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kukukajoo
02-07-2009, 12:55 PM
Greetings! I am so glad I have found you all as I have felt pretty alone lately and having a hard time understanding all I have been going thru.

A brief introduction- I live in NH and just turned 40 and apparently fell apart the same week! I recently graduated nursing school and became an RN.

For years various docs have thought I had Lupus on and off but I have always tested seronegative which was puzzling. Today there are more tests and more known which is leaning towards a dx of lupus for me.

I have been through a PE at age 29 which nearly killed me, flares of sx prior to periods, have kidney trouble, migraines, muscle and joint pain, seizures, red palms, etc. etc. etc. etc. ALL signs that would point to lupus.

Well fast forward to now. Having had serious neurological symptoms I had to leave my job as I had just begun and not eligible for leave or protected by FMLA. Could not even get a sick day. I was doing horrible anyhow due to symptoms, it was like watching a slow train wreck I could not stop. Having graduated with honors despite being a single working mom, all I had worked so hard for was falling thru my fingers. My emotions were/are not what they usually are- I am all over the map on that, not the stoic woman I usually am!

This most recent bout is second in several months (last one followed my grams death- I was her caregiver and very close). My MD (actually an ARNP) puts me on Topamax for migraines which increased my symptoms 20 fold. After this, I finally go to a neurologist.

This neurologist reminds me of House on TV! Without the crassness. He is very thorough and I am so very thankful. I like his attitude and his communication skills are top notch and he is willing to work and research for an answer.

I was diagnosed with Lyme but have three MDs arguing whether it is positive or not... A whole other issue! In the interim I am doing treatment for it as it cant hurt and may help. I was diagnosed in 2005 with Valley Fever (Coccidiomycosis) having positivve titers, but sent blood to UC Davis lab who said they were false positive. All they do is VF testing and research and their tests are the gold standard. So it was not VF. Is the lyme also false positive I wonder?

Anyhow, neurologist was aghast that after my PE that nobody ever looked into clotting or other blood disorders. Off I go for 15 vials of blood and even more tests!

Now many are coming back normal or negative and there are so many of them. I tested positive and very high for antibodies to some clotting antigens and he called yesterday and said start an aspirin a day and wants me to go to Dartmouth to see a rheumatalogist, hematologist and toxicologist. He has one in mind for me to see.

He starts telling me that he does not have all the answers as his specialty is neuro but many with lupus have this and are sero negative so he is leaning towards Lupus at this time. He says they (dartmouth) will make a determination based on medical history and labs, but it more and more it sounds like I have found an answer. He just wants to make sure I never have another PE he says! I think he may have honestly just saved my life! I will be probably put on coumadin which I am not fond of, but will if I have to.

I have had problems since I was a teen and hoping this will finally come to an answer. Before, the MDs were seeing the negative ANA and saying nope it isn't lupus and not looking any further which I am certain many of you can relate to!

Although this is long, it really is the truncated version! I am grateful to find this site and would welcome friendship and information as I go thru the next few months of unknowns.

I am also considering going to Mayo Clinic in FL as they seem to specialize in Lupus. Or maybe the Lupus Center in Pittsburg. I just don't know yet. Has anyone gone to either for proper diagnosis/exclusion?

TobyJug
02-07-2009, 02:23 PM
just thought I say welcome...

Angel Oliver
02-07-2009, 03:06 PM
Hello and welcome,

Glad you found this site cause there are many lovely people with the knowledge you need.I dont have so much knowledge but recently i was told it was Lupus. I have found out though or told its actually M.E. I too had a P.E so OUCH i know that pain and dont want a repeat any time soon. Whether i stay as having M.E or that diagnosis is changed is anyones guess (Angel chuckles at the doctors) but i hope not....it gets a bit frustrating after a bit. I so hope someone comes along soon and gives you the input you need and im sure they will. Lovely bunch of people here......so welcome and i hope you feel a little better knowing we all understand.

Love
Angel.xxx

lmangusrn
02-07-2009, 06:53 PM
Welcome!! Gald you found this place. I recently found it myself, what a blessing. It's nice to know that there are others out there who are going through the same thing and understand. I am a nurse also but have the fortune to work from home. It's been a blessing. Let me know if I can help in anyway and if you need to talk. We're all here for each other and that is something I love. :P

kukukajoo
02-07-2009, 08:49 PM
thanks everyone! What I was definately diagnosed with yesterday was antiphospholipid syndrome, aka Hughes syndrome. Evidently it goes hand in hand with lupus and a key factor to being diagnosed as seronegative.

