Another Update…

    • Anonymous
      October 18, 2010 at 3:01 pm

      Hello All,

      For those who are new, I started visiting here about a year and a half ago, and like too many here, jumped through all the various hoops and suffered all the trials of someone in search of a diagnosis. It’s for that reason, especially, that I’m posting this update.

      Over the past year and a half, I’ve seen approximately 20 different doctors…6 neurologists alone! All scratched their heads when confronted with my symptoms, trying in vain to make every single symptom fall into one diagnosible condition. You can do a search and see my former posts, where I explain my symptoms in detail, I won’t repeat all of them here; but, they are the usual set that I have seen from so many who come here looking for support when they can’t seem to find any in the “real world”.

      Throughout my journey, a couple of doctors suggested that “something” was going on, but their thoughts were that it just hadn’t “matured” yet to a condition that would clearly present itself. I’ve undergone EMG’s, blood tests, MRI’s, psychological exams; the full gamut. Throughout it all, I refused to give up, because I KNEW that something wasn’t right in my body, and I wasn’t going to stop until I found out what it was. I didn’t care if the entire world thought I was NUTS, I knew something was wrong.

      Since I last posted, it was suggested that I have Fibromyalgia, Myofascial Pain Syndrome, and Chronic Fatigue Syndrome. I accepted those diagnoses, and applied for a short-term, and then long-term, disability, based on my inability to meet my employers demands at work. I’m still waiting to hear back on the long-term…I’m hoping to hear anytime now. That would give me up to four years to seek treatment, diagnoses, etc., and hopefully get to a point where I could return to the workforce. One interesting note: when I approached my PCP (Primary Care Physician) about completing the disability paperwork, he emphatically said, “NO”. I had just gathered all my records, to support my claim, and was astonished, because just for this ONE doctor alone, for the past ten years, I’d amassed almost FOUR HUNDRED PAGES of records!!! His reason, and this is a direct quote: “It takes an incredible amount of time, and it doesn’t pay a thing. We only get paid for seeing patients, not for filling out papers.” WOW! ๐Ÿ˜ฎ Luckily, the rheumatologist he sent me to agreed to complete them, after only having seen me twice.

      But, back to my point: I think I’ve finally found out the “root” cause of many of my symptoms. I recently started developing these “bumps” on my arms, just below the elbow. My (new) PCP ๐Ÿ˜‰ suggested they were just “fatty cysts” and to ignore them. When I saw my rheumatologist a couple weeks later, though, I asked her if they could be related to the FM she had diagnosed. She examined my arms, felt my knuckles and toes, and quite non-chalantly stated that she doesn’t think they’re “fatty cysts”, but rather, “Rheumatoid Nodules”, and that I’m in early stage Rheumatoid Arthritis. While that’s not great news, it would cause many of my symptoms to make sense and actually fit together. I probably DO have Fibromyalgia and CFS, as they very commonly coexist with RA. And, I found out, just because I tested negative on the rheumo blood test several years ago, that that means nothing. I’m being re-tested, and have been told that it’s not uncommon to test negative once, and then positive a few years later. It’s also not THAT uncommon for someone to test negative all the time, and still have RA…about 30% of RA patients are “seronegative”. The worst news, I guess was that the presence of nodules usually indicates a very aggressive form of RA, and one that will need to be treated seriously from the start…no just taking Advil. It’s ironic that RA was one of my first concerns, but have been told by so many doctors “Can’t be…you tested negative…”, that I started believing them. It runs heavily in the family; since my diagnosis I discovered that my brother is also RA positive…he just chose to never tell anyone! ???

      My long-winded point is this: [B][I]DO NOT GIVE UP ON FINDING OUT WHAT’S WRONG!!!!![/I][/B] You may not find out you’ve got CIDP, or GBS, or MS, or whatever…but it’s important that you DO find out, for your own sanity’s sake, if nothing else! If you stop before you’re content, you will always wonder, have doubts, and peace of mind will never come. At least now, even though I have the same illness that killed (literally) my mother, I have a sense of peace and calm because I fought the good fight, and didn’t give up. I have some validation!! If you have to, look at it this way: Each wasted appointment gets you one appointment closer to the truth!

