show 2nd opinion neuro the records from prior dr who wrote me off?

[nenej2015]

Hello - I'm still in the process of finding local specialist drs (as required by my employer to complete LTD forms justifying my continued inability to return to work) who will take me seriously and not just send me back to another psych dr. My rheum isn't really on board saying he tested me for all he can (after all labs came back with only a low abnormal level of ANA so he put me on Lyrica which majorly screwed me up and sent me to phys therapy which also screwed me up - even though pain isn't my problem). rheum now wants me to go back to the neuro dr to further investigate continued muscle weakness memory loss cognitive problems, insomnia, exhaustion etc.

I decided to see a different neuro because the one I went to last August totally wrote me off, said in his notes that he thought my symptoms were not of organic origin but would run tests anyway and didn't seem to believe that I was as incapacitated as I reported etc.

Finally I get to my question do I give the 2nd opinion neurologist that unbelieving and condescending dr's notes and test results?

One test the first dr ran was a neuropsych workup wherein that dr reports all my memory and cognitive probs and sustemic complaints are all due to PTSD and depression (no! I've had this just not as bad since before certain traumas occurred) and should see a psych and take psych meds.....(I've had ME symptoms since around 1999 and have been to many psych drs as directed by many drs prior and since then have taken over 36 different psych meds - none of which worked and I believe only made things worse)....

All these drs seem to assume that I'm just trying to get someone to sign me off duty so I can sit home enjoying my 50% salary. I want to find someone who will find out what's really wrong and help me return to my life for my babies and my severe grief of not being able to live any kind of life or do job I love. I want a dr who will allow me the time I apparently need to get better while allowing me to keep the job I worked so hard for and love so much.

Trying to strategize how to handle all the drs and employer deadlines etc by myself with half a brain is near to impossible especially when I can't talk about any of this with most people I know and work with. My job is one that requires top mental and physical abilities, doesn't respect 'complaining' and expects us to push through. Telling colleagues I have memory loss and can't think straight even to understand what I read will forever label me as one no one will ever trust to work with again.

My brain is barely functioning today so I apologize for the long post and -wow- the longer tangents. I greatly appreciate any advice on how to handle this. This site and all of you are God given life lines

 

[sarah darwins]

nenej — I really hope you can find a doctor who is willing to look beyond convenient explanations. They do exist. But I know exactly where you’re coming from in that respect. I had a pretty major upheaval, which might be deemed traumatic, several years after becoming ill with ME. But almost any time I mention that life event to a new doctor, I see their eyes light up with a sort of mental “Aha!” and from that point on they don’t hear a word I say. The fact that it happened a long time after I became ill seems to leap a logic gap in their brains (I think this is known as magical thinking). Now, when possible, I avoid mentioning it at all.

It’s probably not what you want to hear, but it does sound like your job is almost calculated to make recovery really tough. Is there any scope for you to shift into a related form of work that is less competitive/ruthless and deadline-oriented?

 

[daisybell]

I wouldn't give the new dr the notes from the old one if I was in your position. I think that this just increases the risk of the new dr running with the previous one's thinking.
Can you get to see one of the ME/CFS specialists?

 

[TigerLilea]

I definitely wouldn't give the new doctor the notes from the previous one. And I wouldn't mention, either, that this is a second opinion you are getting as I don't think you will get taken as seriously if you do.

 

[minkeygirl]

I recently saw an immunologist as a 2nd opinion because my IgG subsets are a mess. He did not have my previous doc notes although he knew I went because he had labs from her.

He asked me what treatment plan the other immunologist wanted to give me for my low IgG numbers. When I said more vaccines, he said "that's not a treatment". After his diagnosis he asked for notes which was fine because by then he knew what he wanted to do.

Let this guy have fresh eyes.

 

[JaimeS]

Agreed with everyone else here. Show them the test results and do NOT allow them to have the 'personal' notes. It prejudices people and narrows their thinking. I would even limit what test results I gave the guy/gal you're going to see next. Too many results paints an unfavorable picture.

Spend an afternoon organizing the documentation you do have as well. My last doctor's visit that went well (besides the one with De Meirlier), I came in with a shoulder bag carrying my (meticulously organized, lengthy) notes, in a large binder. I didn't take it out of the bag until the doctor began mentioning some things that a study referred to. When I realized she really was research-oriented, clever and open-minded, I removed the looseleaf from the bag and began to use articles to support my points. This could have easily backfired, though, if she were the wrong sort of physician. Instead, she was impressed and supportive.

Before that, all I had out in front of me were the test results from Mayo Clinic. 'Feeling her out'. Too many negative experiences! It sucks that we have to put on a bit of a show, but how one presents oneself matters.