I have been having livedo reticularis for years without knowing it was abnormal as it always flares when I am cold.

I have been making a list of my med history, symptoms, family hx, and meds I am taking as well as list of where I have to get copies of records from to take to the specialists I will be seeing.

I am hoping all this can be done before my insurance runs out....

What type of work can you do at home? I am afraid if on immunosuppresives can I even work on a regular floor? I was doing OR nursing (circulator) but neuro sx got really bad and it was pathetic. from what I am reading possible TIAs are causing this.

I am happy to hear how blessed everyone is on here, as I have felt so alone lately and worse to come I am sure. Been pretty emotional lately and wishing I wasn't single and worried about the future and hoping this does not ruin me, but determined to not let it!

lmangusrn
02-07-2009, 09:35 PM
I have sent you a personal message regarding my story and my work. You are not alone and have support from a lot of great people here.

sits_inthe_corner
02-08-2009, 03:19 AM
Welcome to the board kukukajoo

My mother had lupus, my sister is diagnosed as well. I've had problems since I was in my late teens but still no diagnosis here. Blood work is all over the place and I have a rhuemy who doesn't put much stalk in lupus, she thinks it's a catch all that doctor's use when they dont know what's really wrong with you.

By the way she doesn't seem to know what really wrong either :lol:

It's difficult to switch doctor's here, I'm on several waiting lists.

My mother worked, my sister is working and so am I. There are days I wish I weren't working but I guess it's a reason to get up and get moving which I find really does help.

Mostly it depends on how your lupus is presenting.

For me, I have joint issues, fatigue, headaches that last three days and cant be shushed with medications. I also have malar rash, butterfly rash, IBS, and other goodies.

I'm functioning quite well now that the plaquenil and arthrotec 75 have kicked in. Plus I work out every day.

When I say I work out...trust me it's gentle, mostly to get my joints moving.

Glad you found us. Hope you find the support and information you need. This is a great group of people. :)

rob
02-08-2009, 03:44 AM
Hello kukukajoo,

My name is Rob, and I just turned 41. I was diagnosed with SLE five years ago. I just live up the road a bit from you in Maine. I live on the Penobscot Bay near Searsport. I know how you feel about so many things you've worked hard for slipping through your fingers. I worked for years building my own business, and had finally become reasonably successful when I had the rug pulled out from under me. Was due to marry my fiancee and that went south as well. I had to go on full disability, and basically start my life over. So far so good on that front.

There are so many people like you who are stuck in diagnostic limbo. It was actually a relief when I finally got my diagnosis. It can be a real emotional rollercoaster. Anyway, I just wanted to say hello, and welcome you to our group. Make yourself at home.

Rob

kukukajoo
02-08-2009, 06:51 AM
Rob we are going to have to get together when it gets a bit warmer out!! yep, I am a fair weather friend for sure and shameless about it!

It IS a huge relief to get a diagnosis. Having had lupus come up as a possible culprit for so many years so many times and just my symptoms and accompanying ailments are really classic textbook. Just that darned negative ANA was always always throwing people off. Knowing now that I have this APS is a good thing, as it is making the puzzle picture clearer and I don't think the MDs can argue anymore that the negative ANA means no lupus. I just want to get treated properly and better, get rid of the pain and have my spunk and energy back!

Where do you go for treatment and where? Are the MDs good about letting you participate in care ie making suggestions, not wanting to take steriods and trying different approaches but being versed enough to treat you well?

I am sorry your life has changed so much and have to say if the finacee could not endure that you are so lucky to have found out now even though it must have been painful to go through. Besides I have seen your pics, and with or without lupus you look like a good catch!


I will reassess my job situation soon and I think I will be able to work at least part time. It is easier to make it thru a grueling day of work if you know you can drop the next day and sleep all day if needed, which with me is needed lately. I just gotta get rid of the pesky neurological symptoms.

Well I gotta run, have tons of reading to do on this site and others. Then finally I think I have the energy to clean my house (at least some of it!) , it is beginning to develop a funny odor from dirty dishes in my room! I hate to admit but if someone came in my house at this very moment, they would not be thinking very well of me! If a friend popped by unannounced at this moment, I would die of a heart attack and embarassment!

kukukajoo
02-08-2009, 07:01 AM
Sits in the corner, I think you already know this but you REALLY need to switch docs for sure! Have they bothered to test you for anything else like the APS that I have?

You just need to RUN far far away and get someone who understands and is willing to help you solve the mystery. I have had a MD nearly kill me 11 yrs ago when he sent me home from ER with a full lung hemmorage from a PE and I nearly died that nite. Told me it was pleuirusy the jerk! Then back then never tried to figure out why a healthy 29 year old not on birth control never tested me for lupus or anything else to find out why it happened.

