If you deal with something chronic that has acute issues...

[BlsdMama]

Who the heck do you see?

 

Thus far:

 

I have a GP - local

I have my neuro at the University.

I have a neuro at Mayo

 

The problem - As this progresses, it looks more and more likely that it IS auto-immune and it is, most likely, Stiff Person PERM or Limb onset.

 

Both have "issues" associated.  So, I feel I get the most "complete" care at the University.  But I have to be so specific when asking for a referral.  So, currently I have a referral into a GI doctor - will see him this week.

 

But I have this insane chest pain/pressure problem.  

 

Three weeks ago (ish) I broke out with lesions all over my legs.  Thought ringworm, treated with fungal cream, ignored it.  It spread.  Then thought, "Oh my gosh! That new (to us) bed!  What if I brought in bedbugs?!"  RAN to the Urgent Care.  Nope, fungal - systemic.  Your liver function has to be tracked so see your GP.  So I did.  It is slowly clearing but the cream seems to have zero effect and I'm not sure the oral meds actually helped either.  Who knows.

 

But this weekend?  Incredible chest discomfort. This has been an ongoing problem.  The rib (interstitial muscle pain) has been going on for years and predates the onset of the disease.  BUT, everyone is so preoccupied with the neurological stuff that they pish posh my pain.  And, to be fair, the pain comes and goes and I can handle it with OTC meds, so I do.  I asked for a full cardiac work-up (and got it) and my heart is great.  I asked for (and got) a full cancer work-up because SPS can be brought on by cancer.  Nothing.  

 

My A.C.E. is high (normal is 8 to 53 and I'm a 53) and it can be indicative of sarcoidosis - symptoms of which include chest pain and lesions.

 

But here's my frustration - I feel like *I* am blindly throwing darts at a wall.  Why am *I* looking through my test results?  Why am *I* googling for pain symptoms and possibilities?  Why am *I* requesting referrals and tests.

 

 

Who in the world do I need to set a relationship up with so that SOME DOCTOR will, pretty please, be proactive and TRY to find out where the heck my pain is coming from?

 

Because, like I told DH, this weekend, in a fair bit of pain, going to the ER or Urgent Care is useless.  We know it's not a heart attack.  I'm not having problems breathing and discomfort doesn't increase with breathing.  I can manage it with Tylenol and Advil but it is hard on the body and I take it EVERY day.  Everyone's solution is to give me meds.  I have a medicine chest FULL of pain relievers, none of which I want to take with a familial history of addiction.

 

Could we NOT just take a break from fussing over the stupid nervous system and LISTEN to the patient.  I have pain.  Please, please find out WHY.  Not fix it, I realize maybe you can't.  But find out WHY.

 

 

[Selkie]

:grouphug: How frustrating! I'm so sorry. I hope you find someone who can give you helpful answers.

[bethben]

Can you find someone at Mayo who can do co-ordinated care? I have found someone like that for my son who often needs multiple providers to figure out muscular/skeletal issues.

 

 

Sent from my iPhone using Tapatalk

Edited January 29, 2018 by bethben

[Spryte]

I’m so sorry.

 

It’s like having a lot of different docs to look at parts of you, but they see only those parts and don’t put it all together in a big picture. You are compartmentalized. :(

 

It’s so frustrating, and you’re not alone.

 

At the height of my similar experience, I regularly saw a neuro, a rheumie, a GI doc, a cardio, and my GP at the time. It was a mess. When I finally found my current doc, 16 years ago, she took four hours for that first appointment and looked at everything. Oh goodness, it was such a relief. I could release the responsibility for scouring all those lab reports. She is my LLMD, though she does much more than Lyme treatment, and I don’t technically have Lyme anymore. She’s a GP, and she is an amazing diagnostician.

 

So, now I see her. She follows me for all the crazy weird acute things, and because I live 2 hours away, I just go to an urgent care for immediate needs like flu or strep tests. If I need a specialist for something, I’ll go, but she coordinates my care.