-J

 

[SOC]

If you are trying to get a 2nd opinion, you should not give the 2nd doctor the info from the 1st doctor. The point is to get a new opinion, not tempt your 2nd opinion doctor to lazily repeat what the 1st doctor said.

Since your 1st neuro didn't pay attention to what you were telling him and dismissed your concerns, that's even more reason not to show the results to the new neuro. Why poison his mind with bad information?

 

[nenej2015]

nenej — I really hope you can find a doctor who is willing to look beyond convenient explanations. They do exist. But I know exactly where you’re coming from in that respect. I had a pretty major upheaval, which might be deemed traumatic, several years after becoming ill with ME. But almost any time I mention that life event to a new doctor, I see their eyes light up with a sort of mental “Aha!” and from that point on they don’t hear a word I say. The fact that it happened a long time after I became ill seems to leap a logic gap in their brains (I think this is known as magical thinking). Now, when possible, I avoid mentioning it at all.

It’s probably not what you want to hear, but it does sound like your job is almost calculated to make recovery really tough. Is there any scope for you to shift into a related form of work that is less competitive/ruthless and deadline-oriented?

Sarah - THX so much for your reply. I'm sorry to hear about your traumatic situation and subsequent ill treatment by the 'experts' you consulted. That's a very good point and I'm not going to mention those things in future so drs won't get hung up on it. And you are right about my job being a stressful one not conducive to proper recovery/managemt from this stuff. I'm in the process of grieving the loss of what I was once capable of and vacillate betwen thinking I can work my way back to my prior position and all it entailed with realization that constant swimming upstream to stay afloat at work left absolutely nothing after each shift for my little ones at home. I'm very lucky in that I'm legally eligible to retire in another couple years and they would let me ride a desk somewhere to get through without having to do the intensive stuff. I'll just have to accept that the push to keep up for the last several years hasn't worked. Thank you for your reply and I'm hoping you find an empathic dr to help you

 

[nenej2015]

If you are trying to get a 2nd opinion, you should not give the 2nd doctor the info from the 1st doctor. The point is to get a new opinion, not tempt your 2nd opinion doctor to lazily repeat what the 1st doctor said.

Since your 1st neuro didn't pay attention to what you were telling him and dismissed your concerns, that's even more reason not to show the results to the new neuro. Why poison his mind with bad information?

Thanks for giving me a voice of reason on this. My former analytic brain doesn't automatically assess situations like this effectively as it once did. And I was afraid I'd be caught up at some point f I didn't and be deemed as not forthcoming. I'm so tired of trying to navigate these 'specialists' who simply don't have a clue that what's happening with most of us is outside the generic middle road AMA approach. I will just give them the tests and not the notes when I go next week - thanks!!

 

[nenej2015]

Agreed with everyone else here. Show them the test results and do NOT allow them to have the 'personal' notes. It prejudices people and narrows their thinking. I would even limit what test results I gave the guy/gal you're going to see next. Too many results paints an unfavorable picture.

Spend an afternoon organizing the documentation you do have as well. My last doctor's visit that went well (besides the one with De Meirlier), I came in with a shoulder bag carrying my (meticulously organized, lengthy) notes, in a large binder. I didn't take it out of the bag until the doctor began mentioning some things that a study referred to. When I realized she really was research-oriented, clever and open-minded, I removed the looseleaf from the bag and began to use articles to support my points. This could have easily backfired, though, if she were the wrong sort of physician. Instead, she was impressed and supportive.

Before that, all I had out in front of me were the test results from Mayo Clinic. 'Feeling her out'. Too many negative experiences! It sucks that we have to put on a bit of a show, but how one presents oneself matters.

-J

Jaime- you are so right! You sound like a very well organized and knowledgeable person, well versed in where to find the scientific studies and info that pertain to your specific situation. I can only imagine how stressful it must be for you to try to convince these people to look at what you've found while not adversely pricking their egos. I'm going to follow your advice on this and feel them out first like you said.

My brain is so different now with the confusion and fog that it's beyond exhausting trying to figure out how to best present my situation so I don't turn them off to what I'm trying to convey. Some sources advise patients to be concise and not give drs lengthy symptom lists and only focus on the 'main' problems. Next to impossible for brain fogged people who want to present every single significant symptom in the hopes that the big picture will emerge for this latest dr after all prior drs found 'nothing wrong'.

I'm going to do what you suggest though and start out smaller then bring out the other stuff if they seem receptive. thank you much for the advice and I'm really happy to hear you found a dr who seems to be on the same page with you !

 

[nenej2015]

I recently saw an immunologist as a 2nd opinion because my IgG subsets are a mess. He did not have my previous doc notes although he knew I went because he had labs from her.