I have learned that MDs are not gods. Some are great and will admit their lack of knowledge. Some will truly listen to a patient (the good ones) and others just have been hardened somehow and really need some help getting back to what being an MD is all about.

So if this jerk cant listen to you, is so narrow to not believe in Lupus and just not treating you well he/she needs to go to for more training!

Okay, I am off my soapbox now. Sorry. Just so sick of MDs not doing their jobs and in the process harming patients.

KathyW1958
02-08-2009, 07:38 AM
Hi kukukajoo,

Welcome to the site. My name is Kathy. I am 50 and have SLE Lupus and several other auto-immune disorders. I have had Lupus nearly all of my life, but did not get diagnosed until I was 36. I had a hard time getting the doctors to listen to me for years that is until I got the chickenpox and the my health went right downhill on a slippery slope at warp speed and I nearly died. It was not until the Lupus started attacking my heart muscle and my lungs in a very negative way that I finally got diagnosed and put on serious medicartions. I have been taking Plaquenil, Sulidac, and Imuran for years. It is hard sometimes to get a diagnoses if you are seonegative as I was for years. I think everyone that is seronegative eventually crosses over to sero-positive especially if other Auto-immunes come on in and present themselves as well.

I can not see why you can not work on a regular ward while you are on Immunosuppressive drugs. Just observe proper handwashing technigues and try to avoid direct contact with folks that are sneezing and coughing and you should be ok.

I hope that you keep posting and keep us up to date as to what is happening with you. We all care for and about you.

Hugs,
Kathy

rob
02-08-2009, 07:48 AM
Hi Krissy,

I'd love to get together once the white stuff goes away! We've had a rather brutal winter up here, and I'm sure you've had the same. About my Dr. and other specialists, I have an excellent GP, who was not very familiar with Lupus, but he cracked open his books and has become very well versed. How often do you have a Dr. tell you that he does not know much about a subject, but will learn in order to better help a patient. Too bad they all can't be like that. I have an OK neurologist, and I do not have a rheumotologist right now. I had a new one last year, and it was a disaster ending with me verbally shredding the quack in front of an entire office full of people. My neuro referred me to a rheumo in Portland, but he moved to Florida. So, I'm still searching.

I know that I'm far better off without the former fiancee. It's been 4 years since she left, so the majority of the pain over her is pretty much gone. I feel some anger at times for things that were said, and done, otherwise she's irrelevant. BTW, thanks for the compliment on my pictures.

I know what you mean about having a less than tidy house. I keep my place as clean as I can get it, but there are some days where fatigue keeps me from my various chores.

You mentioned that you had a PE a few years ago. Are you talking about a pulmonary embolism? If so, you are very lucky to be alive. I remember a few years back that reporter David Bloom, who was imbedded with an Army unit in Iraq had a PE/lung problem and he died right there and then. I think he was only in his early 40's. Bad stuff. Well, it's time to go do some cleaning, as I'm not feeling too bad today. Hope you have a good Sunday. Talk to you later.

Rob

sits_inthe_corner
02-08-2009, 07:58 AM
kukukajoo :lol:

We all have our turns on the soap box. I am on waiting lists for another rhuemy, and in the mean time I'm on plaquenil and arthrotec75. I am enjoying alot of improvement since being on these medication.

Spanglishqueen
02-08-2009, 09:30 AM
Hello Ku,

I live in Southern NH and I have been dealing with symptoms for a little over a year due to where I used to work my Doctors where in Worcester now I work in NH again so I'm looking into closer docs. I researched the best Rheumy Hospitals and Doctors in the area and found out Brigham and Women's in Boston is top 7 in the US and found a top 10 Dr that works there and her specialty is Lupus I am seeing her tomorrow for 2nd opinion. So if you wanna travel a few hours check out what your insurance covers and try those. I will post tomorrow after the appointment and let everyone know how it went.

kukukajoo
02-08-2009, 09:51 AM
Spanglish, can you share the MDs name and your experience tomorrow? I have Harvard Pilgrim insurance so I am sure they take it. B&W is not too far at all for me to drive at all for answers and excellent treatment.

