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Old 04-02-2015, 04:50 PM #21
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I feel fortunate, however, that my neurologist kept reinforcing, "Don't think you're crazy. This is really happening to you, but the problem is we just don't know why."

My neurologist says the same thing. He tells his patients he knows they are feeling the symptoms but doesn't know what's causing them if he's run all the tests. I guess with the idiopathic PN science doesn't have an answer at this point.
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Old 04-02-2015, 05:05 PM #22
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Before my MRI I was at my neurologist's office and I mentioned MS. He said honestly it's almost better to have MS than idiopathic neuropathy cause with MS they know what's happening physiologically.
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Old 04-02-2015, 06:49 PM #23
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Usually a specialist will not refer to another.

If one specialist discovers that there is something tangibly wrong, they may make that referral especially if they have that a doctor within their medical system. My neuro referred me to the ENT dept when they found my Nystagmus.

However, I don't think this this commonly happens.
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Old 04-02-2015, 07:02 PM #24
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With me, it's not just stress and anxiety that worsens my symptoms, it's excitement as well. Whether it be positive or negative stimuli, I have to continually tell myself to calm down lest I pay the price.

I feel fortunate, however, that my neurologist kept reinforcing, "Don't think you're crazy. This is really happening to you, but the problem is we just don't know why."
I also can't be "too excited or silly" or upset, scared, sad, or angry. If I laugh, I have get nerve pain in my ribs and abdominal muscles. Its unbelievable. I'll be laughing and then the pain comes and I'll feel hurting and exhausted as though I could pass out. Its a cruel reminder in the times that I lose myself that I am brought back to this disorderly state my body has me in.

Then there are the other emotions.....

If I'm sad, I'm weak.
If I'm angry, I'm sad.
If I'm hungry, I'm shaky.
If I'm tired, I'm shaky.
If I'm scared, my pain is out of control.
If I'm having a lot of pain, I'm scared... and then the pain gets worse.

State of mind has a profound effect on the nerves especially.
I'm improving my meditation practice and getting better at letting the emotions pass through.
Not easy.

Also, OP,
Two years ago when my symptoms began, I went for a full workup and all they could find was orthostatic hypotension. After a few weeks of knowing something wasn't right, the results that came back were not a big deal so I felt less scared. I convinced my self that I must be going through a sudden anxiety phase of life and for a while I thought my symptoms were gone. It is easy to see now that I was in denial but even so, it was better than living in a state of fear.
If the symptoms didn't progress and get worse then maybe I could have continued acting like bothersome things weren't going on. I hope for you that what you have is minor and that anxiety is just making it seem worse.
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Old 04-04-2015, 12:41 AM #25
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Hi there,
I agree that maybe starting all over with another pcp could be worth it, if you can.
One of my greatest disappointments personally was how I was disrepected as a neuropathy patient.
My husband received more respect as my caregiver (unable to drive and on major medication now due to the sfn).
I had to constantly appear like I was not in agonizing scary nerve pain.
Is there anyone who can also go with you to your visits?
I am so sorry that you are being treated this way.
thank you for the response, I went onto another forum, where i heard a person who was totally ignored by thier doctors, despite that she had pain and osteoperosis, the doctors think she is a mental case, and she said they think she is only looking for attention, or for drugs.
Thats what my pcp thinks, she dint think its lymes disease, i mentioned a month ago. i forgot to mention my pins and needles have now some random joint pains, and cold feeling, and internal loss of sensations are still troubling.
I feel like she was being dismissive/ignorant to my symptoms, because i told them about my kaiser records, she went through all 79 pages(i never knew it was that extensive), and stated that i went to many different specialists(2 different audiologists, 2 different ent on multiple visits(nosebleeds), A neuro doc(movement and disorder specialist,),multiple pcp visits, possibly an oncologist, because i thought i had lymph glands that were swollen between my hips(2007), dermatologits multiple visits(alopecia areata, steroid injections), had an mri ekg(checked by a cardio and pcp). of course it all happened between 2012 dec and 2013,summer.(some of the visits were years before though.

She called out of the blue last friday, and dismissed my lyme assumptions, and keep pointing it, from her own words(can it be from stress) she said the same exact thing more than a month ago. I am being treated like attention seeker or a drug junkie looking for drugs. I have seen your posts, and it took you so many tests and docs to finally get to the actual diagnosis.
One of my ENT at kaiser was the most ignorant of all the docs, he totally dismissed i had any nasal problems, from nosebleeds, when i switched ent, behold she found the blood vessel that was the cause, in addition allergies(i supsected for many years). This took 4 years to diagnose.