 

So - a GP, but a special one.

 

Do you have one doc you like more than the others, with whom you could discuss this, tell them you want to be seen as a whole person, and ask them to coordinate your care?

[prairiewindmomma]

Usually, one doctor will become the point person who will receive records from all specialists (even if they are a specialist themself) and handle most things. If your primary isn't up to the task, it may be time to upgrade to an internal medicine dr or to ask the university neuro to do that for you. Systemic fungal infections aren't surprising if you've been taking decadron or other steroids. It also isn't surprising if you end up with a care team of 6-7 doctors. It's one reason we try to stay with one hospital or university affiliation--automatic shared electronic records.

[happypamama]

I’m so sorry you’re dealing with all of that.

 

My health issues are less tricky, but I have a few minor things that do require some monitoring. I love my primary care physician. She prescribes all of my medicines and keeps tabs on necessary bloodwork. My asthma is generally well controlled, so she writes me refills for albuterol. She also prescribed a steroid inhaler to use when I have flare ups. She did send me to an allergist at my request, and they concurred with her recommendations. At any point that the regular prescriptions aren’t doing the trick, I’ll contact her, and she will change something or (I assume) send me to pulmonology. After severe preeclampsia, my primary doctor and my MFM sent me to cardiology and nephrology, although it’s my primary who prescribed my BP meds. I will continue to see nephrology once a year for a while, but I also have instructions from him to call if my numbers go above a threshold regularly. If they do, he will likely add another med, and he’ll send a report to my primary.

 

I kind of feel like the primary’s job is to coordinate everything into one coherent profile, if that makes sense. Nephrology keeps tabs on my kidneys but focuses on them and not so much on my lungs or overall lifestyle, other than to look for obvious drug interactions and such. Primary takes it all into consideration (and she’s also my children’s doctor, so she knows ALL of it). However, every time I’ve asked about a specialist for myself or my children, she’s been very happy to name the appropriate one and to write the referral. If your primary isn’t giving you satisfactory referrals, I’d look for a new primary. Alternately, I would ask the neuro at the University who they can recommend for pain, whether that’s a specialist or a different primary. I love my MFM for instance, and knowing that I’ll be high risk in another pregnancy and not midwife-eligible, I’ll need an OB. I figure I might as well pick one who is used to coordinating with the MFM, same as when I wanted nephrology, I requested the one that is used to working with the MFM’s patients.

 

I hope you find someone to give you some answers and relief!!

[Monica_in_Switzerland]

I think sometimes, that's just the way it goes.  

 

If at all possible, I would look to find out who is publishing research on your condition.  It'll probably be an MD-PhD.  Chances are (statistically speaking) that they won't be anywhere near you.  I would still attempt to contact that person and ask them if they do any type of online consultations or can recommend a doctor who can treat the disease rather than putting out each individual symptom fire.  

 

We have some weird medical issues in both my immediate and extended family.  For some, we have been lucky enough to find an expert within an hour.  For others, we travel up to 3 hours.  (It helps to live in a country that's only a five hour drive to cross...).  I know in the US, people sometimes have to travel great distances to get a true expert if the disease is rare enough.  

 

I totally get what you are saying- isn't this the DOCTOR'S JOB?  But I've read many an article over the years pointing out that patients are far more invested in their health outcomes than doctors and routinely find solutions that doctors are too overworked to find.  So keep doing the hard work.  It puts you in a position to ask better questions and make better decisions.  

[BlsdMama]

Usually, one doctor will become the point person who will receive records from all specialists (even if they are a specialist themself) and handle most things. If your primary isn't up to the task, it may be time to upgrade to an internal medicine dr or to ask the university neuro to do that for you. Systemic fungal infections aren't surprising if you've been taking decadron or other steroids. It also isn't surprising if you end up with a care team of 6-7 doctors. It's one reason we try to stay with one hospital or university affiliation--automatic shared electronic records.

 

 

So, would internal med be the one to seek out?  Do they do that - juggle multiple docs, tests, etc.  I think that's what I need - someone more confident in handling me than my GP.

