AnonymousJuly 5, 2010 at 1:28 pm
I have been blessed to have so many on this website support me throughout this process, even though I have not been diagnosed with CIDP, that I wanted to post an update. It will be a combination of a “vent”, include a little “rant”, and hopefully offer some insight to others who are still seeking a diagnosis. It will probably be long, as I tend to be “wordy”…so feel free to click the “X” box anytime, if you lose interest.
One year ago, after about 5 years of complaining of arm weakness and nerve pain down both arms, I had my “second” EMG. (My first was right before my surgery to repair a cervical disc that was herniated) During this EMG, it was found that I had decreased velocities in both arms, prolonged f-waves, some Carpal Tunnel in my right arm, and showed evidence of early demyelination. Rather than being “freaked out”, I was ECSTATIC! Finally…FINALLY…I had some “proof” that something was NOT right with me, and that this wasn’t all “in my head”. About two months later, I had another EMG, this time on my legs, which showed some problems with the nerve conduction in my legs, but showed only sensory loss, not motor. My arm EMG’s had shown mostly sensory, but “some” motor loss, as well.
I was referred to a local neurologist, an MS specialist, who basically wouldn’t even take the case; threw his arms in the air and said that whatever I had it wasn’t in his specialty, and he referred me to the local expert at the University of Utah. This physician wasn’t in my insurance “network”, so I saw one that was. My second neurologist was, in my humble opinion, a money-seeking quack/hack. My first clue to this was when I walked in his office and there was a big sign…CASH ONLY! NO CREDIT/DEBIT CARDS…NO CHECKS ACCEPTED!”. What kind of doctor’s office won’t even take debit cards?!?! Anyway, this neurologist suggested that my problem was either sleep deprivation (he also ran a sleep clinic and wanted me to schedule a very expensive “cash-only” sleep study) or a result of being “borderline obese, and thus, the result of some sort of pre-diabetes condition”. I’d already had a sleep study done a couple years ago, and it found no evidence of apnea; I had a “Glucose Tolerance Test” after this visit and passed “with flying colors”. I’d also add that I am 6’2″, 225 pounds, and a 38 waist…so, I have a little bit of a gut, but I’m not what I would consider “borderline obese”. I’d also been in the best shape in years, as my wife and I had been making major changes to our lifestyles…working out 3-4 times per week, eating more naturally, etc. I had just lost about 30 pounds, so him saying that kind of “stuck a nerve”…pun intended.
After this, I sought a different neurologist; the one I found was a lady that taught at the U of U, was trained in their techniques, and seemed reasonably adequate to give a diagnosis. She performed her own EMG’s (limited tests on one arm and one leg) and found that she disagreed with the original test results somewhat. My interpretation was that there was a bottom line for “normal” results…the first neurologist found me just outside that line, while this doctor found me just “inside” that line. She, too, referred me to the University of Utah neurology department, proclaiming that they were the “experts” in this type of illness.
I saw that neurologist, finally, about two months ago. He took one look at me, did an EMG, and proclaimed that he could find NOTHING wrong, all EMG results were perfectly normal, and even said that I didn’t even have a “Peripheral Neuropathy”, let alone CIDP or one of it’s variants. During this visit, he asked me to “start at the beginning”, which I did. BIG MISTAKE! The result was that he focused solely on a very minor complaint, from almost ten years ago, and I never felt like we got around to the major complaints I’ve had over the past year. He stated in his report that he felt there was nothing to suggest “small-fiber neuropathy”, but admitted that the only conclusive way to tell would be a skin biopsy. He said he could do one, or he felt that the referring neurologist could do it; she doesn’t feel adequate to do it. Again, he’s not in my “network”, so if I have him do it, I will have to pay a LOT of money out of pocket (and my pockets are pretty much limited to lint lately…)
Last month I spoke to a friend, who’s daughter had gone through many of the same things I have been. She saw a neurologist who she felt was great, and was willing to do whatever it took to find a cause. She ended up having a PFO, or hole in her heart, which was fairly easily remedied. My visit with him was less stellar…he looked at my records, did the requisite “strength test” that all neurologists do, and said that whatever I have is not neurological, but probably musculo-skeletal in nature. One interesting test he had me do, which I hadn’t been asked for before, was to walk heel-to-toe with my eyes closed. I couldn’t go one step without falling over! Then, he proceeded to discount the results of that test. My thought was “if it isn’t going to count for anything, why the HELL have me do it?”
