I have more sense than a team of Neurologists

[lenora]

I receive a free magazine (and I'm sure many of you do, also) called BRAIN &.................................forgive me, I forget the last part.

The last magazine has been thrown away, or I'd get it and give you the needed info for your to find it yourself.
Anyway, it was about Long Haul Syndrome and nowhere, in this entire article did it even mention ME, CFS or any other recognizable name.

It was very irritating to read it and I hope a great many people reply to the lack of information on the ever-so-similar illness, ME. I think a great deal of information and money has been spent on ME, but we seem to constantly come up with losses.

I'm sure the same thing happened at the Royal Free epidemic and the many epidemics prior to that. In other words, they're just tired of the same old story. Do they doubt it exists? Who would know?

People with ME went for a tremendous amount of time before they were diagnosed. I think we're just caught up as one illness instead of the probably 2-3 or more that we have. Perhaps there will never be an answer; perhaps we'll have it in a year. It truly is a guessing game.

This is one of the reasons we can't blame doctors, especially doctors who do their very best. If the science isn't proof, then they can't treat....although over the years my neurologist used everything we had available to help us. Remember that we started off with small doses of a very old drug, amitryptiline, a drug used for mental conditions. Is this where the mental illness comes in?.....I don't have the answer.

The NIH was founded for one purpose only in the 1800's. By the late 1940's the Cancer Institute and the NIH were combined. Did this work against us? No, because we've had helpful drugs that have been offshoots of that research.

Also, what about other countries? Please....the size of the country does not translate into the nos. of people affected. What is being done in other western nations? We are all in this mess together and somehow we'll have to solve it together....not N. America alone, Europe alone, etc. For the past 35++ years of my life, my health has been precarious at best. Before that, I suffered from genetic illnesses....in other words, my entire life. I've been a spokesperson since the age of under 10.

I defend doctors only b/c so many of them helped me (for free) when I was a young child. I know a good doctor when I see one and no, he doesn't have proof of a disease because as of now there is no proof. Still, many are good people with problems of their own (I just lost my wonderful neurologist) who still try very hard to help patients face unspeakable horrors....many worse than ours.

Yes, some may be dismissive and only interested in the money, but maybe I've just been fortunate or I look at them as human beings in need of encouragement also. Not all are good; but not all are bad, still we have to look and give them and the NIH a steady stream of encouragement and show our need. It's up to each of us as individuals and as a group. Yours, Lenora

 

[Alvin2]

I had another appointment today, was about what i expected.
There is nothing wrong with you physically, its psychosomatic. Which is real, and very treatable
So we have had great success with brain retraining, will you try it.
I said yes as a brinkmanship move, its a game that i am good at playing.

What i plan is to parlay it into getting a referral to another neurologist. What i need is to find someone who does deep testing to uncover unknown conditions.

 

[Nord Wolf]

What i plan is to parlay it into getting a referral to another neurologist. What i need is to find someone who does deep testing to uncover unknown conditions.

Sounds like a solid move. I'm waiting, and waiting, and waiting to get in with a neurologist nearby who is on the Dysautonomia and PoTS foundation board in New England. He is the only one in the state. There are two in the neighboring state, but only one here. I'm not holding any grand hopes in meeting with him, but until I try I won't know what he might have to say or offer, so....
I find that seems to be the case with the entire medical field; hard to hold any real hope, certainly no expectations, but at the same time there is that inner drive that says I need to keep trying.
Good luck with a referral.

 

[Gingergrrl]

I said yes as a brinkmanship move, its a game that i am good at playing. What i plan is to parlay it into getting a referral to another neurologist. What i need is to find someone who does deep testing to uncover unknown conditions.

This sounds like a good plan . Although I am sorry that you are having to deal with more nonsense

 

[Alvin2]

Sounds like a solid move. I'm waiting, and waiting, and waiting to get in with a neurologist nearby who is on the Dysautonomia and PoTS foundation board in New England. He is the only one in the state. There are two in the neighboring state, but only one here. I'm not holding any grand hopes in meeting with him, but until I try I won't know what he might have to say or offer, so....
I find that seems to be the case with the entire medical field; hard to hold any real hope, certainly no expectations, but at the same time there is that inner drive that says I need to keep trying.
Good luck with a referral.