Rob, I had the PE when I was barely 29 and now I am 40. It did nearly kill me and I tell you with the MDs I had then it is a miracle I survived. My lungs continued to bleed for some time afterwards but the docs had no idea what it was. They sent me home from the hospital saying it was pleurisy at like 915 pm, I was coughing up blood at that point and having difficulty breathing and lots of pain, so much pain. . about 130 am I had a dream my mother (who was dead) was waking me up. She was telling me to get up, that I had to wake up. That the kids still needed me and get up. Wake up, etc. She just kept telling me this for several minutes and I finally woke up and was in trouble bad!! I had blood almost pouring from my mouth and could not catch my breath to save my life. Just lifting my arm took as much energy and felt like running a mile sprint, leaving more short of breath and almost passing out. I will never forget that feeling of just the tiniest movement taking all my energy out of me.

I tried to get up to see what time it was and just leaning over on the couch took the wind out of me and I kept going in and out of consciousness. I could not get up to save my life. By some miracle I had fallen asleep with the phone on the coffee table. It took all I could do to get it and dial 911 even though it was right in front of me. Another thing- somehow BOTH doors to the house were unlocked and I know they had been locked as at that point we had an angry ex-tenant sort of stalking us and I was home alone with kids as then hubby was in VA on a job.

I still think it was my mom really there telling me to get up. I can't even explain it, but she wasn't taking no for an answer and I am thankful for that.

recovery took forever and to this day I still am not where I was before. Later on I went to Boston for docs and that is the one of the times they suspected Lupus for sure as I was also having kidney trouble at same time. I should have pressed them to keep looking for an answer.

I have to say, I am a little scared as I have been having this chest pain lately and wonder if it is cardiac.

Angel Oliver
02-08-2009, 09:58 AM
Hi,

Wow what a story. I too had a Pulmernary Embolism at 28 and like you they said it was pleurisy. Before that they said i had pulled a muscle and gave me cream to rub on my shoulder blade....but as my breathing gt shallower and i was in such pain...they rushed me to hospital.Oh it was awful. Im so glad you made it through and hope you feel pain free from it now. It took along time for the scratchy pain to go.I sometimes feel it, but the docs say its the scaring. I would'nt mind but i had pain in my leg the week before and very bad cramp and my leg swelled. And no wonder we are so untrusting at times lol.

Love
Angel.xx

kukukajoo
02-08-2009, 10:12 AM
Were you diagnosed before or after that incident?

I know the pain you describe very well. Had one doc tell me it can't be my lungs since lungs have no pain receptors. I told him that damn it mine sure do!

Even in 2006 I have a cavitating cyst in my left lung and it was very painful. Again they said it could not be the lung for same reason but were pretty sheepish when they came back to admit me after the CT scan!

I have residual pain and flares just before and during my menses, including coughing of blood sometimes. They thought it was all caused by pulmonary end ometriosis which is really rare and I would have been the first case ever to have left sided pulm endo without having it anywhere else in my body (they did an exploratory lap to look in my belly).

I am still really scared of having another, and tell all my friends & family if it does happen- DRIVE me to Mass- either Lahey or any hospital in Boston and do not stop at any hospital in NH.

Spanglishqueen
02-08-2009, 10:20 AM
Hey Ku,

Check out my new thread on Laurie's Lounge called 2nd Opinion I put Doc's info there...I also have Harvard Pilgrim HMO...she seems very knowledgeable.

Angel Oliver
02-08-2009, 10:36 AM
Oh after of course lol :) I remember the day well. I had my mam rubbing cream into my shoulder, by this time i was in total agony, breathing was so difficult and the pain was awful. Obviously i trusted the doctors as i limp and coughed my way to do my mams shopping. On my way home, i got this sharpe stabbing pain which was excrutiating and i knew then ...something was going wrong. I slowly walked with shopping and got home. I told my mam i was in pain and couldnt take deep breaths as it hurt so bad. So i decided to hang out the washing for my mam lol. It was here i started worse. My mam sent me home to bed. Over the next hours it was getting too painful to breath so i was now taking very shallow breaths. We had people coming for tea....so i got up as usual. Then i rang for advice from a doctor. He arrived within minutes. I was immediately rushed to hospital and put on i think Heperin and had an injection in my stomach and now i was in total pain. I was put on oxygen, scanned and thats where they found the pulled muscle lol. A big clot they said would have killed me if i had not called the Doctor. I spent a couple of weeks in hospital and then released and put on warfarin. It took along time to get over as the clot had scarred and it still hurt when i breathed. But i got over it. Now i have Asthma, but luckily touch wood....after a year of bad attacks....its getting much better and i have meds for it and a neb.
Sorry its a long one. But glad you got through it too.

Angel.xxx

kukukajoo
02-08-2009, 10:58 AM
So similar and so close in age it affected us! I am 40 now and hoping for a final answer. Spanglish posted a doc she is going to see and that is where I am calling tomorrow. I am not going to mess around with this anymore! I want an answer and I want relief from symptoms soon.

