The pcp doesnt believe i have neuropathy, despite telling her all my symptoms?
 

BASICALLy i went to pcp at feb 2nd to see if she can do anything about my pcp, but instead she thinks its all mental problems, and she kept diverting the conversation towards a genetically cause as well. My symptoms began suddenly the month before that when i took diphenhydramine with some other otc.
This past friday she gave a call that i missed the appt in march 3rd(i did on the basis that she wasnt going to tell me anything different instead trying to get me to say things that i am mentally all in the head). She said in the call, that could this be stress related, and kept saying it keeps going away and keep coming back. She basically repeated what she said 2 months earlier, is it stress?
and apparently the mystery specialist was a Opthamologist, and not a neurologist doctor, do you think the specialist can refer me to a a rheaumatologist, or neuro doctor.

Burning bridges
 

If you skip appointments because you are suspitious of your PCP you might burn a bridge that you might need later. IMHO. I need my PCP to link my insurance to any other DR. As long as you are still getting referrals, it is a new pair of ears to hear you. Stress and anxiety can play a major role in neurological conditions but you are probably the best judge of how much you are being affected by these. Many have been funneled into the psychosomatic category and have to be calm and prepared for new referrals by focusing on physical symptoms that you deem the high priority. Good Luck, Ken in Texas.

We fully understand the HUGE frustration, to put it mildly, that the medical field does to us...I have to agree with skrp01, burning bridges can come back to bite us...One of my doctors INSISTED I was making things up just to be seen; I was so :mad: that I stopped seeing her. When I had to have a check up, I had to eat crow and go back to see her...and she was still a snub...she was like, look what we found wrong....what :eek: WE?! However, she was willing and able to send my records to whom I needed....Had I given in to her 'ways' fully, I wouldn't be able to have the reviews done in time....
The exasperation you are experiencing is REAL; with that being said, maybe it can help you move forward.....:hug:

life is too short for that kind of negativity....look around for another pcp

I'm a bona fide anxious hypochondriac so my focus on the PN made it A LOT worse. Now that I got a pretty good work up from a neurologist and nothing is showing like MS or nerve damage I've taken my focus off the symptoms. They've pretty much disappeared. Hope this continues!

I can say in my case focusing all day on the symptoms makes it 100% worse. With that said my case won't be the same for others.

I can tell you my pn is not stress or mentally caused, it would only be acute. They started on the same day few months ago when i took the anticholingernic drug, with other mixtures. i prefer not to see her again. I had doctor when i was originally at Kaiser permanente before i turned 26, in 2012, i went to see him (ENT), about what was the cause of nosebleeds, and if my septum needs fixing. I went there and waited for him, and before he came into the room, i noticed he was outside arguing with the nurse that i made an appt with him, and not a phone consultation first, he was ******. So he came in the room with that attitude. After he finished the examination(he only look in one nose and only the bottom part. He basically laughed me out of the office, that made me extremely angry. I had to nag my pcp to refer me to another ent, which actually found the reason behind my nosebleeds that i had been having for 4 years. allergies and a leaky blood vessel, So you see. i really dont want to go through another delay of diagnosis, when it can be easily found out. to this date my pn and loss of sensation never went away once(the pn only subsides alittle, but never goes away). i think she makes a habit to choose the easiest diagnosis, mental problems, one other doctors also had bad reviews on yelp, they complained about his ignorace to thier problems. hopefully i can use the specialist to refer me, if he or she says, i have to go to pcp to refer to a specialist, i am going to switch providers within the welfare system.

UTGrad in all of the years i have been reading this board, which is about 11 years, you are the first who believed that their PN symptoms were due to anxiety.

yup, that was pretty unusual. My pcp thinks im just hypochondria or "Stress" related when they cant find an answer to your neuropathy. Im pretty i cant fake loss of smell or taste, and neuropathy that develop new symptoms.
I mistakenly gave them permission to look at my kaiser records which showed numerous visits to different specialist within the span of 6 months and i have seen specialist in the past before as well(nosebleeds intestinal issues), because i had different concerns. Its like to talking to a wall when it comes to my pcp(welfare doc), as soon as i mention something she tries to change the subject altogether.

WRONG

I said anxiety makes them WORSE.

And that's IN MY CASE...might not be in yours

which is why i noted you were the first i came across
....its your case not anothers

No you said that I thought my PN symptoms were caused by anxiety which I never said.