This sounds about right.
When a doctor does not see something on a regular basis they cannot fathom its existence.
And when its beyond their field of practice they just shut down and sometimes turn on the patient

This sounds like a good plan . Although I am sorry that you are having to deal with more nonsense

Thanks.
Its nuts when i have more sense and knowledge than the doctor.
What i find most frustrating is that they cannot see past their own limitations (for lack of a better word) even when you explain it in plain English.
In fact i think its seen as a threat.

 

[Alvin2]

I insisted on an in person appt (even though i am still N95 masking) and had a chat with the head neurologist. Her answer "you have FND. You have to believe it to get better"
The stonewalling meant i could not get far (the house of cards explanation of FND is airtight, but it is still a house of cards). Then she left.
In retrospect i should have asked what they think of ME/CFS to truly understand how they think. Followup virtually in 3 months, i will do so then.

The treatment is physiotherapy, CBT, and a workbook to break my belief i am ill.
Oh and antidepressants. I wonder if they will graduate to antipsychotics. 🤦‍♂️

Not sure where to go from here, i have no problem with physiotherapy if it helps (i have several co-morbid non ME issues that would be nice to address) and perhaps i might get lucky and they can recommend a better neurologist. Then again a physiotherapist is not likely going to know any neurologists. I'm not going to do anything that will make the ME worse. I don't think they will give me a referral for a second opinion but i should try that as well at the followup.

Perhaps what i need to do is ask any future doc about ME at the first appointment, but then that can set the tone the wrong way.

I can pretend to take the antidepressants (very painful life threatening side effects last time so i'd put a gun to my head before i would actually take them, its far more humane) and go along until shockingly no improvement occurs. But i don't think they are the type to give up when their nonsense implodes even if took the damn things, its like a dog with the world's tastiest bone.

 

[Judee]

Do you have dysautonomia at all? What about one of the doctors from this site? https://dysautonomiainternational.org/page.php?ID=14 (list may be outdated)

I think some of the doctors on there are cardiologists, but some are also neurologists, some are neuropsychiatrists.

If you contact one of them and they are no longer taking new patients, ask if they can recommend someone else in your area.

 

[pattismith]

The first point is:

what do you expect from an appointment with a neurologist?

What kind of testing do you expect from him?

The neurologist will conduct the testing he is trained for according to your symptoms.

If you have symptoms matching with autonomic system disorder, than a neurologist specialized in autonomic system is needed do perform the testing.

If your symptoms match with vascular issues, than an angiologist might be a better choice to find a proper testing.

The best specialists to help you finding the proper testing are internist doctors.
They are the ones with enough knowledge in both rheumatology, neurology, angiology, so they can be helpful... If they wish!

The problem is to go to them with the good description of your symptoms.

During my life I consulted doctors because of fatigue/ brain fog/pain/exercice intolerance...

These symptoms are not helpful to doctors nor to do a diagnosis (other than psychiatric).

When I started to talk about my other symptoms (the ones that didn't bother me much so I was never mentioning them), I got more success to get proper testing and diagnosis.

Got myself referred to one, he doesn't think i have a rheumatological issue, but did run a bunch of blood tests of things i have never heard of, all negative. Good in a way but also frustrating in another way.

The negative results doesn't mean you don't have a rheumatic disease.
This is a point you musn't forget and rheumatologists shouldn't forget it either.

I saw 4 rheumatologists and they all told me it wasn't a rheumatologic issue.

However, some rheumatic diseases like Psoriatic Arthritis or Behcet don't have any blood testing that allows a diagnosis.

Do you know someone in your family that may be affected by psoriasis, arthritis or ulcers?

 

[Viala]

When I started to talk about my other symptoms (the ones that didn't bother me much so I was never mentioning them), I got more success to get proper testing and diagnosis.

This is good advice.

I also wonder if changing 'fatigue' into 'weakness' would help. Fatigue is strongly linked to depression, general weakness not so much, it is not the same as fatigue but it still implies the lack of energy. Whatever key-word that would unlock their willingness to look into other possible causes.

and a workbook to break my belief i am ill.

I still can't wrap my head around that amount of gaslighting. How can they know it's a belief and not some serious illness, can they prove it? They cannot know for sure, it's a blind guess. This telling people they're imagining diseases is getting old.

 

[Judee]

I still can't wrap my head around that amount of gaslighting. How can they know it's a belief and not some serious illness, can they prove it? They cannot know for sure, it's a blind guess. This telling people they're imagining diseases is getting old.

Exactly. It's their "belief" system that needs to change.