 

I hate the idea of leaving my GP.  He's close (like a mile away) and I like his staff.  But I do feel like, in order to get anything, I have to jump through 100 hoops.  Well, what i actually have to do is get another doctor to ask him to order it - whatever it is.  The University is almost an hour away and Mayo is 2.5.  

 

And, while I think the U is the way to go on this, at the same time, I am up there CONSTANTLY at this point - like at least 1-2 times each week.  And, being a homeschooling mom with little kids, making my appointments last 3-4 hours with drive time, a couple days a week is really stretching me to my max.  Currently I am operating at 100% but that isn't going to last.  

 

Ugh.  

 

And I think, eventually, I won't have my current neuro.  I *really* like him and, more than even that, I like his nurse.  But, frankly, he's a busy guy with people far sicker than me.  He specializes in neuromuscular/motor neuron disease which is why he is mine, but if I end up to have immune/neuro then I assume I'll be shuffled to someone else.  Maybe.  

 

 

 

The idea of sorting through doctors to find one to manage and juggle this is SO overwhelming.

I can't even imagine for someone who is old, or at 50%, or .........  

[BlsdMama]

And I think I have the flu.

 

Tami flu?  You suck.  You did not work.

 

My chest hurts and I can feel the flu stalking me :zombiechase: .  I have successfully avoided it being in MY house for two weeks and now it's my turn.

 

whine, whine, whine, whine, whine, whine

 

 

[Spryte]

And I think I have the flu.

 

Tami flu? You suck. You did not work.

 

My chest hurts and I can feel the flu stalking me :zombiechase: . I have successfully avoided it being in MY house for two weeks and now it's my turn.

 

whine, whine, whine, whine, whine, whine

Oh no. :(

 

Rest. Fluids.

[prairiewindmomma]

I have found it helpful to have dedicated medical days--like taking two days a week and having those be the days that you shove all of your appointments onto. I would use those same days to go to Costco and do my big city errands.

 

Internal medicine doctors are generally more well-versed but you need to find someone good. I'd ask the university doctor for a few name and then go vet them. My original primary dr was well meaning but overwhelmed by me, iykwim.

[Granny_Weatherwax]

:grouphug:

[Monica_in_Switzerland]

:grouphug:

[MBM]

You might want to read Valter Longo’s new book that explains how you can repair a damaged immune system. Longo is a researcher at USC. You will probably think this is unbelievable but he uses supervised fasting or a fasting mimicking diet. Basically, the fast destroys damaged immune cells and when you begin to eat again, your body creates new stem cells that replace the cells that were destroyed.

 

He did an interview with Rhonda Patrick, also a respected scientist, that’s on You Tube. It’s long and a bit technical but very interesting.

 

Longo is overseeing human studies that involve autoimmune diseases like MS and is seeing really good results.

 

I hope you find something that helps. I’m impressed how chipper you are but it can’t be easy.

Edited January 29, 2018 by MBM

[BlsdMama]

I have found it helpful to have dedicated medical days--like taking two days a week and having those be the days that you shove all of your appointments onto. I would use those same days to go to Costco and do my big city errands.

 

Internal medicine doctors are generally more well-versed but you need to find someone good. I'd ask the university doctor for a few name and then go vet them. My original primary dr was well meaning but overwhelmed by me, iykwim.

 

 

I think maybe when we get this pinned down and sorted through, that could work.  IVIG takes about six hours on its own.  The consults are hit or miss and can't be scheduled around things.  I'm generally taking first available or cancellations or wait a long while.  Once this is sorted through I don't see being so... needy?  Sporadic?  KWIM?