So, I’ve seen 5 neurologists in one year, and each subsequent visit leaves me more frustrated. Each new neurologist seems to lessen my diagnosis, rather than confirm anything. I explain to each that I’m not there because I dispute the diagnoses of other doctors, but rather that I don’t feel I’ve gotten any diagnoses to dispute. None could even agree on what I DIDN’T have, let alone what I DO have….
I feel I have gained a “reputation”…they look at my records, look at the number of doctors I’ve seen, and quietly, in their own minds, decide that I’m a hypochondriac or problem patient, and make their minds up before they ever start the exam. I don’t “look” sickly…I don’t use crutches, wheelchair, or walker…although I do have an unusual gait because of the pain and stiffness.
Several months ago, a few here suggested that I e-mail a couple of doctors for help. I, personally, have found no benefit to this approach, at all. I e-mailed the “wunderkind” at the U of U, asking for his advice; his responses all suggested he was quite put out by a patient actually e-mailing him directly and said that he thought I was being “well-served” by my current doctors. Of course, when his associate saw me, all he could do was bad-mouth the testing procedures of those other doctors, but then in the same breath would say that I should listen to them. ??? I also tried e-mailing Dr. Lewis, and basically got the same response; trust your doctors, and if you don’t, find new doctors.
I was referred to a Rheumatologist, and saw her last week. She conclusively diagnosed me with Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain Syndrome, which are all commonly referred to as “over-lapping” illnesses. She has suggested I start taking Savella, Amitriptyline, do water-aerobics, strength conditioning, PT, etc., and learn to live with these illnesses. I have started the Savella, and will start the Amitriptyline later this week.
When I asked her about other symptoms that are not typical of those three illnesses…decreased temperature sensitivity in my legs, loss of reflexes in my elbows, wrists, and ankles, and others…she said that “No”, those symptoms were not caused by any of those three, but she could offer no suggestions.
AnonymousJuly 5, 2010 at 1:29 pm
(my original post was too long, so this is the continuation…)
So, here I am. I’m about to quit my six-figure job because of the stress levels, and take a job paying about 1/5th my current income. I have been given a diagnosis that doesn’t completely fit, but have to accept it and do everything that is recommended in hopes that they’re right, and if not, then I can say I’ve honestly tried everything they’ve suggested. And wait. I told the rheumotologist that I had to have 2-3 weeks off of work, in the form of a short-term disability, because my 11-12 hour a day job was only making things worse, and that I need a break to “re-boot”. If I don’t take this time, I will end up being fired because I can’t meet their performance standards; if I DO take the time, I may be fired, with some BS reason behind it, simply because my employer is sick of dealing with this. I was “written-up” about three weeks ago and told that if my performance does not improve, I will be further disciplined, and subject to termination, within 60 days. Even though I’m approved for FMLA for up to 4 days per month (which is 20% of my time), I was told that I’m still expected to meet the full standards, and that our home office personnel people had determined that 4 days per month was not a large enough impact that I shouldn’t be able to meet the criteria. As a result, I have enlisted the help of a state senator, and am trying to get in to see a couple Labor/Employment attorneys to discuss this violation of federal FMLA laws.
My wife has been incredibly supportive, but I fear this is all taking a huge toll on her. She’s the one that told me to quit my job, because of the level of stress it’s causing, and its’ impact on my health, our relationship, our family, etc.
All I keep thinking about is the stories I’ve read here, and how this all sounds so similar to what others have gone through, only to discover…years down the road…that they were right all along, and that they do, in fact, have CIDP. I’m at my wit’s end. The main reason I agreed to start taking the Savella is because of its’ antidepressant abilities, and I recognize that I am starting to become depressed. Meanwhile, the fatigue worsens, my strength continues to deteriorate, and my hopes fade.
Wish I could be more hopeful and positive, but my experiences don’t support that. What I AM concluding is that God is using all of this to convince me that I need to make some serious changes in my life, get back to some values I may have sacrificed when I took my present job, and to help me get things back in perspective.
I don’t know what to ask you all for…probably prayers of strength and wisdom; I’m not the type that asks for prayers for healing…that kind of seems like telling God what to do, which is pretty laughable in my book. I would rather be able to handle HIS expectations, than try and convince him to meet mine.
Thanks for listening, thanks for your support; sorry this is so long and depressing. Any suggestions would be welcome.
AnonymousJuly 5, 2010 at 5:07 pm
The fact that you, along with a few others on this board can’t get a proper diagnosis and treatment for your illness is astounding, especially in this day and age.
Your case does sound like Fibro, but then again, what do I know? My information is basically from what I’ve read online about Fibro and from interacting with those with that diagnosis.
