Too many symptoms can get you ignored

[BOK2Bjan]

I have read many posts that remind me of some of my journey.  The diagnosis of MS is one that rarely comes quickly, but I imagine there are many times that it never comes at all - even though the patient does indeed have MS.  I have had autoimmune diseases for many years.  One piles on top of another - sometimes changing, but usually staying and new ones being confirmed.  When I had been diagnosed with Systemic Sclerosis - because it has such a broad spectrum of symptoms and tissue damage, every new symptom I had was placed under this umbrella for quite a while.

I kept having neurological symptoms, to which my internist would respond "Do you know if neurological symptoms are ever a part of this disease?" (he's not a rheumatologist after all)  I would say no, I didn't think so.  He'd send me to a neuro, and I'd get lots of isolated diagnosis.  Trigeminal Neuralgia, Temporary Paralysis of unknown cause, ___of unknown cause. . . . .   I started having half of my face go numb, last a while and go away, but my doc would kind of stare at me and say "hmmmmm".  

I had multiple health problems and was in the hospital several times a year.  At first I had pneumonia and sinus infections and ear infections all the time.   I also had GI problems stemming from the Systemic Sclerosis.  So, CT scans and MRIs would be done, yet I'd be told they were fine.  I am the type who gets copies of my labs and tests, but when hospitalized, I wouldn't get copies of everything - there was just too much going on.  I have very few organs, if any, that remain healthy.

One year while I was in the hospital for something, I had to have a lumbar puncture, which I'd had before.  I needed a blood patch and had to go back in.  (Again - no mention of MS yet)  Then a neurologist I'd seen in a previous hospitalization came into my room and told me I had MS - a slam dunk diagnosis.  LP was positive, lesions were typical, and clinical picture was classic.  I was floored!!!  She handed me a piece of paper with the name of 4 drugs (DMARDS) and to research them and let her know which one I wanted to go on - that I'd need to start as soon as possible.  That was it.

I had an appt with her a month or 2 later and was expecting lots of info on the disease and what not - nothing!  Just - which drug do you want?  I had one other appt with her, when she said the infamous line "what you need is some fairy dust" - meaning I was too sick and diseased to be helped.  She said that she wouldn't be able to really help me, as I had too many other diseases and trying to figure out which one was causing which symptom was impossible.  I needed a specialist - but discovered I couldn't see one with Medicaid.

I have been outraged before with the medical profession.  After all - they see so many patients, some with problems they don't want to deal with, some with problems they don't understand, some they just don't get along with, and after a while, it would be hard for any of us to maintain the level of empathy and interest necessary to help each patient.  We all know, however, that some are just bad.

I found out that my lesions had been present for years and the radiologists had suggested that there was no doubt some sort of demeylinating white matter disease was going on - perhaps MS.  But it was never mentioned - nor - when I had symptoms, did they inquire further, or suggest an LP.  (for a long time)  I believe the fact that I already had so many diagnosed conditions led the doctors to assume my symptoms fell into an already diagnosed disease.  My internist admitted he had felt that way to me.  But the neurologists - I don't understand.

The point to this post is that sometimes you can have both MS AND other diseases.  It is not as uncommon as most assume.  AND sometimes the patient with symptoms that involve the entire body, who are assumed to of course NOT have MS - do have it.  There are so many assumptions made in medicine.  Med School teaches not to look for zebras - If there's a simple explanation - take it and move on.

In my case - damage was done due to not having my diagnoses made correctly.  Medications were given that did a great deal of harm.  In large part, it was inevitable that my prognosis be poor, but had I been listened to - and taken at my word - I'd be a lot better off.  I had many Rheumys dismiss me as having fibro. even though I was saying to them at the time - no, I don't have any pain there - no - not there either.  One guy yelled at me and said after 25 years he knew fibromyalgia when he saw it!!!!!  Me thinks NOT.  I do not have it nor did I ever.  It's one of the few things I can say I never had.  For some reason, he'd made his mind up what I had before the exam and just didn't listen.

