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small fiber neuropathy
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LoriAAllen posted:
After three years of looking for a answer to the severe pain I've been having in my hands and feet, I finally was diagnosed as having Small Fiber Neuropathy at the Mayo clinic. They did a thermoregulatory sweat test that showed distal sweat reduction. I've lost my job, i almost lost my sanity and three different neuros that I went to in my home state said my problems were psychological. Having a name to give the pain helps tremendously but my question is...what now? they've run all the tests they can and can't find an underlying cause. In the few weeks since I came back from mayo my symptoms have gotten worse. I've lost most of the feeling in two fingers of my left hand. The neuro at mayo said i don't really need a neurologist becausae if an underlying cause isn't found pain mgmt is all that can be done. But shouldn't there be a neurologist monitoring the progression? So far I just have sensory and autonomic symptoms but what if it progresses to large fiber neuropathy? I feel like I've been cut adrift just because there's no treatment. There aren't many neurologists left in the state that i can go to because i'm not returning to any of the ones who let me down before. I would be too resentful. If they would have tried harder to dx me over the past three years I would have received company provided disability benefits and wouldn';t be in bankruptcy right now. Basically my question is "what now?" I've been dx, it IS progressing, there ISNT an underlying disorder. Do I just have to quietly wait while I lose my ability to feel?
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Lifes responded:
Do you primarily have numbness / loss of feeling? Or do you have a combination type with burning, jabbing, tingling, etc. etc. etc. along with the intense pain that neuropathy causes?

As far as a cause, is it primarily in your hands and fingers? If so, did they check your cervical spine?

You really should have cervical MRI for upper body neuropathy; Lumbar / Sacral MRI for lower body neuropathy. Blood tests including A1C for borderline or full diabetes. And you should think back about ANY injuries you have had previously. Even a small injury can lead to neuropathy.

I know what it is like to have doctors fail to help. Saying, "You're nuts" seems to be easier than actually being a doctor and looking for causes. I'm ready to write to all the docs who failed me, but I am refining and editing what I want to tell them.

Ask about Lidocaine 2% cream... it helps reduce the pain, although you'd need to be careful to not get it in your eyes or mouth from having it on your fingers.

I'm sure you've been told already but... sadly there is no cure for what ails you and I. Neuropathy is not helped by narcotics. You could try Lyrica or Trileptal for pain but both must be taken regularly, and likely long-term.

I'm sorry you've had this happen to you.

Lifes
 
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LoriAAllen replied to Lifes's response:
I have jabbing, tingling and burning so bad in my feet that i put cold wet towels on them. The numbness has all come about the last few months. The tops of my toes have no feeling at all and now the two fingers of my left hand are numb but do still have some touch feelings, they just feel "asleep". I've had all the blood tests and recently even had an oral gluclous tolerance test looking for prediabetes. I've had 4 mri's in the last three years, mostly because I have an anrold chiari malformation of 1cm that at first they thought could be causing the problem, but then determined that it wasn't by doing a CINE MRI that checks the flow of spinal fluid. You're the second person to suggest the lidocain cream, so i'll be asking for that next week. I also have some letters written to the drs that failed me so badly. I can understand their failure to dx sfn, because it's hard to dx, but the jump to pschosymatic causes was unwarranted. I actually went to a neuro pschologist that ran 7 hrs of testing and his conclusion was that I was NOT exaggerating my symptoms, and since that's his field of specialty, then they should have tried harder. I went to a neuro for a "second" opinion and she was going to do blood work and emg and nerver conductions, and I mentioned that in 2007 i had them done at a different neuro and i gave her permission to call him for the results. Fifteen minutes later she came back in the room and told me she agreed with him, and basically showed me the door after a very brief exam. I'll never forget the smirk she had on her face after talking to the first neuro. I plan on complaining to the AMA about the first neuro interfering with my right to a second opinion, and I'm going to ask her for a refund, because she didn't do anything. When a person is having medical problems...any kind of medical problem, the last thing they need is to be humiliated by the drs they go to for help.
 