 

[Viala]

Exactly. It's their "belief" system that need to change.

I wish, but they think their 'belief' system is science, even if it's based on speculations. How can anyone argue with that? It's like magic and pulling a rabbit out of a hat.

 

[lenora]

As always, it's a matter of finding the right person, the one who knows the most and will act on it. These men/women are around, but people do get old and retire or die....what are the names of those presently with expertise in our field.

How long does your insurance company pay for your doctor's time? This is the problem at the bottom of the barrel.....how many MRI's are you allowed, and other tests. Doctors and their offices often have to go back 2 and 3 times to get permission for something. And no, they really don't know how much this, that or the other costs.....see the Credit Office for that information.

I've had firsthand experience with trying to get something really important for both my daughter and later, myself. Each day was a new answer, a new person....and I tracked this on a calendar, even the time.
I do fight the foe and fight hard. Personally I think we have long needed an ethics board in our govt. True, it's one more hindrance but if people who think "outside the box" are on it, we may be surprised at what comes. The old ways simply aren't working.

 

[Nord Wolf]

FND, how absurd. A backdoor escape route for doctors who don’t want anything that actually challenges their narrow limits of study. Medical specialties in itself has become a level of detrimental avenues to patients. So many doctors are so specialized that they don’t even understand the jargon between other doctors anymore. I’ve been to doctors with written notes from other doctors, and the new doctor looks at the note and then says,”I don’t understand the body in these terms”. True absurdity.

It is well known that if someone gets chronic illness from an immune mediated adjuvant assault, it has nothing to do with their emotions or psychological makeup.

In the 80s there were hundreds of hospital staff diagnosed with ME/CFS in Nevada from a medical procedure they all got.

Animal organs with viruses and bacteria are found in numerous ingredients in todays commercial world. Some people are born with the genetic inability to naturally handle small levels of arsenic, let alone detoxify from it, and then they eat lots of rice, for example, and they end up with chronic disease.

Stealth human viruses such are also found in many ingredients around the world, simply because there is no awareness and so there is no way to eradicate them. Even a medical treatment such as IVIG for the treatment of numerous conditions has been known to be contaminated with stealth viruses.

Millions and millions of people are continually coming down with chronic diseases and still the majority of the western medical system denies their existence. As our world becomes more toxic the diseases continue to multiply and spread. But we all know the medical field isn’t about healing, but rather profit and ego. Then you have so many in the alternative healing world who continue to chant that all disease is due to mind set and people holding negative energy. Tell that to stealth viruses found in food and supplements, genetic birth alterations from the slew of new chemicals assaulting our bodies and environments daily, and on and on.

Place the standard western medical field next to the standard new age type alternative healthcare field, and it is easy to see absurdity on both ends of the spectrum. Nothing easy about navigating it all.

 

[Alvin2]

Do you have dysautonomia at all? What about one of the doctors from this site? https://dysautonomiainternational.org/page.php?ID=14 (list may be outdated)

I think some of the doctors on there are cardiologists, but some are also neurologists, some are neuropsychiatrists.

If you contact one of them and they are no longer taking new patients, ask if they can recommend someone else in your area.

I have a very mild version of it compared to other PR members.
Though perhaps such a doctor is worth an appointment.

What kind of testing do you expect from him?

If i knew this i would be the neurologist

When I started to talk about my other symptoms (the ones that didn't bother me much so I was never mentioning them), I got more success to get proper testing and diagnosis.

Out of curiosity which symptoms are you referring to?

Do you know someone in your family that may be affected by psoriasis, arthritis or ulcers?

Arthritis yes.

I also wonder if changing 'fatigue' into 'weakness' would help. Fatigue is strongly linked to depression, general weakness not so much, it is not the same as fatigue but it still implies the lack of energy. Whatever key-word that would unlock their willingness to look into other possible causes.

Interesting idea.

I still can't wrap my head around that amount of gaslighting. How can they know it's a belief and not some serious illness, can they prove it?

"I have seen hundreds of patients in my career"
Verbatim quote.

They cannot know for sure, it's a blind guess. This telling people they're imagining diseases is getting old.

Interestingly they take it very seriously, they consider FND an organic disease.

I wish, but they think their 'belief' system is science, even if it's based on speculations. How can anyone argue with that? It's like magic and pulling a rabbit out of a hat.