He asked me what treatment plan the other immunologist wanted to give me for my low IgG numbers. When I said more vaccines, he said "that's not a treatment". After his diagnosis he asked for notes which was fine because by then he knew what he wanted to do.

Let this guy have fresh eyes.

Very good advice and I thank you for it. It sounds like you found a dr receptive to you. I'm very glad to hear that

 

[JaimeS]

@nenej2015 - thank you so much! This is what I do re: symptoms. I decide what my most concerning symptom is at the time, like my #1. I talk about it first. Then I have two or three secondary symptoms I'm going to mention, and any results that I think relate to them. Sometimes this is as far as you get before they cut you off, so that's all you really have to know off the top of your head - and if you're REALLY brain-foggy, you can write three or four things on a post-it to remind yourself.

If the doctor asks leading questions, then you can go into all the rest. That means they're ready to hear it.

Doctors tend to be arrogant (the way teachers tend to be pedantic - self-demonstrating article!) and if you confuse them, they tend to react aggressively, like how dare you make me feel too slow to get this? Start with a few symptoms, let them assimilate and then mention more when they look ready for more.

Oh, and one more thing - NEVER MENTION PSYCHOLOGICAL SYMPTOMS... unless that's what you want to be treated for, and that alone. 'Brain fog' and 'issues with memory' is okay. If you tend to feel sorrowful as well when you get these symptoms, don't talk about it. And never make any neurological symptoms the first thing you mention unless it's something they're trained to think of as serious, like 'seizures'.

Ugh, this is becoming the saddest conversation about medicine on PR, and that's saying something...

-J

 

[nenej2015]

I wouldn't give the new dr the notes from the old one if I was in your position. I think that this just increases the risk of the new dr running with the previous one's thinking.
Can you get to see one of the ME/CFS specialists?

Daisybell - I think you and the other ladies are correct after reading the unanimous replies. I'm not going to give the prior notes and will hope for a more receptive doc this time around.

I actually just made an appointment with dr Kaufman in CA for his next available on July 20th. Im going to the new neuro locally because my rheum wants me to have them reassess continued muscle weakness and possible neuro caused exhaustion and brain fog/memory loss as well as administer a sleep study. I want to follow all dr orders in the event of a worst case scenario where Im asked by employer for more dr proof of continued disabikity/inability to return to duty before I get in to see a CFS specialist. If my local drs are asked to submit letters or notes; I don't want them to say I was an uncooperative patient etc.

Thank you for the advice!

 

[nenej2015]

@nenej2015 - thank you so much! This is what I do re: symptoms. I decide what my most concerning symptom is at the time, like my #1. I talk about it first. Then I have two or three secondary symptoms I'm going to mention, and any results that I think relate to them. Sometimes this is as far as you get before they cut you off, so that's all you really have to know off the top of your head - and if you're REALLY brain-foggy, you can write three or four things on a post-it to remind yourself.

If the doctor asks leading questions, then you can go into all the rest. That means they're ready to hear it.

Doctors tend to be arrogant (the way teachers tend to be pedantic - self-demonstrating article!) and if you confuse them, they tend to react aggressively, like how dare you make me feel too slow to get this? Start with a few symptoms, let them assimilate and then mention more when they look ready for more.

Oh, and one more thing - NEVER MENTION PSYCHOLOGICAL SYMPTOMS... unless that's what you want to be treated for, and that alone. 'Brain fog' and 'issues with memory' is okay. If you tend to feel sorrowful as well when you get these symptoms, don't talk about it. And never make any neurological symptoms the first thing you mention unless it's something they're trained to think of as serious, like 'seizures'.

Ugh, this is becoming the saddest conversation about medicine on PR, and that's saying something...

-J

Oh wow - thank you VERY much for that. Haha you are very correct about the fragile egos of said 'experts' lol. Very well said lol. Ok you've lessened my anxiety exponentially about this stupid appt!! You've given me a solid game plan on how to proceed. Thank you so very much!

 

[nenej2015]

I definitely wouldn't give the new doctor the notes from the previous one. And I wouldn't mention, either, that this is a second opinion you are getting as I don't think you will get taken as seriously if you do.

Ok. Will do can't thank you guys enough for the good advice. Hoping you all have a relaxing, pain-free evening with lots of sleep tonight. Thanks TigerLilea

 

[AndyPandy]

@nenej2015 I agree with the others posting here. I would start afresh with this specialist and see what she or he comes up with.

Regarding the employment issue, I was in a high stress, intellectually demanding position in the early stages of the illness. I was close to early retiring age. I negotiated a soft option at work thinking I could make it to the end. This was agreed to as I had been a good performer for many years and it was obvious that I was ill, although undiagnosed.