Fellow Frustrated Friends - stick to your guns if you know you have something wrong or if no one is giving you the time of day.  Yes - sometimes they are right - but everyone must stop assuming they are always right - especially doctors.  Only the patient knows what they feel like, and the art of medicine has a long way to go before we truly understand the complexities of the human body.  It is an amazing intricate machine!  Neither patients nor doctors have all the answers and it would be nice if we all humbled ourselves a bit and would communicate with each other with mutual respect.  I read in a consultation letter from my last hospitalization (2 transfusions and other fun stuff) - "it should be noted that the patient used the term " ____________" when explaining her condition"  !Would you believe I used the correct medical term for the disorder?  "Tardive Dyskinesia"!  I didn't realize there was a different word for that!  I think this is a case of ____ if you do ______if you don't.  We're supposed to be self advocates and be informed about our conditions, yet if you are - doctors are a bit suspect?!

Blessings All - When you get frustrated, remember you're not alone.

Jan

[BOK2Bjan]

Glad some of you found my post of use, and/or cathartic.  I will repeat my earlier statement, that everyone's situation is different, and the doctors are, of course, different too.  But, the other contributing factor that I have is my status as a Medicaid patient.  I do not have the option to see many specialists - and those I see, I see only rarely.  I love my internist - he's always asking me if I've learned anything new we could try from one of the forums.  It frustrates him terribly that my insurance won't cover anything of an "alternative" nature.  I love that about him.  I've been seeing him for over 30 years off and on.

There's just a natural tendency, given the Western medical paradigm, to not "see" the patient as a whole - and try to discover what may have initially led to the imbalances which led to - the disease, or diseases.  Then once one is found - if it is inclusive enough (i.e., has a long enough list of clinical symptoms), everything gets dumped into that "cause".  I am not one of these people who think only one philosophical approach to health is right and another wrong.  I, rather, believe we should be open and intelligent enough to use whatever part of whatever system is needed at the time - and when appropriate.  And - I couldn't agree more with Alex's comment - Our health IS a team effort, which includes the patient, and unfortunately, although there are many great doctors, there are those who do not believe their patients have a clue what's going on in their own bodies - and if they "sound" knowledgeable - that must be a problem too!  ha ha  (The 'ol catch-22)

One thing I have been fortunate about - is that all of my diseases made themselves  diagnosable, such that  there aren't any docs that disagree with their validity.  I don't mean to repeat myself (hope I'm not much) but the biggest issue for me is that every doctor who sees me is stunned by the sheer volume of symptoms, and number of diagnosed conditions.  It hit home, when my Internist's partner saw me and, according to my doc, I made him "weak kneed" - and he is a palliative care doctor.  He said to me "well, at least I can be sure that I won't see a patient today who is in a worse condition than you".  Now if THAT didn't make me feel "special" - I don't know what would! lol

Lulu - I'm glad there are others who wrestle with the problem of actually "knowing something".  What they don't realize is some of us are very well educated.  I was planning to be a physician and my plans were derailed.  But I'd already been educated a great deal in the field.  Even my mother wanted to be a doctor.  At least my 21 year old daughter is actually pursuing it.  She plans to specialize in Peds.  SO proud, of course.

On another subject, my footdrop has made itself more of a dangerous problem.  I've been doing a lot of tripping, but this week, I tripped and went down face first - fast and hard.  It was one of those - "there's no way I can get out of this!"  My face was actually spared, but my ankle, knee, ribs, elbow and the heal of my hand got it "good".  WAAAA!  I don't like my brace!!!  (thought I'd vent and whine a bit)

Take care everyone and blessings.  I hope we can all maintain grace for ourselves, as well as those who may make our lives more difficult.  After all, I'm just as imperfect as the next guy or gal!  Thank you Lord, for Grace!!

Jan

[HVAC]

I find with all my Doctors I can only bring up one problem per visit. This is the way the medical system works. It gets hard to with all the Specialization. I do not know which Doctor to go to so I need a good PCP and sometimes it is trial and error.