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susiemargaret replied to LoriAAllen's response:
hello, lori --

i am always tempted when i see a second dr to give only the vaguest info about what other drs have said. otherwise, they do as your second neurologist did, which is to rely on the first neurologist's findings instead of tackling your problems from scratch.

if all a patient ever got was, "i talked to your first neuro and i'm not going to do anything different, so please go away now," there would never be a reason to go to a second neuro, but they don't seem to understand that. unfortunately, i've never found any esp effective way around this.

as for complaints about either dr, be sure to send them also to all of the state licensing boards where each dr is licensed to practice (call the dr's office to get this info). sending complaints to the state licensing boards may be more effective than sending them to the AMA, which has no regulatory power over drs and whose interest is that of drs, not patients. there may not be any immediate action with respect to your complaints, even from the licensing boards, but if enough patients complain about the same thing, the licensing boards will eventually investigate.

-- susie margaret
 
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Lifes replied to susiemargaret's response:
I heartily agree, Susie. Patients are eager for answers so when a previous doctor *seemed* to give a reasonable diagnosis that *seemed* to support our credibility, the patients will quickly say, "Call him, call him, he'll tell you... (there IS something wrong;; I am not crazy;; he believed me)! However, as too many people figure out, what a doctor SAYS to a patient or a favorable demeanor and attitude can often be the exact opposite of what they THINK about a patient and write down.

MY experience is that the more friendly and believing a doctor SEEMS, the more the patient should proceed cautiously. I know that statement sounds like overkill or paranoia, but I strongly recommend that every patient request a copy of doctor's notes and all communications made to other health providers, so the patient can see for themselves what the doctor wrote---despite what the doctor said. It will often not match what he writes in a record.

As for complaints to Boards, though, I hesitate. Patients are led to believe that Licensing Boards are benevolent entities eager to protect patients. However, it's a closed informational system; patients report but are not present to hear Board discussions. Unless the error is so horrible, so outside the standard of care, or concerns a doctor's "attitude" or "bedside manner", Boards often do NOT react as patients hope they will. Patients must remember that some physician attitudes are ingrained from medical school and residency---such as patients in pain must be regarded suspiciously lest a true "drug seeker" fool the physician into giving something stronger than an aspirin! Attitudes that women are hysterics are still COMMON among physicians. There are so many other examples. Patients can see how doctors really think by looking online for journal problem patient or journal complex patient. GOMER attitudes are still quite prevalant-- physician shorthand for "Get out of my emergency room" for patients that doctors believe are drug-seeking or hysterics with nothing wrong. Other acronyms or "defined meaning" words are used in office or hospital records, or spoken to patients, such as "Your symptoms are complex indeed, young lady!" said with even a friendly or sympathetic tone. "Complex" is not patient-friendly; quite the opposite, it means, "you're nuts" or "I don't believe you."

Doctors have that "thin scrub line" attitude like police have the "thin blue line"-- one physician will never challenge or purposely contradict another physician. I'd love to hear how this attitude is taught and re-enforced in medical school, because it becomes deeply entrenched. It's easy to understand why it becomes so easy to follow; in a business that relies partly on referrals, what physician wants to offend another physican by contradicting previous findings. To contradict may mean being black-balled among other physicians, so new docs learn this "rule" very fast!

I'll get off my soap box. But I strongly advocate to get one's own records and especially the doctor's notes to read what a doctor actually thinks. Don't be seduced into thinking that a seemingly understanding physician is one who writes the same things as he or she says to your face. AND once any doctor writes with negative comments, expect all other physicians to adopt the same beliefs about you, whether true or untrue.

This is one reason that computerized records make me so nervous, but the government is strongly pushing for that type of record-keeping by 2012. When in full use, once a patient has had one doc indicate that nothing is wrong, no patient will ever be able to keep pushing for another doc to look further at what might be wrong. Scary!

Lifes
 
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susiemargaret replied to Lifes's response:
hello, everyone --

i agree 100% with the comments that lifes made about complaints to licensing boards.

the reason i offer that suggestion to people is because otherwise i would collapse with despair that there is no way to make anyone pay attention -- short of malpractice, and usually not even then, except in an infinitesimal number of cases -- when drs treat patients frivolously.

oh, dear.