      You are all in my prayers constantly, and I hope nothing but the best for all of you. Winter’s coming…make sure you schedule plenty of “warm” time!! ๐Ÿ™‚


    • Anonymous
      October 18, 2010 at 11:12 pm

      Most, if not all Drs offices [U]charge set fees[/U] for filing out disability paperwork, FMLA, etc. No, they don’t get compensated for otherwise, and should be, it is their professional, expert medical opinion on a highly individual case they are giving.

      It is important that they are compensated appropriately.

    • Anonymous
      October 19, 2010 at 12:18 am

      [I]I find it interesting that you seem to assume that I wanted this doctor to work “for free”. You know what they say about “assuming”, right?[/I] ๐Ÿ˜ก

      I offered to pay for his time; I offered to complete as much of the form as possible myself; I asked what his requirements would be to complete the form. Nothing. I have visited the man over 200 times in 10 years; between co-pays and insurance claims, I really think he’s made enough money to complete a two-page document for me. No narrative was required; two pages. That’s it. It wasn’t an SSDI application, it was a simple Long-Term Disability application for a major US insurer. I agree that doctors should be adequately compensated. I also believe that a “doctor/patient relationship” should mean something. I’ve gone to this doctor, as have my wife and kids, for over ten years. And then, when I need his help the most, he turns his back on me? Not…”Okay, I’ll complete the paperwork; here’s my fee”, but rather, “I’ve never done it, and I never will. Period.” I would have been willing to pay a reasonable price for his time; that wasn’t even a consideration though. The reason I asked him, btw, was because of our long-standing relationship. He is the one that has referred me to every specialist, and he is the one that is applying the treatments that most of them have ordered. He knows EVERY ASPECT of my medical history, better than any other physician. My rheumatologist had only seen me twice to that point, and I assumed she might balk at completing the paperwork. She did not; she completed it…and SHE DIDN’T CHARGE A DIME! She knows she’ll more than make up whatever it cost her, in the long run.

      Every other health professional, including other doctors, have been appalled at how my request was handled, and all have suggested I run, not walk, to another doctor.

      I filed a complaint with the State Medical Licensing Board, the Hospital network the doctor represents, and the doctor himself. As I said, and as I pointed out in my letter…no amount of money would have changed his mind; he simply didn’t want to be bothered. So, I’ll accomodate him, and never bother him ever again.

    • Anonymous
      October 19, 2010 at 3:11 am

      I underlined, ‘charge set fees’, because in my state and I am an RN. I have never walked into a Drs office that didn’t have their fee schedule for paperwork posted at the front check in window.

      It may vary by region, but in my state that would be unheard of and very uncommon for the list to not be posted. I can imagine maybe asking for a list if it wasn’t posted….but all drs here have a set schedule and it is one of things we sign for being aware of as a new patient.

      I’m sorry your experience was so poor with that Dr. That really reflects on the Dr and would turn me elsewhere based on that alone. Not only are they unwilling to help, but they don’t even sound like they know –or care — how to!


    • Anonymous
      October 19, 2010 at 11:56 am

      Hi Elmo,

      I just wanted to say how much I admire the fact that you have fought this
      battle with so much courage. I know my doctor’s are still looking for answers,
      and sometimes I do just want to chuck it all and say the #%*!! with it all but
      I know I can’t because I have so much to live for. I haven’t written for awhile
      because I mostly have been listening, reading, and contemplating what every-
      one is writing on the forum. I’m so sorry you had that experience with your
      Dr. of 10 yrs. I would of been devastated!! This Frid. I have a skin biopsy done. I’m still getting my IVIG treatments 1x mth which I know are helping
      tremendously w/my strenght, balance, pain, etc. but now I don’t know how
      long the insuance co. will let them continue because my EMT, NCS are neg.
      Have been having shoulder pain for 6 mths and gout like pain in big to for
      couple of mths. now. Clear up one pain and another one pops up. Can’t get
      rid of bad chest cough either. I keep on smiling though, the weather here has
      been great and life is good. Take care Elmo, you are always in my prayers.

