Doctor visit blues…don’t know what to do

[Hope_eternal]

I’m at the end of my rope y’all. Today I took my son to see a doctor who’s supposed to be an expert in CFS and left there feeling deflated and sad. I had such high hopes I should’ve known better. He suggested we put my son on a stimulant called provgil (modafinil). That sent off red flags. Not sure I feel comfortable with that. I ask if stimulating his body could further crash him and he told me he thinks my son’s issue is a brain issue. What? So I’m supposed to put my son on a stimulant because he thinks it’s a brain issue? He didn’t even look over all the records we had. He also said he needs to have a sleep study which I’m ok with but said he thinks that’s the main problem and once we get that straight he will get better Idk 🤷‍♀️ my brain hurts, my heart is heavy and I just feel defeated.

 

[hapl808]

I’m at the end of my rope y’all. Today I took my son to see a doctor who’s supposed to be an expert in CFS and left there feeling deflated and sad. I had such high hopes I should’ve known better. He suggested we put my son on a stimulant called provgil (modafinil). That sent off red flags. Not sure I feel comfortable with that. I ask if stimulating his body could further crash him and he told me he thinks my son’s issue is a brain issue. What? So I’m supposed to put my son on a stimulant because he thinks it’s a brain issue? He didn’t even look over all the records we had. He also said he needs to have a sleep study which I’m ok with but said he thinks that’s the main problem and once we get that straight he will get better Idk 🤷‍♀️ my brain hurts, my heart is heavy and I just feel defeated.

It's extremely hard to deal with this stuff. Bad enough how hard the underlying issue is, but we usually have to deal with many years of bad advice from friends and family and even physicians and specialists, all making us worse. I lost the ability to walk because of a terrible CFS specialist who was so aggressive in his physical exam that he damaged my legs permanently.

Trust your intuition and own experience. No one is looking out for your son's best interests except you. We should be able to rely on specialists and experts, but sadly we can't. So we have to carefully manage them as well, which just adds to the burden and exhaustion. The most highly credentialed and respected specialists sometimes do the most damage because we let our guard down more and trust them.

As for modafinil, I did end up trying it eventually. I took less than a quarter of a low dose to start. It felt pretty good initially - like having two cups of coffee in a row without the jitters. Then led to a three day crash, but not a terrible one. Then again, I took around 20mg or so (IIRC it was less than 1/4 of a 100mg dose).

Your son is lucky to have you, and I'm sorry you're dealing with this.

 

[L'engle]

I tried modafinal and also felt better then crashed. It's strong stuff. For a sever patient it could be overwhelming. If you and your son do decide to try it then very small doses are probably safest.

It's discouraging to be so misunderstood by doctors, especially those claiming to be experts in CFS.
That sounds more like a sleep specialist who somehow thinks they can treat cfs as just idiopathic hypersomnia. The sleep specialist I saw didn't take it seriously either. 'Not a career-buster' he said. They tend to be concerned with narcolepsy and not really much else.

A sleep study could be quite draining as well as he would have to spend the night in an unfamiliar environment covered in sensors. I didn't sleep at all during my sleep study as the room was hot, airless and dry. It is mainly useful to rule out sleep apnea. The end result was a modafinal px anyway.

You are doing your best for your son and that improves his chances more than just about anything.

 

[Hope_eternal]

I lost the ability to walk because of a terrible CFS specialist who was so aggressive in his physical exam that he damaged my legs permanently.

This is heart wrenching. I’m so very sorry this happened to you. I’m astounded on the sheer dismissal of ME suffers and their account of their experience with the illness. Why is it so hard for them to hear and conceive what you/we are saying? That should never have happened to you if the doctor was listening to/hearing you. This hurts my heart for you.

Then again, I took around 20mg or so (IIRC it was less than 1/4 of a 100mg dose).

How did it go that time?