@utgrad, i dont see how your neurologist thinks MS is better than PN, MS is very debilitating with multiple neurological symptoms. and it requires immunosuppresive drugs. I think that doctor is ignorant of ms sufferers.
@glenntaj, thats what they seem to think, I think it gives them an easier scapegoat, or they dont have to try to hard with your case. Its easy to label someone has mental problems, then actually find out if they have the cause of neuropathy. some doctors are blatantly lazy, and dont want to do extra paperwork.(Doctors have to do write up on patients of every visit, what type of tests they issue, drugs prescription, examination, what did they find,,,etc)
@echoes long ago, I HAVE heard of anxiety worsening symptoms, but never causing it. My doctor seems to think like that though, anxiety,strees depression=cause of neuropathy, or percieved neuropathy.)

@Healthgirl, im pretty sure my symptoms are not mentally related like the pcp said, because i developed it suddenly while under the effects of diphenhydramine, dxm, paracetimol, phenyleprine, and it progressed to full myclonic jerks(of legs with restless leg syndrome),(shuddering without a stimulus), and hypnic jerks, random and increased frequency of twitching. I was not even stressed. loss of sensations i cant even fake it even if i wanted to, like people with diabetic neuropathy, they lose thier sensations of thier organs. I even got so bloated, from eating certain things, i couldnt even sleep. This happened all at once, though the loss of sensation i noticed weeks later after loss of smell. Loss of sensations is anything internal, this includes sensations that people take for granted,(tiredness, out breath feeling,,etc)

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Old 04-04-2015, 07:21 AM #26
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i think it is awful the way you are being treated. you wont be able to establish any type of working relationship with a doctor like that. i had a really good pcp for 10 years who moved to ohio in 2009. since then i have had 5 and this last one i dont think is going to work out either. i dont know where you are from but in the US in some parts of the country a psychogenic diagnosis is much more common than in other parts. In the south particularly it seems to be used more than anywhere else. In my opinion very innaccurately.
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Old 04-04-2015, 08:52 AM #27
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Without a doubt, the anxiety that I have experienced has been a direct result of the PN, not the other way around.
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Old 04-04-2015, 03:02 PM #28
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Originally Posted by echoes long ago View Post
i think it is awful the way you are being treated. you wont be able to establish any type of working relationship with a doctor like that. i had a really good pcp for 10 years who moved to ohio in 2009. since then i have had 5 and this last one i dont think is going to work out either. i dont know where you are from but in the US in some parts of the country a psychogenic diagnosis is much more common than in other parts. In the south particularly it seems to be used more than anywhere else. In my opinion very innaccurately.
I live in California, MEDI-CAL system, im in welfare, very poor healthcare network(its comparable to the NHS, appointments are months away. if i had the money for insurance i would leave right away. She is just waiting to diagnose me with a mental condition, she blatantly stated i might need a "therapist" this would give a further indication that she doesnt believe in what i have is real. Im pretty sure she made up her mind of what i have in febuarary when i went to see her. i CAN feel anxiety mentally, but i cannot feel it literally, within my body, because thats the part im trying to find out.
I dont think doctors get it that PN is not a result of Mental disorder, They think because PN is not a "visible" disorder, they assume the patients are making it up, to get attention. I would switch providers, but i heard horror stories about ANthem BLUe partnership. She also kept trying to digress from my real reason being there, and trying to make a "mental" diagnosis, by asking question about personal info. one last insult is that, when i explained all my symptoms were neurological, the only specialist she would do is an opthamologist, she think my symptoms were real enough to have a neurological or rheaumtological consult.
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Old 04-04-2015, 06:02 PM #29
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Without a doubt, the anxiety that I have experienced has been a direct result of the PN, not the other way around.
Absolutely for me too.
I didn't understand why all of a sudden after 38 years of life, I was suddenly having symptoms of panic and anxiety.... dizzy spells, palpitations, tingling, and terrible orthostatic hypotension (I didn't realize were my autonomic system under attack). I was so healthy and fit when this started happening that I decided it must be a sudden anxiety disorder. I figured it was hormones, stress....whatever. I am fortunate that the doctors that I have been to have taken me very seriously. Only one brushed me off and said "fibromyalgia" was my diagnosis. The other doctors who diagnosed me and who see my lab reports say that I have acquired secondary anxiety due to nerve pain and autonomic dysfunction.
The brain fog, low blood pressure, and delayed cognitive function that I have at times and the shooting pulsing nerve pains and weakness do cause me to be anxious. I am now an anxious person because of this. It is hard to work on that when it is being caused by a physical manifestation, although I still believe so much in the power of the universe and the mind that I still meditate everyday and feel hopeful that things will work out ok.
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Old 04-04-2015, 07:54 PM #30
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i think it is awful the way you are being treated. you wont be able to establish any type of working relationship with a doctor like that. i had a really good pcp for 10 years who moved to ohio in 2009. since then i have had 5 and this last one i dont think is going to work out either. i dont know where you are from but in the US in some parts of the country a psychogenic diagnosis is much more common than in other parts. In the south particularly it seems to be used more than anywhere else. In my opinion very innaccurately.
Yes, down south is a beautiful place, but it is still backwards with diagnoses!

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