      Miss Judy

    • Anonymous
      October 19, 2010 at 4:31 pm

      Interesting…posted fees in a doctor’s office. I’ve NEVER seen that, anywhere. Only place I see that is fast-food restaurants and car-repair shops. I’m not saying I don’t believe you; I’m sure in your state it’s the case. But, I’ve lived in Utah my entire adult life, and I’ve [I][B]never[/B][/I] seen it. I sincerely doubt that, if asked, a doctor’s office could even provide a written copy of a fee schedule. I have seen it for dentist’s, but not posted, only in writing if you specifically request a copy.

      When I read your post, my first thought was standing at the reception desk of my doctor, kind of like at “McDonalds[I]”…”I’ll take two throat cultures, a urine test, and a prostate exam…TO GO! And, no, I wouldn’t like fries with that…”.[/I] ๐Ÿ˜€

    • Anonymous
      October 19, 2010 at 4:51 pm


      I am in your shoes. I am have been searching for a diagnosis for a year now, and have concluded on my own that I have early stages of RA, maybe even reactive arthritis, fibro and CFS. I was told in the beginning possible mild GBS. Then POTS, dysautonomia. Now I have exhausted the neuros too and have moved on to the rheumatologists. The last one told me that he has seen patients that have developed fibro from the flu vaccine and my PCP just mentioned that seronegative RA to me last week when I asked if you can still have something even though all your tests are “normal.” What is not normal is my ANA is elevated and I have now developed arthritis in my foot (confirmed by an ortho) that I have never had before. That is why I am convinced there is an autoimmune arthritis going…I have fatigue, muscle and joint pain, popping/clicking in my joints now. I have been following your story and while I am not glad to hear you have RA, at least now you have a diagnosis and can start treatment. The stress of not knowing what is wrong with you and what could be wrong with you is very hard to deal with and definitely aggravates your symptoms!! I wish you the best of luck Elmo with your treatment. Thanks for coming back to post. It gives me hope that someday they will be able to find out what is wrong with me too and to help.

    • Anonymous
      October 19, 2010 at 8:33 pm

      It’s long and hearbreaking and mind boggling at times? To make it worse? WE the patients, don’t have a clue about the medical ‘politics’ going on behind the scenes!
      I got my BEST last opinion fast! W/the head of a respected neuro dept? And the tests he did while I was there [mostly the VIALS of blood] and subsequent tests I could do more locally, I GOT IT! One good thing tho? My current neruo [who diagnosed me] and the neuro [who treats me] are in communication! My neuro is a lecturer at my digagnostic neruo’s teaching facility! That EXCHANGE in diagnostics is ongoing? That is a super thing!
      The whole thing took me a year of hard work, lots- no, heaps of tests. Bloodworks, scans and more. Then even more! Fudgsicles! I am now a completely TRAINED patient!… It’s served me well when other med issues popped up and Docs and Techs alike always look at me in amazement. Thing is… Being good at being tested? Isn’t always easy, AND… definitely not fun! Plus it takes a longer while than YOU WANT! But, if you keep your patience hat on, and keep plugging? You can get somewhere closer than where you were in the beginning!
      I’ve never seen POSTED FEEs anywhere, and I wrestle with this for silly reasons… My insurance company has me on their ‘red’list or the like? As I’ve always got problems with some billing by some providers, and THEY are always truly funky problems… w/the providers, not w/me. I’m just lucky to use them?
      Any non flaring bouts of pain? Are gifts to me! I’ll take them as that, and worry about the consequences later. Relief is just that, A ‘let up’ if just fine with me, if and when it happens.
      These days I’m just trying to get around and get on with life! HUGS TO ALL!!!! Keep faith that you can get an ultimate diagnosis and treatment…
      Records! What they write about you that you don’t know about! BAH!!! And worse… I just wish they were more transparent about THIS? So we could TALK about the WHYS of such changes in attitude…and have a chance to sort things out… before it damages any disability chances down the road…
      I truly don’t know HOW one could approach a neuro about THIS? Any body got any ideas?
      Hugs to you Elmo, and to all others here!