 

I think that's my frustration.  If I just knew what this WAS, then we wouldn't have these episodes of "Go to the ER?" "Go to Urgent Care?"  "Doesn't matter - nothing they can do anyway."  If I just had a clue that pain was just spasms (it's not) or the result of X and it's just something to put up with and deal with, then fine.  But right now it feels a little like a merry go 'round where each doctor has their own vested interest (aka specialty) and none of them want to take responsibility for finding the pain because the neuro stuff is so much more fascinating, which, honestly, I GET.  I do.  It's more interesting, it's definitely serious, etc.,  BUT the problem with all of that is that, at the end of the day, you have a patient experiencing pain that may or may not have something to do with the SPS and could we, for goodness sakes, figure out if it can even BE altered.

 

 

Yeah, I think you're right.  I'll ask the next time I see my neuro.  

I guess the question is - in the mean time what do I do?  I'm earnestly looking for suggestions.

 

I can go back to my PCP.  I could get in today, probably even this morning.  But then what?  He will do nothing that I don't specifically ask for and he double checks with some other doc.

Urgent Care isn't going to order a chest x-ray and a lung biopsy.  They're going to send me to the ER.

 

At the ER I could get both.  Pretty sure the x-ray will show pneumonia again.  (Side note: I don't have pneumonia.  They just keep telling me I do.  I think it's sarcoidosis now that I've had the lesions.)  

Heaven help me if they admit.  Seriously.  My in laws are in Florida.  And it will do NO good except I could get a faster lung biopsy.  I know I have the flu because everyone in my house has it and I can feel it coming on and if I go in with a history of serious medical crap (never mind that my immune system is OVER working, not under working) and the chest x-ray isn't clear then they will admit.  

 

And my husband is supposed to leave on WEDNESDAY for the rest of the week.

 

All I want is a reliable doc that will order the damn chest x-ray and then the biopsy and make a workable plan.  That's it.

 

And it isn't going to happen right now.  No.  I need to interview doctors and deal with finding a new one.

 

And could things be worse?

 

They could be SO much worse.

I could have no medical insurance.  I could have the deductible we had two years ago.  (Ouch.)  

I could live in a third world country.

I could have ALS right now.  Seriously.  Just that.

 

Have I mentioned I'm worse than any man child when I start to get sick?  My husband is a freaking champ and I am the whiner of the world.  Major disease? Fine.  Flu?  Mess.

[Pawz4me]

So, would internal med be the one to seek out?  Do they do that - juggle multiple docs, tests, etc.  I think that's what I need - someone more confident in handling me than my GP.

 

That's what I'd do, or at least try it as a first step. Internal medicine doctors are primary care doctors for adults, but they also kinda sorta specialize in coordinating care between multiple specialties. Or at least that's my understanding.

[trulycrabby]

I know from experience that it takes a few years to get to "know" your disease; which basically means to learn about the various signs and symptoms you experience as a person with sls. Also, you will learn what side effects from medications you tend to have, and what other illness or infections you are prone to get. So, as time goes on, you will get a better sense of who you need to call.

 

You might consider contacting a few of the types of doctors (such as an internist or coordinated care facility) that the other posters recommended, meet with a few, tell them what you are looking for, and see who can best meet your medical needs.

[prairiewindmomma]

Is your functional breathing still ok--i.e., are you getting enough oxygen?

 

If you are already taking a ton of ibuprofen, I'd ask your current primary for another round of steroids to get you by if you currently aren't on them.

 

If you are already on ibuprofen and steroids then I'd look into methotrexate (the injectable is way better than steroids, IME), but that is beyond what your typical primary dr is willing to do, generally speaking....but you have already had your labs and scans, so maybe not. Methotrexate + flu is a bad idea, though, so that would lean me back towards asking for steroids.

 

I'd call your primary care dr and ask him/her to give you a quick ring between patients, and see what they think.

[Kebo]

Have you considered a concierge doctor?  They have fewer patients, with more personalized care for them.  There is an extra charge for their services, though.  I haven't tried one, but I was tempted when I had a several year period of hard to figure out issues.  

[Tap]

For dd19, I am the care coordinator.