Being stressed is certainly not helping as I’m sure you’re aware. Nor is the fact that your employer is pressuring you. I realize you’ve written your state Senator, however, have you also considered contacting a state ADA representative? I’m not sure if FMLA varies by state, but it was my understanding that you get 12 weeks per year and that the employer has to abide by that agreement.
A bit of short term disability could work wonders and hopefully, you can reboot and regroup. Did the rheumatologist agree to write up a good reason for you to take time off?
I realize leaving a well paying job can be a tricky move, especially now, however, you need to do what’s best for youself and your family.
I pray that you receive a diagnosis soon and can start on a path to healing both physically and emotionally. I don’t intend for my words to sound trite, but they are truly from the heart.
AnonymousJuly 5, 2010 at 6:26 pm
Even my dear docs change their minds…about me, and after several years? I’m finding it happen more often. I tend to blame it on the phases of the moon [as in lunacy] myself. Or that another patient with some similar features to all mine has come along & stumped them, so they too quickly rethink their original diagnoses.
I’ve always gone w/the ‘We aren’t communicating well in my diagnosis so I’d like [B]your[B][/B][/B] opinion’ is the best way to go. Never bad mouth prior docs as it can come back to haunt you, say during a later ‘disability’ hearing of any sort [Those guys look at EVERY SINGLE piece of your med history on file that’s ever existed, if available!], ergo the caution. Altho I did speak ‘NO WAY! & Over my dead body!’ about receiving IG infusions at one practice, the doc I’d left for my current one…about all I’d heard of his poor IG practices and protocols.
It’s soo much more frustrating when an established and current doc starts ‘waffling’ on the diagnosis? Especially without any further testing to substantiate any change in the diagnosis.
I can’t counsel you about your job, other than only you can assess and value whether the ‘job’ is worth the extra aggravation it’s been contributing to your medical issues. There ARE times when money doesn’t assure health, tho at times it helps with all the testing for sure.
Your LIFE outside of work, and THAT quality? That is equally important, or should be. Getting this stuff and dealing with it can force you to sort out what IS most important in your life. And then get a handle on what IS most important to you and your family…but you most of all. Any ‘job’ doesn’t make you who you are or establish your overall worth! Sometimes your ‘worth’ is truly within YOU and that is key to how you go about attacking this in the future. Sit down with your wife and get her ‘take’ on this all, and how it’s affected her….She mite have some insights that you would be surprised at! It mite take a while to talk and sort it all out? But, you’ll get a handle on things once you work at it and sort lots out.
Keep faith in YOURSELF about the fact that you don’t feel well or right! Choose future doctors carefully, check out their medical training and any papers they mite have published-these can give you clues as to docs who are open-minded or not. I wish you strength, faith and hope! Homeagain
AnonymousJuly 6, 2010 at 12:06 pm
I feel for you. I am going through the same thing. I am on my 6th neuro and have seen one rheumatologist. At least you got somewhat of a diagnosis and recommendations from the rheumatologist and some meds. Mine wouldn’t even prescribe meds and told me to take melatonin for sleep and work out. Would not even give me a diagnosis. This last neuro was better, but I know what you mean about them looking at you like you are crazy. All of my tests are “normal” too. This last one gave me a tentative diagnosis of POTS, but there is no cure only treatment of the symptoms. I asked for B12 injections and was told no, you are taking the supplement. I asked what can I take for the pain, neurontin. I have been searching for answers for 6 months to no avail. This last neuro said that they are not even sure it was caused by the vaccine. I was perfectly fine before this vaccine. Now I have muscle and joint pain, rashes, headaches, tingling/numbness, lightheadedness, nausea, etc. and it wasn’t caused by the vaccine!!! Terrible fatigue and I struggle to get through the day. Have you considered Mayo? That is my last resort. Good luck, try not to give up hope and keep searching for answers. My sister’s husband has been plagued with issues for 15 years and just got a diagnosis of mast cell disease and has been told in the past that he needed psychiatric help. It is really eye-opening how clueless the medical prefession is and unwilling to help. I know that there are exceptions to the rule and I have read about them on here, but personally have not come across it yet.
AnonymousJuly 15, 2010 at 1:56 pm
Thanks for the supportive comments! I appreciate them, as well as the thoughtful suggestions, I really do!
