View Full Version : 10 Year Anniversary - Has it Been Lupus All Along???

Malli D
05-17-2013, 09:25 PM
Greetings WHL Family,

My name is Malli, and yesterday marked the ten year anniversary of the day that my life forever changed...The back and leg pain had begun earlier that week (I was away from the office in a training class...silly me...I thought it was the chair). That morning, May 16, 2003, I sneezed in the hallway while getting myself and the kids ready for the day and it felt as if my spine had snapped and I fell to the ground. Life has never been the same since…

The next several months as I struggled with excruciating leg and back pain, I was filtered through every test to rule out the simplest to the worst of possibilities…by Autumn they called it Fibromyalgia and had me doped up on so much medication, that sadly I was not very "present" in my sons' lives in those months (a commitment that I later made once I learned how to adapt to THIS new normal). Struggling to make it to work, and provide as a single mom with two young sons in elementary school…and not absolutely lose my mind...because it feels like, I could walk yesterday….and now my legs don't want to work!!! What is happening to me?!?!?! I wanted to choke the doctor with the fibromyalgia dx, I really did...because I didn't believe it. I felt like you don't have a clue so you're just saying something so you can give me a prescription and I'll leave….and that's what happened.

Then it was February...and I started to go blind…My vision would grey out from time to time. But I'm a squeaky wheel kinda girl (that's really coming back to bite me in the butt right now). My eyes didn't hurt...so I didn't pay that much attention to them...I didn't realize I was going blind, until February...when they continued to grey out...AND began to hurt badly...then I went to the ophthalmologist and discovered that I had papilledema (swelling of the optic nerves). I had to go straight from there to get an MRI to be certain I didn't have a brain tumor...which I didn't...the ophthalmologist lacked all types of finesse in communicating to me why I needed to go right away...he pretty much told me I could either have intracranial hypertension which is pseudotumor cerebri which acts like a brain tumor taking up space in the brain, or I could have an actual brain tumor.

I have Intracranial Hypertension (IH)...they confirmed it with a lumbar puncture - my opening pressure was 40mm (normal is 7-15mm). They tried to stabilize my condition medicinally, and get the papilledema under control, but it was unsuccessful. At the end of March 2004 I had and emergent VP Shunt placed at Johns Hopkins hospital in an effort to save my vision and prevent any further damage to my optic nerves. I've had four additional shunt related surgeries ...as shunts are just really good bandages...that ultimately need to be changed after a time. And my body doesn't seem to like them very much. Also it seems that my body is extra weak and collapses...and ….well….I'll talk more about that…

So...once I found out that I had IH, I tossed Fibro out the window, because I was thinking what's the chance of a perfectly healthy, softball/racquetball -league active mom with no illness, coming down with TWO chronic illnesses with no cures, overnight at the same time?? That's completely illogical, right!??!

Then symptoms were coming up that my neurologists were saying didn't fit with neuro numbers, but, I'm a little hardheaded...and didn't want to consider that it could be anything but neurologically related...it took a while for me to realize that perhaps something else could be wrong…I have a dear sister in Christ with Lupus, and we share way, way...way too much in common…By 2006 I started to consistently have elevated sed rate and c-protein levels always….and they still are elevated today. Neuros haven't been that concerned because I have a medical device in my brain...it could be that it could this….they don't really care...as long as my brain is okay and no other numbers that they look at are hinky. I decided it was time to go back to the Rheumatologist…long story short...at that time he declared me Lupus free...and said I had Fibromyalgia and tried me on various meds...over the years...nothing has ever really worked for my flares...for "fibromyalgia". NOTHING…

Fast forward to present time... in February I had to go to Maryland to have surgery again...my shunt needed to be replaced, but when my surgeon got the blood work my aptt was elevated, so he delayed the surgery. Two weeks later it was still elevated. He did a temporary surgery to stabilize me, and told me to get to a hematologist. The hematologist determined that I am anemic, with all the blood oxygen issues that go along with that… and I shared with her my Lupus concerns…She agreed and sent me to a rheumatologist.