 

At almost every new doctor appointment for her (I go to every appointment), about half way through the appointment the dr will ask me if I work in health care (because of my terminology).  I tell them that I work in pharmacy, but, Im a mother of a sick teenager, so my medical experience is from a thousand hours of research.  The usually laugh in a knowing way.....because that is how it is, when you have  a serious, mysterious, medical issue.  The patient or parent, inevitably becomes the mini expert. 

 

DD19 has her same PCP that she had as a child. He is a pediatrician who also does internal medicine for adults. He is a decent doctor, but her issues are beyond his 'family care' focus.  Even though it has been 2 years since her diagnosis of POTS, I still have to explain POTS to him and how it relates to current issues when we see him.  He is good for coughs and colds but not her more complicated issues.

 

Dd's neurologist is our go to person for her POTS issues.  There are only two specialists in our area for her issue. One is her cardiologist, who is known for being a jerk.  We avoid him at almost all costs.  The other is her neurologist and it isn't actually this neurologist's current speciality.  She just so happen to do her residency and fellowship under a POTS specialist at Mayo. Her neuro saw people from all over the US who had to travel to Mayo to be seen, so when she found out the issues we were having getting good POTS information/care, she offered to oversee my daughters case. DD was seeing her for her mystery pains in her back.  It was a total, amazing, wonderful fluke to have been paired with her for neuromuscular neurology and found a POTS specialist.  There isn't really someone else who can oversee dd's care, because they don't really understand how broad reaching the POTS symptoms are. Her neurologist is a gem of a person, wickedly brilliant and a wonderful doctor all around. She communicates with me vial email and doesn't expect dd to come see her unless she actually needs a physical visit.  She not only writes all  of DD's referrals, but hand picks which doctors she wants her seen by.  

 

Before dd was diagnosed (and before this neurologist), dd was seen by 6 or 8 other specialists.  They all said....."There is something wrong, but I don't know what it is and it isn't in my specialty. Sorry, I can't help you".  So, every time I heard this, I would ask them..."If she was your daughter, who would you want her to see next"  Each time they would give me a direction to go, and an idea to pursue.  A new referral and a new idea. We didn't just go down rabbit holes, we went down ant hills.  Sooo many forks it the road.  But finally, we stumbled on a diagnosis and a plan. 

 

Even now, 2 years after diagnosis, I still spend 3 to 4 hours a week researching.  Reading medical journals and articles.  Looking for clues.  Because, like you, the issue may have a name, but as it progresses and her issues worsen, we get more information and narrows the treatment options.  At the end of the day, while her neuro will do any treatment we ask for, that she can medically justify, I still need to prompt her for the care. We are still the ones trying to piece together blood work, and because we have done so much research, knowing which new symptoms are relevant to report. 

[Teacher Mom]

I found a GP who had a Masters in Human Genetics an hour away from my home. I also found an endocrinologist who led me to a nephrologist. There is no cure and I have to have medical care around my home (within an hour driving distance) so this is the best I can do. Both my doctors LISTEN and they appreciate the articles on natural products that may help my symptoms. 

 

It took me twenty years to really find good doctors. Being military, they know you are going to leave so they kick that can down the road. I am the foremost expert on my disease state and both my doctors treat me as such. If you can't find someone who will listen, research every doctor in your area within 100 miles. When I say research, I mean find out all you can on what they studied and where they studied. Sometimes, just a common link (like Alabama football)  can make them see you as a person rather than a number. Once that link is forged, the real work begins.

 

Good luck and keep trying. There may not be full answers out there but there is help to make your life better.

[TechWife]

Can you change to an internist? They often are really good at coordinating care with complex cases. Are you close e ought to Mayo to go to an internet’s there?

 

We are in the process of looking for an internist for my son who has a complex history as well as Aspberger Syndrome. There are a lot of them around, but by the time I weed out the md’s that don’t use our preferred hospital and the ones who., I have been told are “brilliant, but no bedside manner, I am not sure where to go next! We need to get it settled soon. I think the pediatrician is getting tired of getting visit notes on him, but for now, they are serving as his medical home, so here we are!