Advice for the *First* Doctor Visit?

Messages
97
Likes
248
Location
New Jersey, US
I'm seeing a new doctor, and I'm really hoping he's open to working through differentials and eventually diagnosis. However, I'm terribly scared that he will be everything we don't want in a doctor: unwilling, unbelieving, rude, "GET and CBT", etc.

I have been keeping track of symptoms, journaling a bit, and taking many notes since this started, and have a list of my symptoms and resources for physicians - and am prepared to whip them out in the event they are needed ----

Any advice or resources you would reccomend for the first visit with a new doctor?
How should I bring up ME/CFS?
Or future mobility aids?
:sluggish:

Thanks in advance everyone :)
 
Messages
313
Likes
1,563
Location
USA
Hoping you get some good advice. I'm considering bringing it up with my doctor, but I'm very uneasy about it and will probably cop out again.

In the past I went to several doctors, wondering what was wrong with me, and none of them mentioned ME. But I was sent to psychiatrists and given psych meds.

When I finally figured out I had ME, I started to bring it up with my previous doctor, and he stopped me and said, "Don't let that become a mindset." I don't want to feel brushed off again.
 
Messages
8,474
Likes
22,911
Location
Massachusetts
Any advice or resources you would reccomend for the first visit with a new doctor?
How should I bring up ME/CFS?
Or future mobility aids?
:sluggish:
This is tough! A few pieces of advice from my experience:
  • Try to focus on two or three of the most disabling symptoms instead of throwing the kitchen sink at them
  • Write down your most important questions so you don't forget them
  • If you can, bring someone with you if you can who can take notes and remember things for you
  • When talking about the severity of your symptoms, you might try to make things concrete by explaining the impact those symptoms have on activities of daily living (ex: I can only walk x number of feet before getting winded, I have to sit down while showering or brushing my teeth, I am barely able to walk to my classes). This might be a good segue into talking about mobility aids to improve your level of functioning.
  • If there's any data from your fitbit that helps you make your case, emphasize that. Doctors prefer (and are more likely to believe) objective data like that over subjective data like symptom reporting.
  • Your doctor may not believe you. Try to prepare yourself emotionally for this possibility so if it happens it's just a setback and not the end of the world. (I wish someone had told me that before my first appointment...)
  • Think in advance about what you might say if a doctor suggests psychiatric issues so you don't have to come up with good responses on the spot (ex: if a doctor says an increased heart rate is due to anxiety, you might say: "But my heart rate goes down as soon as I'm sitting or lying down. Shouldn't I be just as anxious no matter what position I'm in?")

Also, this recently-published article from the US ME/CFS Clinician Coalition might be helpful: https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
 

Wishful

Senior Member
Messages
4,531
Likes
8,264
Location
Alberta
I second Rebeccare's recommendation of the Mayo Clinic article. It looks professional enough to convince a doctor.

I also recommend against initially presenting too much personal written material. I brought a list of questions to one doctor, since ME makes remembering such things difficult, and he waved it away and stated "I don't want to see it!". I think it implies that the patient is an obsessive hypochondriac or some such thing. Anyway, I suggest bringing any information you might need to consult if the doctor asks you a question, but don't wave sheets of notes at him. ;) If he looks askance at notes, explain that you have trouble remembering things, especially in stressful situations.

Good luck! :hug:
 
Messages
6,202
Likes
14,518
Location
South east England
When I finally figured out I had ME, I started to bring it up with my previous doctor, and he stopped me and said, "Don't let that become a mindset." I don't want to feel brushed off again.
Any chance you could see an me/cfs speialist @christiankatz ? Might open up a whole new world for you. Try and keep the points you want to make short and to the point @RyeRyeBread and start with the most relevant symptoms. Docs lose interest, so the first 5 minutes of the appointment are the time to make your main points. Good luck!
 

TiredBill

Senior Member
Messages
335
Likes
1,523
In many ways a ME/CFS diagnosis is still one of exclusions.

So being positive about trying to find any comorbidities or conditions that could cause or exacerbate your symptoms is generally a well-received approach in my experience. It is a good thing to rule other potential issues and it is possible you may have treatable issues in addition to ME/CFS.

Trying press a self diagnosis can have the opposite effect. Be honest. Describe what you experience.

Best of luck,

Bill
 
Messages
10,179
Likes
24,587
I second Rebeccare's recommendation of the Mayo Clinic article. It looks professional enough to convince a doctor.
My new plan- is to print out that Table 2 from the mayo report...take that to the doctor and attempt to systematically work thru getting those diagositics.

That seems less of a paper overwhelm. while looking logical and rational.