    • Anonymous
      October 19, 2010 at 9:10 pm

      I was diagnosed with CIDP in April. Before and since my diagnosis I developed small, hard lumps on the knuckles of my left ring finger and right thumb, about the size of a pea. At first they hurt, but now they don’t. I have also been struggling with a very painful neck and headaches for the past year and a half. I read that RA often attacks the neck. I wonder if it is possible to have CIDP and RA?

    • Anonymous
      October 19, 2010 at 10:54 pm


      RA and CIDP? I’m not going to say it’s not possible…one thing I’ve learned over the past year and a half is that, especially among auto-immune disorders, anything is possible. They all seem to have their lists of symptoms and typical methods of onset, but there are as many exceptions as there are rules! Seems like every neuro I saw was convinced that CIDP “HAS TO” start in the feet….”never starts in the hands…always starts in the feet…” (read that in your best “RainMan” voice to get full effect…).

      I only know enough about RA to be dangerous; the things I “Know” about it are anecdotal from watching my mother suffer with it for 20+ years. Horrible disease. When she married, at age 19, she wore a size 4 wedding ring; after she died and we were going through her things, her original rings looked like baby “toe rings”. She was always so proud of her elegant fingers; then later on they looked like gnarled pieces of jerky. I watched her suffer through having all ten “base knuckles” (the ones that attach the fingers to the hand) replaced with nylon joints, and then one hand done again ten years later. Every “base knuckle” on her feet had to be taken apart, surgically, scraped, sanded, cleaned, and reassembled. As soon as one joint would be repaired or stop hurting, the pain would simply travel to another joint. There are no great drugs for it, either. Lots of “okay” drugs, and a million snake-oil home remedies, which most patients become desperate enough to try at some point. “Raisins soaked in Gin”, “Cod Liver Oil every night”, DMSO while it was still legal, you name it.

      My best advice would be to stop worrying about it/thinking about it; find a great rheumatologist via an Arthritis support group in your area, and be tested. By tested I don’t just mean the clinical bloodwork, but physical exams, etc. As I said before, I tested negative on my last RH test two years ago, and my ANA was normal. But, I’ll be tested again in a couple weeks, and also undergo some needle biopsies of these “rheumatoid nodules”. I’m definitely in some sort of flare…I ACHE in all my hand, wrist, elbow, and shoulder joints something horrible. The nodules on my hands are growing by the day. The ones on my elbows are growing, and I’ve developed more on my right arm. So, I kind of “backed my way in” to a diagnosis, I guess. As the neuro’s said, I had to wait for something to give a clear indication, and I guess these were it.

      I DO know that having one auto-immune disorder puts you at a higher risk for others, so again, I guess it’s possible. Sounds horrible…those two things in one body. But, both illnesses rely on depressing the immune system for relief, so maybe treatment for one would help the other…who knows?

      One of the most powerful lessons I’ve learned, and still work at, through all this is this: Don’t drive yourself nuts “what-if”-ing everything. If you think you have something, get to a doctor and find out. And, at some point, we all have to learn to trust the doctors. I kind of think that’s a combination of finding doctors we trust, and learning to accept what they say and give up some control. I know it was for me.

      Good luck…and go see a doctor!


    • Anonymous
      October 20, 2010 at 7:22 am

      Thanks for the good advice. I will get to a rheumatologist as soon as possible. I am a great “what if” obsesser and have always been a control freak. I am working on it, but it’s challenging to change a lifetime of mental conditioning. I’ll let you know how things turn out.

    • Anonymous
      October 22, 2010 at 1:31 pm

      I, too, am a great “what-if” type person…and also am working on controlling it, so I know what you mean. Many of the classes I’ve been taking lately are trying to convince me of the importance of accepting the present, and to live fully in it. Not trying to affect those things that are out of my control, you know? Like you said, though…it’s hard to change a lifetime of conditioning, but I’m learning that it can be done…good luck!


    • Anonymous
      October 22, 2010 at 11:11 pm

      Hey Elmo –

      I’m glad you are close to getting a dx, even if it’s not a great one. At least you will have some answers. Fingers crossed for you! I agree that you need to find a new PCP…the guys sounds like a jerk!