I know one thing plus another thing plus another thing plus another thing plus another thing over a period of time eventually adds up to being Lupus...well my things are really adding up...in fact...it seems as if it was Lupus to begin with.

You see Intracranial Hypertension presents with Headache as its primary symptom. Headache was my very last symptom. I started with back and leg pain, and then six months later I started to have visual disturbances. It wasn't until February of 2004 that I started to have headaches...nearly nine months after the initial onset of symptoms. So I sat down with my new rheumatologist here in my new home in Pensacola, Florida...she's a lovely, kind lady…and I told her how scared I am that back and leg pain + neurological disorder + elevated ESR & c-protein + chest pain (3 ER visits) + foot pain + nausea & vomiting + flares + gastrointestinal issues (major) + anemia + elevated aptt w/o a bleeding issue + overwhelming fatigue + pain + suppressed immune system (and I'm leaving some tuff out I'm sure) is all adding up to Lupus...Dr. Harris was wonderful. She asked me a thousand questions, and took detailed notes...listened intently...and then explained that as I knew Lupus is evolutionary…after she examined me she didn't think I had Fibro...she said it felt and sounded like my issues were more "joint" related. She said we would start at the beginning...she wanted to look at all the auto-immune disorders...with Lupus you deal with symptoms...she did my labs and we meet again on Tuesday…

I have two sons...my eldest is 20...he is in school and here helping take care of me and is solid as a rock...He my Barnabas...my encourager!!! My youngest is 18, and just finished his freshman year...He is not taking the idea that I may have had Lupus all along very well, at all...not at all...That's why I waited for the end of the school year to tell him...I know my melancholy baby :-)…My eldest son told me...Mom, we've already been doing this for ten years…it's nothing new...it's just a different name...I needed that!!!

Anyway….I look forward to knowing each you and sharing in your lives….

05-19-2013, 06:36 AM
The last sentence is so... I simply can't find the words... I just break out to tears... It's so touching...
I hope you will be alright and I wish you all the best in the future !

Malli D
05-20-2013, 05:37 AM
Thank you, Simona! Just one more day until my appointment...I've never wanted to go to the doctor so bad in my life! I just need need to hear what she has to say conclusively, so that we can began to move in one direction or the other.

05-21-2013, 10:20 AM
WOW! You have been through quite an ordeal for many years. I am glad that you now have a rheumatologist who listens, believes you, and is willing to do what is necessary to treat you and your symptoms. You seem to be knowledgeable about all of your symptoms and of Lupus. That is great because, as you did, it enables you to have an informed conversation with your doctor so that the two of you can work in tandem to treat your symptoms.
I am glad that you are here and please know that we are here to help you in any way that we can. I wish you the very best.

Peace and Blessings

05-21-2013, 10:45 AM
Hi malli,
Your story is so sad and tragic I feel so bad for you. I'm coming up for my 23rd anniversary of being ill this year and tho sometimes to me life seems so so hard, I've never been as ill as you. God keeps telling me that there is a plan. There is always a plan and we can hang onto that truth no matter who we are, where we are or whatever happens.
Your sons sound lovely. I too have kids and they support me no matter what stage I am at. What your eldest son said is so similar to what my DH says to me, but putting a name to it also creates a little map of lines around you leading to all sorts of eventualities that you might not really have looked at before (or have but didn't feel you needed to panic since you didn't even have a name for it yet and surely without a diagnosis you can't have some of those horrible things, right?!)
The bottom line for me...at the bottom of every panic attack and every sick feeling inside when I look at all my possibilities...is that God loves me. He has a plan for me, He knows me...nothing can get in the way of that. Sometimes that's all I hang onto when everything else just drags me into despair. There is a plan....

Take heart. Sending encouraging vibes!.....