And the doc can then look up the Mayo paper if they want to in all that spare time they have.
 
Messages
8,474
Likes
22,911
Location
Massachusetts
Messages
97
Likes
248
Location
New Jersey, US
Trying press a self diagnosis can have the opposite effect. Be honest. Describe what you experience.
I'm planning on mentioning that my other doctor (PCP) mentioned ME/CFS first (which he did, he just called it cfs/post "mono" syndrome" instead), and that I'd like a second opinion and someone more up-to-date to help rule out differentials and eventually a possible diagnosis.

hopefully that'll work better than "hey i think i have me/cfs"
 
Messages
97
Likes
248
Location
New Jersey, US
thats an excellent plan!

but what kind of doctor is this? since its not your primary....
It's another PCP/Internal Med doctor. (possibly a mew one, replacing the other)
I like my regular PCP, but I do want a second opinion as somewhat of a validation,
and,
he is great with small things like colds/flu and saving you money, but he doesn't really dig below the surface too much.. So when he told me about [me]cfs, he basically gave me 3 sentences of very little (unhelpful) knowledge and sent me on my way with no guidance. So all that, and his usage of the outdated terms, kinda gives me the feeling that i should invest some time into finding a doctor willing to dig a little deeper 🤷‍♂️
 

Learner1

Senior Member
Messages
6,260
Likes
11,595
Location
Pacific Northwest
Would your goal of going to the doctor be to get treatment that improves your condition? If so, providing information that helps the doctor decide to run tests to see what's going on or helps the doctor to prescribe a treatment would be helpful.

I take these to a new doctor:
  • List of symptoms - fatigue, swollen lymph nodes, fever, exercise intoletance, dizziness, sleep disruption
  • Health history - bulleted list of any clues the doctor might follow, including allergies, illnesses (mono/Epstein Barr, COVID, etc), car accidents, back or joint problems, hormonal issues
  • Curated lab tests - anything showing abnormalities - CBC/CMP, viral tests, immune tests, hormone tests, nutrient tests (B13, D, iron, etc), MRI, etc.
  • NASA Lean Test results (see the Bateman Horne Center website for instructions)
I'm planning on mentioning that my other doctor (PCP) mentioned ME/CFS first (which he did, he just called it cfs/post "mono" syndrome" instead), and that I'd like a second opinion and someone more up-to-date to help rule out differentials and eventually a possible diagnosis.
The trap of having an ME/CFS diagnosis is most doctors become uncurious and most insurance companies won't pay for treatment if you have it. It is much more productive to have a ""mystery disease" and have the doctor curiously fille clues to find treatable problems. Most ME/CFS patients have multiple diagnoses if anybody cares to look, things like hypothyroidism, adrenal insufficiency, chronic herpes family viruses, Immunodeficiency, autoimmunity, anemia, mast cell activation syndrome, connective tissue disorders, etc.
In many ways a ME/CFS diagnosis is still one of exclusions.

So being positive about trying to find any comorbidities or conditions that could cause or exacerbate your symptoms is generally a well-received approach in my experience. It is a good thing to rule other potential issues and it is possible you may have treatable issues in addition to ME/CFS.
The 2015 IOM/NAS report on ME/CFS emphatically stated it is NOT a diagnosis of exclusion, people can and do have many different other conditions.

But, you are correct that being curious to find a bunch of other treatable issues is a good approach. My worst experiences on this journey have been when a new doctor decides all my problems are related to X, and stops there, when testing elsewhere has found my illness to be a complex combination of several issues.

Best wishes on your search for answers.
 
Messages
97
Likes
248
Location
New Jersey, US
Would your goal of going to the doctor be to get treatment that improves your condition? If so, providing information that helps the doctor decide to run tests to see what's going on or helps the doctor to prescribe a treatment would be helpful.

I take these to a new doctor:
  • List of symptoms - fatigue, swollen lymph nodes, fever, exercise intoletance, dizziness, sleep disruption
  • Health history - bulleted list of any clues the doctor might follow, including allergies, illnesses (mono/Epstein Barr, COVID, etc), car accidents, back or joint problems, hormonal issues
  • Curated lab tests - anything showing abnormalities - CBC/CMP, viral tests, immune tests, hormone tests, nutrient tests (B13, D, iron, etc), MRI, etc.
  • NASA Lean Test results (see the Bateman Horne Center website for instructions)
The trap of having an ME/CFS diagnosis is most doctors become uncurious and most insurance companies won't pay for treatment if you have it. It is much more productive to have a ""mystery disease" and have the doctor curiously fille clues to find treatable problems. Most ME/CFS patients have multiple diagnoses if anybody cares to look, things like hypothyroidism, adrenal insufficiency, chronic herpes family viruses, Immunodeficiency, autoimmunity, anemia, mast cell activation syndrome, connective tissue disorders, etc.
The 2015 IOM/NAS report on ME/CFS emphatically stated it is NOT a diagnosis of exclusion, people can and do have many different other conditions.