In the end I was too ill to continue even at reduced workload and reduced hours. I most likely made things much worse by pushing myself.

I was able to get a disability pension through a superannuation disability insurance scheme I had contributed to for years. One of the reports they considered was from a neurologist who said he could find no organic cause for my illness and recommended I be referred to a psychiatrist. The psychiatrist from the insurance scheme found that I had no psych issues. He and the occupational physician found me to be disabled due to ME/CFS.

So in my case, an unfavourable report from a neurologist wasn't fatal to my claim.

Best wishes, Andy

 

[SOC]

@nenej2015 - thank you so much! This is what I do re: symptoms. I decide what my most concerning symptom is at the time, like my #1. I talk about it first. Then I have two or three secondary symptoms I'm going to mention, and any results that I think relate to them. Sometimes this is as far as you get before they cut you off, so that's all you really have to know off the top of your head - and if you're REALLY brain-foggy, you can write three or four things on a post-it to remind yourself.

Excellent point.

We need to keep in mind that doctors are taught in medical school that "too many" symptoms, especially across multiple body systems, indicates hypochondria. We know that is not necessarily true, but we have to deal with that mindset nonetheless.

It's easy for us, the laypeople, to think that having lots of dreadful symptoms should indicate to the doctor how serious and problematic our condition is. Obviously we're really sick, right? Unfortunately most doctors, because of their training, are not thinking that way. They're thinking hypochondriac or whiner, not seriously ill person who desperately needs my help.

So we patients need to work within the doctors' paradigm of illness if we want to get care. We have no choice. It comes down to working they way they want to work or don't get what you need. @JaimieS is right. Limit your list of symptoms at any given visit to 2 or 3. This makes sense since the doctor has only a limited amount of time to think about your problem anyway. You can mention more symptoms you want addressed at future visits.

Another thing that might help is to limit the symptoms you describe to those that are within that particular doctor's purview. That may require a bit a research to determine which symptoms could be considered neurological rather than endocrine, for example. Yes, we aren't the experts and shouldn't have to do the work of sorting for those who are supposed to be more knowledgeable, but that's the current reality. Doctors in general are short on time and long on ego. Giving them more to think about in the time they have scheduled to do it only creates more stress for them and you don't want your doctor feeling stressed by you if you want the best care.

The only doctors who seem capable of processing the whole load of ME/CFS symptoms, especially in one big data dump, are top ME/CFS specialists who understand the illness and deal with it every day. All other specialists (and GPs) need to be given only the part of the information you expect them to handle in that moment.

 

[JaimeS]

Another thing that might help is to limit the symptoms you describe to those that are within that particular doctor's purview. That may require a bit a research to determine which symptoms could be considered neurological rather than endocrine, for example.

Ugh, @SOC, I do that TOO. It's nuts. If I'm seeing an endocrinologist, I'm like, "here are my symptoms that relate to endocrinology". If I dare add, "and I have a pituitary adenoma", the doc will be quick to remind me,

"...but that's really more the purview of neurology",

even though the pituitary adenoma is likely causing or contributing to the endocrine problem(s).

I think part of that is due to litigation - in the context of a medical appointment, it's understood that they are selling their expertise. If they dare discuss something not related to their field, someone could later claim, "they were giving me advice that was clearly the purview of an OBGYN, despite the fact that they are a rheumatologist, and have therefore never heard of the reproductive system in their lives." And the patient would win, because Society.

My docs at Mayo in particular were SO VERY 'I only work within my tiny box'. They even used the same phrasing to stop me from continuing to discuss the topic that was outside their purview. That made me realize they'd been trained in what to say if the patient dared veer into another body system they weren't licensed to address.

The hoops. The flaming hoops, to jump through...

-J

 

[JaimeS]

I would love the go-ahead to write this up as an article for the blog, @everyone ever.

-J

 

[SickOfSickness]

Another thing that might help is to limit the symptoms you describe to those that are within that particular doctor's purview. That may require a bit a research to determine which symptoms could be considered neurological rather than endocrine, for example. Yes, we aren't the experts and shouldn't have to do the work of sorting for those who are supposed to be more knowledgeable, but that's the current reality.

I haven't been able to get much help from doctors because of this. I have some less common conditions.

One type of doctor tells me my problem should be addressed by another type. That type says I need a third type. The third says I need the first type.

In some cases what I need is a doctor who knows two specialties and how they interact. It's hard to find doctors like that. When I find them, they are usually hours away.

Also, sometimes they know their specialities well but they are more research oriented and not as interested in helping complex patients. They want to get through the patients fast and go back to their research.