Trust your intuition and own experience. No one is looking out for your son's best interests except you. We should be able to rely on specialists and experts, but sadly we can't

It’s very sad. And honestly I feel like they make things more confusing. Not one doctor had been on the same page with his care. All saying opposite things. I’m trying very hard to rely on my intuition. It’s very foggy because I love him so much and don’t want to fail him. I’m so scared. Sometimes it’s hard to make a decision from this place.,

 

[Hope_eternal]

tried modafinal and also felt better then crashed. It's strong stuff. For a sever patient it could be overwhelming. If you and your son do decide to try it then very small doses are probably safest.

Thank you! He wants to start him on 100mg. I asked him if that was the lowest dose and he said yes. He said it a very safe drug and there isn’t likely to be any issues for him to take it. Idk my first instinct was that it doesn’t seem like a good idea. My son crashes if he takes 2 showers in the same week. I don’t think a stimulant is the answer. It doesn’t feel right. I appreciate you sharing your experience. I’m going to shelf this for now because I’m just so upset and overwhelmed and can’t think straight.

sleep study could be quite draining as well as he would have to spend the night in an unfamiliar environment covered in sensors. I didn't sleep at all during my sleep study as the room was hot, airless and dry. It is mainly useful to rule out sleep apnea.

Yah sleep studies are horrendous. The one he suggested for my son will be in our home. We will hook him up here and it will collect data. Probably still uncomfortable but hopefully not as taxing as going to a facility. I’m sure sleep won’t be the best though with all the wires and hookups.

You are doing your best for your son and that improves his chances more than just about anything.

😭 Thank you. I truly hope it does. I am terrified I’m not doing a good enough job. I wish I was braver and smarter. I wish I could know the answer to this. I am trying very hard.

 

[Tammy]

Idk my first instinct was that it doesn’t seem like a good idea. My son crashes if he takes 2 showers in the same week. I don’t think a stimulant is the answer. It doesn’t feel right

I don't think it's the answer either. Not even close.........and it could cause harm. I think your instincts are right on and you are not failing your son. Also, don't let the Dr. intimidate you if you decide not to follow his suggestion. You are your son's best advocate.............not the Doctor. Just my opinion....................but the Dr. doesn't sound like a CFS expert in the slightest. A stimulant and sleep study. I'm not impressed in the least. Know that you are doing the absolute best that you can. Sending hugs

 

[hapl808]

Thank you! He wants to start him on 100mg. I asked him if that was the lowest dose and he said yes. He said it a very safe drug and there isn’t likely to be any issues for him to take it. Idk my first instinct was that it doesn’t seem like a good idea. My son crashes if he takes 2 showers in the same week. I don’t think a stimulant is the answer. It doesn’t feel right. I appreciate you sharing your experience. I’m going to shelf this for now because I’m just so upset and overwhelmed and can’t think straight.

Same. I shower 5-10 times per year at best. I got the lowest dose as well - 100mg - then split it into quarters and took the smallest one. So about 20mg. Felt a bit better for the rest of the day - like two cups of coffee with no jitters. Nothing amazing, but nice. Tried not to work too much on the computer since just wanted to judge modafinil. Led to a maybe 3-5 day crash. Not a horrible one, but not good. Didn't try it again.

Would be nice if stimulants worked, but rare that they do and definitely potential for harm no matter what physicians say. Their feeling is, "I've never heard of them causing harm," but if your son took them and reported the harm, they wouldn't believe him and they'd keep saying the same thing. They have selective hearing.

 

[Hope_eternal]

I don't think it's the answer either. Not even close.........and it could cause harm. I think your instincts are right on and you are not failing your son. Also, don't let the Dr. intimidate you if you decide not to follow his suggestion. You are your son's best advocate.............not the Doctor. Just my opinion....................but the Dr. doesn't sound like a CFS expert in the slightest. A stimulant and sleep study. I'm not impressed in the least. Know that you are doing the absolute best that you can. Sending hugs

❤️❤️ thank you 🙏

 

[L'engle]

Yes they are fond of saying 'it's well tolerated' and 'everyone improves on this' but when you do report problems they just ignore it.