      And I wanted to add that I’ve never seen a posting with fees for paperwork on it at ANY dr’s office I’ve ever been in. Emily was seeing 5 dr’s at one point & not a single one of them had that. I’ve had dr’s calling around to find a dr for Emily & they have spent HOURS of their time doing so & didn’t charge a dime.

      I have 2 dr’s myself (PCP & gynecologist) and neither have that posting either.

      Some dr’s will charge you for copies of your medical records though. That’s just because the cost of the paper & ink adds up quickly though.


    • Anonymous
      October 23, 2010 at 1:20 am

      [QUOTE=Emily’s_mom]Hey Elmo –

      I’m glad you are close to getting a dx, even if it’s not a great one. At least you will have some answers. Fingers crossed for you! I agree that you need to find a new PCP…the guys sounds like a jerk!

      And I wanted to add that I’ve never seen a posting with fees for paperwork on it at ANY dr’s office I’ve ever been in. Emily was seeing 5 dr’s at one point & not a single one of them had that. I’ve had dr’s calling around to find a dr for Emily & they have spent HOURS of their time doing so & didn’t charge a dime.

      I have 2 dr’s myself (PCP & gynecologist) and neither have that posting either.

      Some dr’s will charge you for copies of your medical records though. That’s just because the cost of the paper & ink adds up quickly though.


      Perhaps it’s because I live in an area that has a high percentage of winter visitors and elderly. I am also in healthcare.

      Just because you haven’t seen one (there is is one in all 14 of my Drs offices) it doesn’t mean they don’t exist. Just as it doesn’t mean they don’t charge or aren’t available in other parts in other country if one were to ask.

    • Anonymous
      October 23, 2010 at 1:53 pm

      [quote=jdunk]Perhaps it’s because I live in an area that has a high percentage of winter visitors and elderly. I am also in healthcare.

      Just because you haven’t seen one (there is is one in all 14 of my Drs offices) it doesn’t mean they don’t exist. Just as it doesn’t mean they don’t charge or aren’t available in other parts in other country if one were to ask.[/quote]

      I’m just saying it doesn’t happen here in MI.

      Maybe dr’s with high majority of elderly patients on medicare and such think it’s ok to charge to fill out the paperwork but I would have to disagree with them. I feel that is part of their office visit charge. Emily’s neuro charges $200 for an office visit & he’s with us for maybe 10 minutes every 2 months. So if I need him to fill out some paperwork then he better do it & not even think of charging me for it. Same goes for the PCP, who charges $70 for the office visit. He’s with us about 15 minutes for the yearly exam & less than that if I take her in when she’s sick. I don’t think it’s too much to ask to have them take 5 minutes out of their day to fill out some papers. I actually feel very bad for those people that do have to pay for it.


    • Anonymous
      October 24, 2010 at 3:34 pm

      In defense of the drs, an appropriately filled out FMLA or SSI does not take 5 minutes.

      Yes, I agree, it would be nice if they would do it without charge here as many are strapped by the additional charge.

      I also had 2 drs testify in court for me, that didn’t charge anything and a charge was never discussed..That sort of thing is their professional liability, but paperwork isn’t apparently seen that way in this area of the US.

    • Anonymous
      November 3, 2010 at 4:01 pm

      I just received word yesterday that my Long-Term Disability application was APPROVED!! ๐Ÿ˜€ WHOO-HOO!!! On the first try, to boot! They stated that they will require me to file for SSDI, and that if approved, they will pay the difference between what SS pays, and what this policy is supposed to pay for 4 years.

      That makes me ask…for those that are more familiar with SSDI…I’ve been told by several attorneys locally that they won’t even talk to me about a SSDI application until I’m grossing less than around $960 per month, but the insurance company seems to think you can draw both a Long-Term Disability from a private plan AND SSDI at the same time. Anyone have any experience with that, and can offer any insight? I’m guessing because the LTD payments are “earned income” that perhaps they’re treated differently? I’ve got an e-mail off to a local SSDI attorney, waiting to hear back. I’d be interested in any suggestions, stories, etc.