It’s been a couple of weeks; my rheumatologist DID approve my short-term disability, and happily surprised me when she put down that I’d need at least 1-2 MONTHS off, instead of 2-4 WEEKS off! Made me happy…not my boss, but who cares about him, anyway?!? :p
I’ve tried the Savella for a couple of weeks, and had been on the 100mg “top” dose for about a week, when I realized it was causing more problems than it seemed to be solving. The worst, especially considering my current diagnoses, was insomnia! Imagine…a drug that’s supposed to help Fibromyalgia and Chronic Fatigue causing insomnia…and it’s listed as a “common side-effect”! Everything I’ve read says that proper sleep management is one of the most important things in dealing with these illnesses.
I’ve started water-aerobics, and am starting an MBSR (Mind-Body Stress Reduction) class tonight. That’ll be interesting! I’ve never considered myself a “Zen” kinda-guy, but hey, all sorts of new frontiers are opening before me! Before long I’ll have dreds, beads, and a beard…sitting on my back porch chomping on Granola! 😀
But, seriously, I’ve made some serious decisions, with my wife’s full support and partnership. I’ll be quitting my job before long…right now I’m planning on letting them pay for some “short-term disability” as long as I can get them to; I figure they played a big part in my getting sick, they can at least pay for a little bit of recovery time, right? I’ve also made a couple appointments with attorneys, have sought out some help from the state ADA office, have consulted with friends and friends of friends who have been down similar paths and am trying to glean everything I can from all of them. It seems to be taking a long time, but I’m slowly un-learning the horrible habits I’ve developed over the past few years. I’m becoming hopeful again, and starting to think more positively; I’m considering options that I NEVER thought I’d be open to; I’m slowly (painfully slowly, it sometimes seems) learning to relax again.
I probably won’t be around here a whole lot; I don’t have CIDP, so I don’t want to clutter up the boards, taking time away from those who really deserve your help. But I did want to say again, THANK YOU!!, to everyone who has been so supportive throughout this. There’s still a corner of my mind that thinks that my current diagnoses may not be my final diagnoses, and that something along the lines of CIDP or one of its’ variants may still be the cause, but, for now, I have to put that aside. I’m accepting my current diagnoses as fully as possible, and am going to put all my energy into getting better, or at least as “better” as I can be. It’s a little unsettling that everything I’ve read suggests that fewer than 30% of those with Chronic Fatigue are able to hold down a full-time job, but, that’s just a statistic. One thing I’m learning through all of this is to live in the “today”…I’m going to work towards being able to work full time in a low-stress, non-profit type position; if I find that I can’t work full-time, then we’ll deal with that when it happens. I HAVE to stop my horrible habit of constantly “what-if”-ing everything; it’s the number one cause of my stress.
I will continue to read, and if I feel I have something valuable to add to a discussion, I’ll probably throw it out there. God knows I’ve got a lot of experience with doctors, drugs, treatments, etc.; and perhaps I can help someone else who is still struggling with finding a diagnosis in my own little way.
You will ALL be in my constant prayers and thoughts! I wish only the best for you, and will continue to work as much as possible, from my little corner of the world, to help. Too few know about CIDP and its’ effects; I’m finding that CFS and FM are grossly misunderstood, and they’re “routine” compared to CIDP!!
I’ve been doing some reading, and a powerful quote from Warren Buffett presented itself to me a while back, which I’ll close with:
[B][I]“Should you find yourself in a chronically leaking boat, energy devoted to changing vessels is likely to be more productive than energy devoted to patching leaks”[/I][/B]
With love and hope to all…
July 16, 2010 at 3:47 am
Don’t give up. Could you change you insurance to a PPO instead of an HMO?
I’m sorry and I know there is a doctor out there who can help you.
I watch Mystery Diagnosis on television and have seen story after story where it takes so long for a suffering individual to get a diagnosis. It seem there are many uncommon diseases out there and so many doctors just don’t know.
You could have a rare variant of CIDP or something else.
An aggressive computer search of every one of your symptoms might bring up something.
I will pray hard for a successful diagnosis.
July 17, 2010 at 8:40 am
Elmo, you’re not cluttering up anything. We care! I understand you not visiting frequently, but PLEASE keep us posted on how you are doing. You can always turn to us for support, friendship and prayers.
AnonymousJuly 18, 2010 at 7:36 pm
You can teach us soo much about why we mite not be diagnosed correctly? And what we can do about it all.
“Getting it Right!” is medically far easily said than done. In your case I hope and pray that you are on the right track now.
As we learn from what’s Right? We all can also learn from what isn’t RIGHT!
As Casey Stengel said: It ain’t over ’till it’s over!
For us tho? We tend to start all over again, down a different path. May this path be the RIGHT ONE! Hugs and hope!
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