Your story reminds me once of when I was preggers with my youngest. Had a serious kidney infection. ER doc told me the flank pain was pulled muscle and I asked if he had seen my urine yet, as it was bright red from blood. He said no, but that it wasnt kidney problem and left the room as I was saying well can you just look at it, you may change your mind..... He came back in 1/2 hr later all sheepish saying I was being admitted and I ended up being in there for more than a week.

Angel Oliver
02-08-2009, 11:24 AM
Oh no really. Makes me angry sometimes. Dont forget though they say i have M.E now and not Lupus. So i do feel a bit of fake still being here, but members here say its ok. The weird thing is how similar my symptoms are. But i will learn in time to truuuu.....truuuu.....trust them....see still a bit hard to say lol :)
But listen goodluck i'll be thinking of you.

Love
Angel.xxx

kukukajoo
02-08-2009, 12:41 PM
You are no fake! Your symptoms are REAL and you are too! I don't know enough about ME but can't it be possible to have both? Are you ANA negative?

I dont have confirmed Lupus either but hoping for an answer really really soon. It may still not be lupus but who knows, I am here anyhow, as I can tell everyone on here can relate and we can all learn from each other.

And you know.... the docs have been wrong before!! Keep pressing for answers and asking for rationales behind their thinking!

Angel Oliver
02-09-2009, 06:01 AM
A couple of weeks ago had my blood results...didnt see them but doctor just said it's not Lupus. Not sure where you are but in England Doctors are not as informative as they should be. Saw a Doctor today who had 2 phone calls and a cup of tea and a conversation during my time. Soooo annoying.
Yes i am glad i have this site as i can feel so low ....like now....it gives me something to focus on and take my mind off me....if you know what i mean lol...even though its always about me me me lol. :) I hope you are ok and find out your diagnosis soon. Let s hope it s not Lupus, but if it is like you said....we have each other to help us through.

Love
Angel.xx

kukukajoo
02-09-2009, 06:38 AM
Spanglish,

Thinking of you today. Hope all goes well at the appt.

I made an appt to see Dr. Schur at B&W for feb 26. Looks like I will have to pay COBRA at least in March to get this taken care of.....

mountaindreamer
02-09-2009, 12:58 PM
Hi Krissy,

I want to welcome you to the forum. You obviously have a lot to contribute, and I hope we can help you through challenging times.

I am 56 lupus since 20's, in remission for about 15 years....now back with a vengence.

Sounds like you have a great dr (i believe the neurologist). Even if this is not his specialty, just knowing that someone on your team really cares, just makes things easier....somehow.

I am so sorry to hear about the horrible experience that you just explained. I live alone, and just don't know what I would do....I do know, however, and I believe with every inch of my soul, that we have specific angels watching and guiding us. I believe that send us signs, we just have to be open to them.

Welcome, and hope you are having a day of smiles.

Phyllis

kukukajoo
02-09-2009, 06:49 PM
Thank you Phyllis! That neurologist is a great doc and willing to seek out answers instead of throwing pills at the symptom! I am grateful for sure.

I am sorry your came on with a vengenance again. The 15 years must have been bliss for you!

I did have a good day. Lots of energy until late afternoon then a nap and woke up with another headache as usual but not letting it damper me any. I just feel so hopeful since finding this group, finding a good doc to see in Boston and hoping for some relief soon and will be praying things will turn around for you as well!!

I hope I can be a useful addition here and maybe even help some with laymans explanations of medical terms with me being a nurse. I also have a knack for research so maybe I can be of use there.

rob
02-10-2009, 02:59 AM
Oh no really. Makes me angry sometimes. Dont forget though they say i have M.E now and not Lupus. So i do feel a bit of fake still being here, but members here say its ok. The weird thing is how similar my symptoms are. But i will learn in time to truuuu.....truuuu.....trust them....see still a bit hard to say lol :)
But listen goodluck i'll be thinking of you.

Love
Angel.xxx

Angel,

Your going to make me pull rank on you. Being a moderator, if there was some reason why you should not be here, I would tell you. You are not a fake! Please know that you belong here, OK? Look at it this way, this place is also for family and friends of people with lupus, and since you have a bunch of friends with lupus, meaning us, you certainly belong here. You are an integral part of this place, and you are ALWAYS welcome here.

Rob
Your (hopefully humble) Moderator

Angel Oliver
02-10-2009, 03:50 AM
Ah yes, i never thought of it that way before. Thanks Rob much appreciated.

Love
Angel.xx