You must not pay much attention cause I've been on here for less than a month and seen multiple posts that state anxiety can make the symptoms worse.

if you read my post correctly you would note i said you believe your pn symptoms were caused by anxiety. i never said you believe your pn was caused by anxiety. you said once your anxiety levels went down your pn symptoms have virtually vanished. Quote from 3-25-15 " So my EMG was completely normal and since my EMG and the normal test my "neuropathy" has pretty much lifted!
I hope it stays like this but it appears there is definitely a psychosomatic component to my symptoms. Worrying and focusing on it made it worse and forgetting about it makes is virtually vanish."

of course i have read of anxiety making symptoms worse but not to anywhere near the degree and quickness as has happened with you. I have never read of anyone attributing nearly the entirety of their pn symptoms to anxiety as you have.


on a side note i dont understand your hostility. you have a very abrasive personality. i wont get into it further with you here, though i could believe me.

Hi
I am going to have to request that this argument end please.
If members want to discuss the pedantics further, please do so in PM. Please remember the guidelines apply to PMs as well though

It is not fair to the OP to have the thread take this turn.

thanks

So sorry
 

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.:hug:

I'm sorry as well.
 

I was treated very poorly and disrespected by my HMO as well. And I'm a very calm, analytical, and emotionally stable person who isn't easily rattled. It can happen to anyone.

When you change PCPs, a good one will evaluate you based on what they see and believe. The won't go off another PCPs evaluation that your symptoms are due to anxiety.

And just to clarify--
 

--neuorpathy,as in "damage to nerves",is, in my view, very unlikely to be caused by anxiety; the mechanisms by which that would conceivably occur do not seem to have sufficient connection.

I don't doubt, though, that anxiety can be at the root of, or exacerbate, symptoms of parastheses, tingling, etc., that can be confused with those of neuropathy. But, of course, the same can be said for a lot of conditions that produce those kind of symptoms--calcium deficiency, peripheral artery disease, conditions of the central nervous system, hypoglycemia--in that these are not caused by peripheral nerve problems per se, but can cause symptoms that feel like such problems.

I also don't doubt that anxiety can make neuropathy, or these neuropathy like symptoms, worse, at least perceptually. What especially contributes to this, though, is the tendency of far too may laypeople and physicians to very quickly go to a "mental" explanation for such symptoms that seem to have no directly discernable cause. There are a lot of studies out there that indicate that while a certain percentage of neuropathies remain idiopathic, full investigations into cause can cut way down on that percentage, but often, due to time, knowledge limit and cost/insurance considerations, such full investigations are not undertaken.

Yep I concur that anxiety can't "damage" the nerves but it can heighten the perception of tingling and pain.

Usually a specialist will not refer to another.

I am so sorry that the stress/anxiety card keeps getting played.

It is a laziness on the clinician's part.

I once was able to fall asleep in five minutes and sleep for 8-9 hours straight without a hitch.

Those nights are gone and waking to nerve pain and tingling is a nightmare in itself without having supportive people to help you.

As another suggestion, you might try this website:

https://www.ratemds.com

I have found that most of the reviews are close to my experience with the physician's and other providers I have seen. There is one fantastic one that helped me that was rated the same way.

Hope you get some support soon.

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."

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.

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.

It depends...
 

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.

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.

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)

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.

Without a doubt, the anxiety that I have experienced has been a direct result of the PN, not the other way around.

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.

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.

Yes, down south is a beautiful place, but it is still backwards with diagnoses!

:eek:

not like the north is any better. especially welfare system, is backwards compared to insurance. in some insurances or HMO, GROUPS, they have docs that consult each other, if they see yours is a complex case, though there are problems with this as well. i felt like it was slap in the face when she told me ," if everything comes back normal, ill recommend a therapist", i was thinking where is this coming from, how did we get from talking about my neuropathy to this.

The South has some of the top hospitals in the nation. I live in the Nashville area and Vanderbilt Medical Center is an excellent research hospital. Sure there are other facilities that don't have the resources and same levels of expertise as larger metro areas but that applies to anywhere in the US.

I dint like how the doctors, 1st assumption and diagnosis was to give me a therapist, and relate all my neuropathies as mental problems, attention seeking, druggie.
My experience was just awful with her, she is nice, but she deadest on implying i have some kind of mental problem. Multiple times on the visits she was not interested in the neuropathy i was complaining about, she was more interesting in finding a way to put me on the spot, saying i have mental conditions, asking about family problems, life problems, I got nowhere in the neuropathy issue. She called last week to quickly dismissed the LYME diagnosis, did not mention any other tests that could be done. The final insult was that she did not believe my loss of sensations and neuropathy existed so she gave me an eye specialist, which i did initially complain about eye issues, but my main concern were the neurological conditions. Its like she believe that my nerve disorders, are result of my "its all in your head" problems. i find it odd that she touches my skin rashes without gloves, isnt that unsanitary.
Large cities tend to have better physicians specialist, or specialist centers, because of the larger patient and profit base for insurance, and profit.
Kaiser, an HMO in bay area, california, have all specialist within a few buildings scattered across the city. Depending on the insurance, or HMO group the service is the best near thier headquarters or the state your in, if you try to find the same service, like kaiser in other states, the service and insurance administration is much worst i heard. same goes for aetna.
none of my loss of sensations and loss of smell have even go away yet. My neuropathy pins and needles keeps cycling, every week.
I suspect it is an autoimmune, or damage to the brain that controls sensations, temporal and parietal lobe, maybe from the aNTI-CHOLINGENIC I TOOK. BENADRYL is too powerful of a drug to be used as OTC, and other similar in effect to it. it affects the brain like some other more potent drugs treating depression, or anxiety. i was on the generic benadryl for quite some time before i noticed the smell loss. or it has something to do with my skin rashes (contact dermatitis, unknown cause) that developed last year.