My PCP has been the most important to me. She is a great diagnostician and she is wonderful at consulting with Specialists. I totally trust her judgment.

I have my medical history all written out because it is complicated. I do not bombard Doctors with it. I show it to them when they ask. I usually let Doctors do there thing first then when they ask for questions I briefly ask questions.

I take as much of my health care into my own hands. First by not smoking, drinking, using drugs, following an excellent diet, exercising, and using hypnosis for pain and stress reduction.  I found salt rinses to be excellent for the sinuses and tonsils so I use it mostly for infection. I rarely go on antibiotics anymore. I get vaccinated for everything I can.

Health care is a team effort. I respect my Doctors if I do not I move on to another Doctor.

Alex

[Lulu54]

Hi Jan, it is good to see you here again.  You have so many valid points in your post I feel like we should read this more than once to pick up on everything.

Your problem of being too knowledgeable in one I sometimes wrestle with.  MY cardio and my neuro know that I do research online  because I have brought things that I have found to their attentiion.  I have also casually mentioned being involved with an online group, but don't volunteer too much information.

The medical community always tells us that we must take charge of ourselves, but so many of you report getting the cold shoulder or being shown the door when you have been too knowledgeable.  I just don't get it.


Thanks, Jan, for taking the time to compose this.  I think it will be useful to many of our limbolanders -

be well,
Lulu

[siv1]

Hi Jan,
I agree completly about too many symptoms makes the DR's frustrated, My GP Was a good one that didn't want to give up and listned to me. He took the approch of ruling out many disease while sending me to specialist.

My 1st Spinal Specialist told me "Hope you get better in 6 months and your pain goes away". Specialist didn't look into why I had both leg and arm pain started at the same time and didn't want to connect the Brain to simultaniously started pain. He started treating it as a seperate nerve problem even after I and my wife told him, the pain just poped up at the same time.

So I can see why Dr's get frustrated when the knowledge thay have from book doesn't fit with the actual explaining from patient.
All it takes from specialists is to just look past book, and listen to patients at times. It is always good to have a GP that will listen to patient and won't give up and send you to other specialists when one fails.

[Sarahsmom46]

I found your post very compelling and your message was crystal clear.  I hope each and every one of us on this forum gets a chance to read it and become stronger for it.  

You are absolutely correct that any of us can have MS and another accompanying medical condition.  Many times the symptoms are overlapping and it is hard to discern which is the culprit. But we know our bodies best and if we have a doctor who will trust us then life would be so much easier.

You also mentioned assumptions doctors' make about us.  Another thing came to mind when I read that.  From my recent hospitalization, I realized how the assumptions made by a treating doctor can be influenced by one of their colleagues who had treated us before.  For example, I was seeing this neuro 2 years ago who immediately diagnosed me with conversion disorder.  I fired him when I realized that he was only considering this diagnosis and not willing to look any further in my case.  He made assumptions early on and refused to step out of that box.  I was finally dx with MS from the doctor he referred me to for a second opinion.  A year ago, I was again hospitalized and he was the treating doctor, against my wishes of course.  He was shocked and dismayed I was finally dx with MS and quickly confirmed that as soon as he left the room.  Now this past April I was hospitalized again and one of his colleagues was my treating physician.  Things started out fine between us until I a few days later when I started getting a feeling she was questioning my dx.  I finally called her out on it and asked why she was questioning my dx.  First thing that came out of her mouth was that she spoke with her colleague, the neuro I fired, and I immediately stopped her and requested that she needs to be talking to my MS neuro at neuro at NIH since clearly she is not getting updated information.  

Sorry for the long explanation but your comments really touched a sensitive nerve in me, one of those things that keeps knawing at you until you get it out.  In a nutshell what I was trying to say is that we need to be careful about seeing docs in the same practice because those assumptions are so dangerous as you had so eloquently stated in your post.

I wish you the best in your ongoing medical challenges and want to thank you agin for sharing this very compelling story with us.  

Take good care.

Julie