 

[maddietod]

I saw Dr Teitelbaum when he and I both lived in Annapolis in the 90s. He was kind and attentive but not helpful. Years later I tried Dr. Weiss, who was also kind and attentive but not helpful. He decided I needed estrogen, based on nothing, and that was a terrible idea. I came away feeling that he's in it for the money, rather than out of an interest in and commitment to researching testing and treatment options.

To be fair, I later went down to Florida and saw Irma Rey, who works closely with Nancy Klimas. She did a lot more testing, but nothing treatable came up. Genetic and cytokine and killer cell stuff came up, but there were no treatments.

The only person I wish I could see now is Dr. Peter Rowe at Johns Hopkins, but he only works with pediatric CFS.

 

[Hope_eternal]

I saw Dr Teitelbaum when he and I both lived in Annapolis in the 90s. He was kind and attentive but not helpful. Years later I tried Dr. Weiss, who was also kind and attentive but not helpful. He decided I needed estrogen, based on nothing, and that was a terrible idea. I came away feeling that he's in it for the money, rather than out of an interest in and commitment to researching testing and treatment options.

To be fair, I later went down to Florida and saw Irma Rey, who works closely with Nancy Klimas. She did a lot more testing, but nothing treatable came up. Genetic and cytokine and killer cell stuff came up, but there were no treatments.

The only person I wish I could see now is Dr. Peter Rowe at Johns Hopkins, but he only works with pediatric CFS.

I don’t understand how they can live with themselves. It seems predatory. Dishonest. Maybe they actually believe their treatments are beneficial but I don’t see how when there are stories upon stories I’m hearing that their treatments aren’t working., That’s a shame about Dr Peter Rowe. What do you like about him? I wonder if would have a referral to someone that treats like he does but in adults? . I suppose a 20 yr old isn’t considered pediatric 😩

 

[hapl808]

I don’t understand how they can live with themselves. It seems predatory. Dishonest. Maybe they actually believe their treatments are beneficial but I don’t see how when there are stories upon stories I’m hearing that their treatments aren’t working.

“It is difficult to get a man to understand something, when his salary depends on his not understanding it.”​

-Upton Sinclair


And beyond that, their whole identity becomes wrapped up in it. Physicians spend many years of their lives training and studying. If they spent hours reading books that said a patient should respond to A treatment in X way, how dare the patient question that book.

 

[wabi-sabi]

He also said he needs to have a sleep study which I’m ok with but said he thinks that’s the main problem and once we get that straight he will get better

Well, I think a sleep study sounds reasonable. Sleep is one of our major problems and if that can improve there is potential to feel better. It's not all of the problem, but is one of the pieces that needs to be fixed. I don't know about the stimulants, but I highly recommend sleep!

Getting your hopes up and then having them dashed is the painful round that we've all been through. It's OK not to be hopeful sometimes when it gets too tiring.

 

[maddietod]

I don’t understand how they can live with themselves. It seems predatory. Dishonest. Maybe they actually believe their treatments are beneficial but I don’t see how when there are stories upon stories I’m hearing that their treatments aren’t working., That’s a shame about Dr Peter Rowe. What do you like about him? I wonder if would have a referral to someone that treats like he does but in adults? . I suppose a 20 yr old isn’t considered pediatric 😩

To see it in the most positive light, nobody had any idea what was going on with CFS, but at least they named it for me and believed what I told them. And still, nobody knows what to do for most of us.

Other people on this site know where to find lists of things to test for. Dr. Weiss would probably work with you on testing if you came in with a list of ideas.

Cort did an article on Dr. Rowe a few years ago. You could contact his clinic about the cut-off age. The site says children and young adults. Also, there are ideas sprinkled throughout Cort's article, and in the Patient Resources linked from the clinic's homepage.

 

[Hope_eternal]

“It is difficult to get a man to understand something, when his salary depends on his not understanding it.”​

-Upton Sinclair


And beyond that, their whole identity becomes wrapped up in it. Physicians spend many years of their lives training and studying. If they spent hours reading books that said a patient should respond to A treatment in X way, how dare the patient question that book.

