we all have gone thru the process of eliminations before we get a diagnosis. Mine started in the ER with a diagnosis of MS…..days later I was on life support. I was lucky to have a team that worked together and was intouch with other teams from other hospitals. Thru their determination they were quick in a diagnosis and started me on the IVIG but that did not seem to work to stop the attack to the mylin sheath so they started me on the PP. 9 weeks in the ICU and rehab I am doing well. I am not by any means back to 100% but I do have my home life back and each Summer I am able to do more and more! I hope a diagnosis comes swiftly to you and you are able to get back to a point where you feel educated and are able to listen to your body and know when you are ready for another round of IVIG or steriods to less complicate your life. Hang in there! Try the geographic game they do here it can be entered when you have time to contribute a post and followed to give you some ideas of where you have been and where you have yet to go! Terriffic gang here! Welcome to our family. Hugs for your caregivers too they have to be frustrated too!
AnonymousJuly 26, 2008 at 3:03 pm
Linda—welcome, welcome! There are great people here willing and ready to help you with any question you may have. There are often no pat answers but just knowing others understand can help each of us get through those challenges without losing our minds!! Take care and ask away!
AnonymousJuly 27, 2008 at 9:30 am
Thank-you all so very much for the warm welcome here! I am looking forward to posting more often and it seems like a very nice group of people in here. Right now my doctors have not started me IVIG therapy just yet. We did get a positive skin biopsy of Lupus and they want to get another nerve biopsy to see just if it will give me some answers since my other nerve biopsy in the 90’s came out only giving neuropathy with no answers. But I was in the beginning of my disease process at that time.
My regular doctor has placed me on a low dose of steriods in hopes this eases up some, but the steriods really just are not enough. This morning because of the heat I felt something aweful. I was placed on pulse steriods years back but have never been on IVIG therapy and really don’t know what it is or what to expect.
I sure hope they start soon, for I see myself getting sicker and sicker and it’s tough trying to deal with it!
But thank-you for all the support you have given me! It’s going to take me a few days learning how to figure out the site, but I will catch on quickly. At least I still have my brain! 😀 Thank goodness for that!
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