But, you are correct that being curious to find a bunch of other treatable issues is a good approach. My worst experiences on this journey have been when a new doctor decides all my problems are related to X, and stops there, when testing elsewhere has found my illness to be a complex combination of several issues.

Best wishes on your search for answers.
Thank you!

My main goal isn't necessarily treatment, moreso management. I'd like a medical professional to be able to back me up when it comes to any assistance i may need (accommodations at work/school, wheelchairs, etc.) I also hate not knowing, so i would prefer a "useless" diagnosis of me/cfs if it's correct - rather than avoiding it, or exchanging it for more treatable things. Of course, comorbidities exist, and if i meet criteria for them and they are treatable, that's a bonus lol

Basically, at this point, a doctor would help me most with a validating diagnosis [if applicable] (which would help my family believe me and allow me to have a name for this crap), and assistance getting aids that would increase my quality of life and allow me to continue working+going to school.
 

Learner1

Senior Member
Messages
6,260
Likes
11,595
Location
Pacific Northwest
Thank you!

My main goal isn't necessarily treatment, moreso management. I'd like a medical professional to be able to back me up when it comes to any assistance i may need (accommodations at work/school, wheelchairs, etc.) I also hate not knowing, so i would prefer a "useless" diagnosis of me/cfs if it's correct - rather than avoiding it, or exchanging it for more treatable things. Of course, comorbidities exist, and if i meet criteria for them and they are treatable, that's a bonus lol

Basically, at this point, a doctor would help me most with a validating diagnosis [if applicable] (which would help my family believe me and allow me to have a name for this crap), and assistance getting aids that would increase my quality of life and allow me to continue working+going to school.
It is very difficult to get aid or assistance without producing any evidence of your disability. The website "how to get on (disability)" Can give you some clues, but generally, in the US, a 2 day cardio pulmonary exercise test and autonomic testing Is the bare minimum for getting this.

Not knowing how old you are, you mentioned school, it sounds like you have a lot of years in front of you and not a lot of work history to be able to qualify for disability.

It might be prudent to think about what you'd like the rest of your life to be like. Do you want to spend the next 50 years like you are now? If you do nothing as far as treatment, it is unlikely that you will improve, and you may actually get worse to the point you are bed bound 100% of the time. I don't know about you, but I find this to be not very desirable.

Working I'm going to school require sustained effort over time and the ability to show up and do what you're supposed to do and produce the required work product. This typically requires mental and physical exertion, something that is challenging for most ME/CFS patients. And even if you can do it at one time or for a while, there's no guarantee that you'll be able to do it on an ongoing basis.

We are fortunate to have this illness at a time when there has actually been a lot of research done. The vexing thing is there is no one size fits all treatment, because there are about 25 or more known problems for patients with me / CFS and each one of us has a different subset of that large number. You may have 7, I may have 12, others will have different numbers, plus different comorbidities, different exposures to viruses, bacteria, different diets, different microbiomes, different toxic exposures, different stress levels, different genetics, etc. This has made one size fits all research to cure us all incredibly difficult.

This does not mean all is lost. There are a fair number of us who have read the research and worked with doctors to investigate various problems by doing appropriate medical testing and then trialing treatments when problems are found, in many times, combinations of treatments for this complex disease. Through these methods, many of us have improved to the point of being able to have a somewhat normal life. Not all of these experiments are successful, nor are they necessarily easy to come by, an educating ourselves on the science, and being persistent and finding and working with doctors who are curious and committed to helping us has paid off. These are complex illnesses, but treatment is possible, and the time to pursue this treatment is before one is in such bad shape that coming back from a cascade of difficulties is not as horrifically difficult.

As for your family, there is now a large body of information on this illness that you can share. I would look up the US Institute of Medicine / National Academy of Sciences 2015 report on ME/ CFS I'm sure the summary and diagnostic criteria with family. Another good resource is the recent ME/CFS Clinician's Coalition document for doctors and the recent Mayo Clinic proceedings discussion of ME / CFS. You might also look into what the NIH has been doing to study ME/CFS and how they are now studying long covid in comparison to ME/CFS. It is a very real disease with devastating consequences.

Good luck in finding help.
 