You are so right., We have seen that time and time again with other illnesses my son has had. In fact if we had listened to them 18 yrs ago I’m certain my son wouldn’t be here. He was 2 and sicker than I’ve ever seen. Vomiting ever 20 mins and disoriented. I kept taking him to the doctors and was told he had flu. We took him to the ER and again were told he had flu. I protested and told them please look further he is very very ill, Thankfully the doctor admitted him to the hospital telling me there really wasn’t a reason he should do this but for me he was going to evaluate him over night.. Every day I was told he had the flu and every day I said no this isn’t the flu!! 4 nights later they did an exploratory surgery because his stomach became extremely distended. They found he had a severed intestine 😩🥹 One year later the same thing happened. I was told the same thing and I said that the year before he had a severed intestine and presented the same way. They told me not likely because he would be in agony and wouldn’t be able to poop. He had done a poop that day so they insisted it was the flu. I protested again. They did admit him. 4 days later he was in surgery again for a twisted bowel. So I agree and know first hand, they aren’t always right and illness aren’t always textbook.

I don’t always trust doctors. It’s hard to move forward when you’ve been let down so much.

 

[Jyoti]

What do you like about him? I wonder if would have a referral to someone that treats like he does but in adults? . I suppose a 20 yr old isn’t considered pediatric

I would definitely check with Peter Rowe's office to see if they would take a 20 year old. I think they very well might. Like @maddietod, I'd give my eyeteeth to see him. He understands ME, he has a long standing commitment to people with ME, he is smart, thinks outside the box and has illumined some very critical aspects of the illness that others did not see, and finally, he appears to be a genuinely kind and caring man.

 

[maddietod]

I'm very worried by any doctor who doesn't look over the health records of a new CFS patient, and prescribes heavy-hitting medication.

A home sleep study is really easy to do, but when I had mine last year I never saw a sleep doctor. The test said 'mild sleep apnea' and a company shipped me a cpap machine. Which of course didn't work because the pressure wasn't calibrated for me and it kept me awake. So if you decide to do the test, ask what support you get after, or see a sleep doctor on your own after the test.

 

[maddietod]

I would definitely check with Peter Rowe's office to see if they would take a 20 year old. I think they very well might. Like @maddietod, I'd give my eyeteeth to see him. He understands ME, he has a long standing commitment to people with ME, he is smart, thinks outside the box and has illumined some very critical aspects of the illness that others did not see, and finally, he appears to be a genuinely kind and caring man.

I called his office years ago, to ask if they could recommend anybody for adults, and he answered the phone. He's a very warm and kind man.

 

[Hope_eternal]

To see it in the most positive light, nobody had any idea what was going on with CFS, but at least they named it for me and believed what I told them. And still, nobody knows what to do for most of us.

Other people on this site know where to find lists of things to test for. Dr. Weiss would probably work with you on testing if you came in with a list of ideas.

Cort did an article on Dr. Rowe a few years ago. You could contact his clinic about the cut-off age. The site says children and young adults. Also, there are ideas sprinkled throughout Cort's article, and in the Patient Resources linked from the clinic's homepage.

Thank you. I remember calling JH about 8 months ago and was told their ME program was a study and you had to live in MD to be considered for it. We don’t live in MD. You also couldn’t have any other illnesses and since he has Crohns that left him ineligible unfortunately. I’m not sure if I called the number you linked so I will try that today. I appreciate you letting me know about him. I hope we can get in to see him. Thank you 🙏

 

[Emmarose47]

Docs, pharmaceuticals and m. E cfs urrrrr...
I have no good exp to report from the UK.
'it's a brain thing' ah OK would u kindly expand on that please?

My understanding is m. E cfs is an inflammation of the brain and spine. I certainly experience a lot of brain swelling.
I'm treating mine with medical medium Anthony Williams protocol. Bringing the inflammation down via diet and natural anti virals