-- susie margaret
 
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LoriAAllen replied to Lifes's response:
It's funny (not really) but I've had the opposite experience.
Before I went to Mayo I went to every dr that I had seen and got copies of my file. Their notes were so caring and professional while during my visit they were rude and condescending. Their notes weren't even close to what the visit was really like. I was going to a rhuematologist that transcribed his patient notes while the patient was still in the room. I thought that was annoying because it's hard to ask him a question while he's doing that, but now I think it's a great idea, and all dr's should be required to do that so they can't put a completely fictional visit in someones file. I was in horrible pain, lost my job, unable to get disability because there was no dx and to add salt to the wound, I paid someone to humiliate me. Now that I know that they were wrong, I want them to also know that. I want them to remember me, remember how I left their office in tears, and if I cause them enough pain and humiliation, maybe they will think twice before they subject another patient to that kind of treatment. Thanks for the advise about the licensing boards, I'll definitely call their office and get that information. I plan on carbon-copying all the letters directly to the three neurlogists. Probably send the certified mail cuz that'll get their attention. I know I wont get any financial compensation, but they ARE going to know that they were wrong. The rest of the working world has to learn from their mistakes and I don't think drs should be exempt from that.
 
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rhondafox1959 responded:
Lori, I feel your pain. I didn't know what was happenng to me January 2010 of this year. I simply woke up one day left hand burning, eventually next couple of daYS RIGHT hand burning, then feet (both) and now progressing up my leg with this constant painful severe burning. Like you I went to the Cleveland Clinic, finally diagnosed me (took all my $) then said bye bye no treatment!! I felt abandonded...still do. Like you, lost my job, and am in financial ruin...Barely have enough strength to get from the bed to the couch...life is so painful. I feel severely depressed. I am on neurotin, tried nerve blocks, tried Ketamine treatment, nothing helps, nothing. I am going to a pain management doctor, that's all I can do. When you find the anser to your last question, let me know. I too feel what now? What am I suposed to do?
 
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Lifes replied to rhondafox1959's response:
Neuropathy (small, large fiber, it doesn't matter the kind or the cause) is sooooooooo exquistely painful that NO physician can even imagine what everyday life is like for patients.

I can relate because I've lived with this horrific pain for 11 years now. Mine started in my groin, the area covered by the underwear elastic and the pain would intermittently travel up just one side of my vagina and extend into the perineum (the skin between the vagina and anus). Talk about "it's all in your head" condescending comments! I went to Cleveland Clinic--what a joke! I went to University Hospitals-- not much better reactions there. They 'made' me go to a gynecologist to "prove" it wasn't a gyne problem---then dismissed the report of "nothing found". I, too, went to a neuro-psychiatrist to 'prove' it was not psychological, but that did nothing to change the opinion of medical specialists.

For Rhonda, with symptoms starting in January, first thing I'd wonder is if you'd been shoveling snow (points to shoulder causes) or if you were a typist (carpal tunnel causes).

Regarding reimbursement via Worker's Comp for Lori, try to set that anger aside because even if doctors had diagnosed you, WC is NOT for workers; WC is to protect companies. WC would have put you through HELL to make you prove your condition....only to rip your claim to pieces. If you think proving symptoms has been hard with your doctors, it would have been (and still is) thousands of times harder to convince WC of injuries. Bottom line: you would have gone bankrupt sooner but endured much more stress and with hopes dashed for any payment.

"Treatment" is only through medication management. Trileptal might give better results than any other meds. Lyrica has given good results to some. One 2004 study showed that Neurontin (Gababentin) gave no better relief than a placebo. Some older anti-convulsants can be tried but results are mixed. All of these except Lyrica are anti-convulsants and no studies have been done on potential brain changes in persons who never had seizures; the relief though outweighs possible risks.

Don't try narcotics--they do NOT touch neuropathic pain at all but can damage the liver. Over the counter pain relievers are not much help either.

I know it is terribly depressing to experience this condition. You can read one of my posts on this exchange when I was really bad. Luckily, I mentally bounce back quickly. It is hard to figure out what to do with life when it is full of pain, but it will help when you can find a new direction, a new purpose. It won't fix the pain, but it will give you the will to keep living. Think about what you most enjoy, what gives you some satisfaction, and think about your talents, skills, and interests. What you choose to do might be totally different than anything you've ever done before but it's important to find some activity you enjoy. What I do now is not my former career, but close enough to give me some satisfaction. Don't forget volunteer activities which can lead to a job sometimes. If you can't write/type, can you read to nursing home patients once a month? Can you teach someone to read at a homeless shelter? Can you use the phone -- maybe call shut-ins or answer calls at a "help hotline"? Can you spread awareness about the types of neuropathy in seminars at different therapy agencies/offices and charge a speaking fee?

There is "life" even when a person lives in the kind of pain we each endure. You'll need to look deep and find your new role, though. It can take up to 5 years to adjust to chronic illness and discover your new life.

Lifes


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