To them its settled science. Yet its a house of cards. There are people who have somatoform disorder or Munchausen syndrome but they need to figure out how to separate them from the people who are incorrectly diagnosed.

How long does your insurance company pay for your doctor's time? This is the problem at the bottom of the barrel.....how many MRI's are you allowed, and other tests. Doctors and their offices often have to go back 2 and 3 times to get permission for something. And no, they really don't know how much this, that or the other costs.....see the Credit Office for that information.

Being in Canada this is not an issue. I have had 4 brain MRIs, all show white matter lesions but they don't think its MS as the pattern of the lesions is atypical.

FND, how absurd. A backdoor escape route for doctors who don’t want anything that actually challenges their narrow limits of study.

I would argue it can exist, though they diagnose it like a fish drinks water.
Instead of digging they take the easy way out, we don't know or can't figure out the right test or there is no test, you must have FND.

 

[Rufous McKinney]

Millions and millions of people are continually coming down with chronic diseases and still the majority of the western medical system denies their existence.

I just had an appointment with a gerontologist, trained in another country. It was the standard debacle, made worse by the fact that my daughter had to do all the talking in Spanish, and I could see her making a valiant effort to describe her mother's chronic health problems, only for some reason, I was told to take SSRIs in the first three minutes of this doctor's arrival. By a doctor person who is not even speaking to me.

She also said I needed to get out of the house. Oh really?

Yes, I was in tears, at some stage. The day comes, the world conspires to make you feel like why did I bother being born. Why did I bother to grow up? Only to be treated like this?

 

[Rufous McKinney]

To them its settled science. Yet its a house of cards.

doctors who are not trained psychiatrists are passing out psyche drugs which are used to terminate any further medical care for the person in question.

makes perfectly sense.

 

[pattismith]

Arthritis yes.

Do you know what kind of arthritis runs in your family?

 

[Alvin2]

doctors who are not trained psychiatrists are passing out psyche drugs which are used to terminate any further medical care for the person in question.

makes perfectly sense.

It is surprising how simplistic psychological medicine is.
That said they actually believe they are giving proper medical care, not terminating it.

Do you know what kind of arthritis runs in your family?

I'm afraid i don't know what type of arthritis.

 

[Viala]

I just had an appointment with a gerontologist, trained in another country. It was the standard debacle, made worse by the fact that my daughter had to do all the talking in Spanish, and I could see her making a valiant effort to describe her mother's chronic health problems, only for some reason, I was told to take SSRIs in the first three minutes of this doctor's arrival. By a doctor person who is not even speaking to me.

She also said I needed to get out of the house. Oh really?

Yes, I was in tears, at some stage. The day comes, the world conspires to make you feel like why did I bother being born. Why did I bother to grow up? Only to be treated like this?

I imagine how different it would be if we had proper support of doctors, governments and mass media. Empathy, understanding and support, physical, emotional, financial, anything we need, no gaslighting, no uphill battle, no ignorance. We're intelligent spiecies, why it has to be so hard and why doctors act as if they knew only a couple of diseases and diagnosed everything using a one page leaflet. It literally looks like that.

How can we know more about some diseases than them, it's not just CFS. Some things are basic knowledge, but somehow a GP for example doesn't know that adults can have food sensitivies and insists we should eat everything. What's with that? Oh and she was another three minute diagnosis psychic. Sometimes I wonder if they are sane at all.

 

[Mary]

I won't go to a doctor unless I know what it is I want them to do - e.g., cholesterol checked? Any doctor will do. But I would never go to a doctor about PEM or crazy insomnia etc. But if I learned about a specific test which might be valuable, then that would be something I would see a doctor for. However, I've learned that regular GPs and internists are useless for this. And would try my best to find a functional medicine or integrative medicine doctor who might have their mind opened a little bit about ME/CFS and would be willing to work with me.

I think we have to basically be our own doctors, know what we need before we go and find someone to do what we need done. Instead of going and expecting the doctor to just help us somehow.

I'm really fortunate to have found an osteopath not too far from me who is actually knowledgeable about ME/CFS. He doesn't have any magic answers, but actually listens when I talk - that's so rare! And he recommended I go on Valtrex, which I'm in the process of doing. It's a long story why I haven't tried it yet. I know most doctors would just recommend an SSRI (has been done in the past) etc.

And I'll put in one more plug for muscle testing - it's been invaluable for me, helped with several digestive issues, adrenals, what supplements to take and how much and other things. It's never recommended I take an SSRI!