the diagnosis they use when they believe something is all in your head and it is causing the symptoms you have is called conversion disorder in the category of somatoform disorders. it is diagnosed much more often in the south than anywhere else in the united states. i suspect that the diagnosis is often used in cases of people with peripheral neuropathy by doctors who are less than adequately knowldegable about the disease or who are too lazy to do the required testing to actually find the cause. much as alcoholism is quickly used by some doctors as a cause for PN without proper testing if that is in the medical history.

That's a pretty substantial claim. Got anything to back it up?

When I talked with the lab that completed my skin biopsy, I asked where there were they received the least biopsy requisitions and they said the south.

So I thought maybe it was population based, and they said that even Atlanta (Emory) and Nashville (Vanderbilt) had very few requests for the medium.

So based off this the South is quick to give a psychosomatic diagnosis for PN? Sorry but I have a tough time believing this *admin edit* As a Southerner I receive excellent medical care and I believe we have great physicians.

The unfortunate reason I know about geography and skin biopsies is because my lovely insurance company did not want to pay in-network for the biopsy. I was trying to find a lab that was in network. The funny part is that there is not one that has a contract with my insurance company. That resulted in being told about geographic areas and skin biopsies by the lab. So, I have been schooled more on this topic than I would like. Would rather be out hiking or swimming like I used to before this happened to me.

The suffering alone is enough for me. From the posts, I am probably not even near to most folks who suffer on this board. Noteworthy is that I have received care in the North, East Coast, and the South.

I was born in the deep south and I love it here. Unfortunately I have told by one Northern Neurologist and three Southern ones that I did not have neuropathy.

Direct quotes from my permanent written medical record. "We can find no objective reason for M....symptoms....I am skeptical that any of M.... symptoms are neurological in nature."

Last week, I was able to remotely touch base with a southern Neuropathy support group. Most were women and all the women had been told initially that their neuropathy was in their head. My early diagnosis was shocking to them.

Only the kind, supportive folks on this board were able to help me fight for a skin biopsy.

Otherwise, I would be another pain ridden patient with no reason for pain.

I am certain from reading many introductions on this board, regardless of geography, often it is easier to tell someone that their symptoms are stress related than actually take the time and effort to find a root cause.

It is ignorance on the provider's part. Heaven knows that anyone with these symptoms would do anything to get rid of the suffering and go back to being normal. I had no idea how charmed my life before was. Still am working on the stages of grief and appreciating what I still can do.

Neuroproblem, I hope that this is helpful to you.

baba222 in the medical literature on conversion disorder its clearly stated that the diagnosis of conversion disorder can only be made after the presence of possible neurological conditions have been examined and tested for and subsequently ruled out. in your case as well as many others ive read about on here, it seems that psychological causes for peripheral neuropathy are being advanced with little to no testing or examination. this is a great disservice to the patient.

Basically lazy way to diagnose people, i think some private groups make more money by having you constantly on psych meds, because this is a chronic issue, they get a stead stream of income.
psychosomatic disease, involves having both physical and mental disoders.
My pcp is only interested in the mental part, and even went as far as to reccommend a therapist, because she believes my symptoms dont exist, except in my head. She dint even believe i went to the ENT for my nosebleeds , is for the right reason, lol(she look at my kaiser records from 2013,), she could be basing the diagnosis, off the ent i was so ****** about.
i suffered from seasonal nosebleeds from 2009-2013, never knew the cause of the nosebleeds, i suspected something, until a new ent took the time to look at my nose.
@baba222, neuropathy doesnt need to be caused by neurological issues, it can be caused by autoimmune diseases, vitamin deficiencies, or genetic disorders, which are not directly neurolgical.so neuropathy is usually a secondary constellation of symptoms, of something underlying. I posted many times on many sites. when i first noticed my loss of sensation, i was actually have myclonic and hypnic jerks, that were similar to the side effects of diphenhydramine, but somehow they dont even believe that is part of my symptom list. as well as unusual and frequent twitching which i have some weeks. No one seems to have loss of smell or reduced taste on this board as well.