Messages
97
Likes
248
Location
New Jersey, US
Thank you, i will check out those resources :)

It is very difficult to get aid or assistance without producing any evidence of your disability. The website "how to get on (disability)" Can give you some clues, but generally, in the US, a 2 day cardio pulmonary exercise test and autonomic testing Is the bare minimum for getting this.

Not knowing how old you are, you mentioned school, it sounds like you have a lot of years in front of you and not a lot of work history to be able to qualify for disability.
By accommodations i meant moreso insurance coverage for a wheelchair, not so much disability just yet (possibly in the future, but i believe i can still work part-time if i had a chair). I'm 20, currently taking a break from college. I've only worked 1 job and for not very long, i had to quit because of my me/cfs symptoms.

It might be prudent to think about what you'd like the rest of your life to be like. Do you want to spend the next 50 years like you are now? If you do nothing as far as treatment, it is unlikely that you will improve, and you may actually get worse to the point you are bed bound 100% of the time. I don't know about you, but I find this to be not very desirable.
By management vs treatment, I meant pacing over trial medications/iv stuff - So yes i would like some form of treatment but I'm not wanting to test out 500 drugs and supplements, I'd like to focus more on coping with what energy i have now, first. I'm 100% for treatment of comorbidities if any (like possible pots for example), i was moreso saying i dont have a current interest in seeking "me/cfs specific" medical treatments, as there aren't any official ones yet- and I'd like to focus on rejoining society and returning to school/work if possible. Sorry if i worded it confusing, my mistake.
 
Messages
10,179
Likes
24,587
My main goal isn't necessarily treatment, moreso management. I'd like a medical professional to be able to back me up when it comes to any assistance i may need (accommodations at work/school, wheelchairs, etc.) I also hate not knowing, so i would prefer a "useless" diagnosis of me/cfs if it's correct - rather than avoiding it, or exchanging it for more treatable things. Of course, comorbidities exist, and if i meet criteria for them and they are treatable, that's a bonus lol
I ended up in the bizarre situation of having greater and greater difficulties driving. So going to meetings and freeways and hours of driving became nearly impossible due to my eye issues.

But no eye doctor will help me with my eye issues. very debilitating.

So eye doctor boots me out of the office, and nothing has happened. In front of 4 other patients, I stated: BUT I can't DRIVE....

"Your eyes are fine".

Wow. I'm standing in the parking lot. Wow.

so this is how horrible the system is. I think he thought I was trying to get disability. So CUT that off immediately and refuse to even help the patient losing their eyesight.....
 

Learner1

Senior Member
Messages
6,260
Likes
11,595
Location
Pacific Northwest
i was moreso saying i dont have a current interest in seeking "me/cfs specific" medical treatments, as there aren't any official ones yet- and I'd like to focus on rejoining society and returning to school/work if possible. Sorry if i worded it confusing, my mistake.
There are many medical treatments appropriate for this illness, depending upon what your tests say:
  • T3 or T4 for hypothyroidism or dick thyroid syndrome
  • Hydrocortisone for adrenal insufficiency
  • Testosterone for low T
  • DHEA and pregnenolone
  • Antivirals like Valcyte, Valtrex, Famvir, etc
  • Antibiotics for Lyme and co-infections, atypical pneumonias,cetc.
  • Intravenous immunoglobulins for immunodeficiency or autoimmunity
  • Low dose naltrexone, Rituximab, Bortezimub and other immunomodulators
  • Glutathione, vitamin C, B12, folate, Kuvan, etc. for the oxidative and nitrosative stress found in ME/CFS patients
  • Amino acids for amino acid deficiencies found in ME/CFS patients
  • Huperzine A, pyridostigmine, or neostigmine, fluidicortisone, and beta blockers for POTS
  • Zinc, copper, iron, magnesium, manganese, found low in many ME/CFS patients
  • Mitochondrial nutrients like CoQ10, MitoQ, carnitine, B2, BCAAs, NAD+, NADH, NMN or NR
  • Spinal surgery, prolozone, prolotherapy, or cortisone shots for spinal issues
  • Probiotics, rifampin and fecal transplants for microbiome issues

I don't mean to be harsh but there's a lot you can do today sitting in your wheelchair. You just have to look for indications that they're needed. We have the best chance of improving before our bodies become depleted and resources and a cascade of issues happens stemming from the original trigger.

I know it's difficult to be ill at your age, but this is a great learning opportunity to learn a you can about this disease. My daughter had a similar serious illness at 19, and what she learned along the way of getting better led to a PhD and a career in the medical biology field - she's over 30 now.
 
Last edited: