Undiagnosed as of yet, just hoping for discussion/validation and advice on talking to my doctor.

[edriscoll]

@Stardust  We have all been where you are right now and you have taken some really important steps already in self-care; reaching out to others for help and doing your own reading and learning.  But you still need a doctor and the correct testing.  There is so much great information on this thread already so I won't repeat it all.  But I will add that our YouTube channel has many great original videos about the diagnosis process and finding good care.  This video is about the struggle in finding a doctor and how to advocate for yourself.  It may be helpful to you.  I wish you the best of luck.

https://youtu.be/mu2MfJTVD18

 

[Stardust]

8 hours ago, Pistol said:

@MikeO @Stardust I know that most doctors are being pressured by insurance companies to only order tests for certain ICD10 codes. In the old days a doctor could just order any test they wanted for any reason, like "rule out something". Now there are set guidelines which only qualify a patient for testing if there are certain symptoms or abnormalities in exam or lab testing that have to be present in order to "earn" a test. MRI's are a perfect example - they are very expensive, so a doctor has to justify ordering one. Often there have to be other tests done first that were negative before a MRI can be done. 

 

That makes sense... Still so dumb though. I'll never understand why an insurance company gets to have any say over a doctor's recommendation (at least here in the US). 🙄

[Stardust]

5 hours ago, edriscoll said:

@Stardust  We have all been where you are right now and you have taken some really important steps already in self-care; reaching out to others for help and doing your own reading and learning.  But you still need a doctor and the correct testing.  There is so much great information on this thread already so I won't repeat it all.  But I will add that our YouTube channel has many great original videos about the diagnosis process and finding good care.  This video is about the struggle in finding a doctor and how to advocate for yourself.  It may be helpful to you.  I wish you the best of luck.

https://youtu.be/mu2MfJTVD18

 

Thank you so much! I actually have been watching a lot of those and they've been great.

[Stardust]

On 3/15/2023 at 7:06 PM, Sarah Tee said:

@Stardust, it sounds like checking your blood pressure and heart rate would be worthwhile.

@Sarah Tee Sorry to bother you again! I did manage to get a BP cuff and try it. Unfortunately it had constant errors and we thought it might just be defective but in looking in reviews of others on Amazon it seems that all of them are wildly inaccurate. I'm also plus sized with upper arms larger at the top than bottom (and right between cuff sizes). I planned to get a larger one next, but I can't afford one of the more expensive ones so I wasn't sure what might be the best option.

Would one of the fingertip pulse oximeters even be worth trying or should I keep trying to get a BP cuff that works for me? I was hoping to have some readings to give my doctor before my visit in a week and a half but at this rate I'm not sure I'll have any. 😕

[GasconAlex]

13 hours ago, Stardust said:

@Sarah Tee Sorry to bother you again! I did manage to get a BP cuff and try it. Unfortunately it had constant errors and we thought it might just be defective but in looking in reviews of others on Amazon it seems that all of them are wildly inaccurate. I'm also plus sized with upper arms larger at the top than bottom (and right between cuff sizes). I planned to get a larger one next, but I can't afford one of the more expensive ones so I wasn't sure what might be the best option.

Would one of the fingertip pulse oximeters even be worth trying or should I keep trying to get a BP cuff that works for me? I was hoping to have some readings to give my doctor before my visit in a week and a half but at this rate I'm not sure I'll have any. 😕

Most issues with the cuff are due to placement on the arm and making sure that it seals properly on itself so does not move in the test. If you can get someone to show you the correct placement on you this might help. Another technique (which is pushed here) is taking 3 readings in a row, 3 times a day for 3 days. If you discount readings that are obviously bizarre the 3 readings should give you a pretty good average. Taking the readings 3 times a day should show variation within the day and taking it for 3 days should hopefully give consistency.

Another thing that throws off BP cuffs is if you move your arm or hands during the test. This includes unintentional muscle tremors that throw off the readings.

Pulse oximeters are fairly good but can have errors particularly if you use nail polish, some skin tones or if you have poor circulation. I haven't found much difference between the more expensive ones and the cheaper ones (15€) as long as they have been validated. They are pretty good at showing heart rate variability on standing.

[Stardust]

17 hours ago, GasconAlex said:

Most issues with the cuff are due to placement on the arm and making sure that it seals properly on itself so does not move in the test. If you can get someone to show you the correct placement on you this might help. Another technique (which is pushed here) is taking 3 readings in a row, 3 times a day for 3 days. If you discount readings that are obviously bizarre the 3 readings should give you a pretty good average. Taking the readings 3 times a day should show variation within the day and taking it for 3 days should hopefully give consistency.

Another thing that throws off BP cuffs is if you move your arm or hands during the test. This includes unintentional muscle tremors that throw off the readings.

Pulse oximeters are fairly good but can have errors particularly if you use nail polish, some skin tones or if you have poor circulation. I haven't found much difference between the more expensive ones and the cheaper ones (15€) as long as they have been validated. They are pretty good at showing heart rate variability on standing.

Thank you for this! I don't actually have anyone more knowledgeable than I am to help, but my partner was trying. It was difficult because it was almost as wide as my arm is long and it kept sliding down even when it was tight enough on top. Turns out that the product listing was wrong about its size and it was too small anyway. I was trying to stay as still as possible, though.

Thank you for the input about the pulse oximeter too! I'll have to see what I can find.

[Pistol]

@Stardust if you buy a BP monitor at a retail pharmacy the staff can help you find the right product, and they can show you how to use it. 

[Stardust]

@Pistol I'll have to see if I can find an affordable one, but I'll look into it. Thank you for the idea!

[EveB]

Hi Stardust,

I'm a newbie here, but came to find answers to some questions I have and saw your post. I have experience with both Medicaid and advocating for myself. A lot of what you posted resonates with me. Your symptoms are similar and also, I bet you have more. I have noticed that given time and the right people, more dots get connected and there are those AHA! moments.

Depending on what state you are in and the dynamic of your area, yes, you don't get to be too choosy with specialists, but you can look for a PCP that you gel with. I've gone through a few. I signed on to Medicaid in 2018 while I was finishing up school and income was low. I thought nothing could happen to me but an emergency, so it was my backup. Now, functionally disabled, I'm kind of stuck for the moment. The hope is to have these wonderful doctors help me enough to get off of it. 

With that in mind, I have gotten pushier, which is not my nature. I've put aside the idea that I'm not deserving because of Medicaid. It helps to be direct about the symptoms, but simple enough that the doctors can control the questions they want to ask and the diagnosis they need to treat you through Medicaid. I've had some doozies that weren't even valid, but it got me treated anyway. I try to lead them to what I already suspect without saying what I suspect. For instance, my first symptom was debilitating gut pain and the inability to safely eat food other than bananas and rice. I also passed out when I ate and developed sleep issues. This is what I told the doctor. Every time I went in and until the basic tests were exhausted and I was getting worse. Blood work showed I was anemic. Then I pushed for a referral to GI. A few times. The PCP relented and referred me. Same with GI doc. Any time a new symptom piled on, I brought it up. If a test showed something out of the ordinary, I asked about it. Some doctors are gatekeepers with referrals, others are generous. It's good to sort out who is generous. Some of the offices don't have the staff to do it. I scheduled follow ups as allowed. The GI doctor was happy to get me out of his hair when everything seemed normal (it wasn't) and referred me to the Immunologist and Rheumatologist for joint pain and outsized allergies and reactions that added onto the GI junk. He recommended a low histamine diet. Then my heart got involved, I was scared and went to the ER. The doc recognized POTS and also the other stuff I already had going on. She referred me to cardiology and obgyn for good measure. Having chest pain helped me out here.

I saw the rheumatologist, thinking I would just be blown off. He was the first doctor to actually look at everything. He referred me to cardiology because my sitting hr was 115 and standing was 30+ beats faster. I didn't even bring it up. He said I needed to see someone who thought outside the box and knew who that should be. He requested a historical review of my colon pathology. I didn't ask him to or know he would. I didn't even know you could do this. The pathology showed significantly higher than normal mast cells in my gut. Saw the cardiologist, she diagnosed POTS pretty quickly and an echo to rule out other issues. On follow up, the rheumatologist diagnosed hEDS and said he is certain I have MCAS too after pathology. Said he's been seeing someone like me weekly and since 2016. Seeing a new immunologist next month. have another new PCP who is okay.

This was all on Medicaid and I am grateful for it. Doctors do seem to like to be the ones to diagnose. 🙂 They have limited time. Some are more patient than others. I think what stood out with the good docs I see, is that they really want to be experts in their field and had a tiny bit of humility to listen and most importantly, ask the right questions and dig. They also took the time to read my chart thoroughly. Pretty soon doctors who don't recognize these illnesses are going to be behind the curve. I don't want to see a doctor that I have to beg or convince. My time on this earth is limited too.

I hope you get the good care you need. Stay strong and persistent. Yes to tests. Keep lists like you have! They help so much when brain fog gets involved and you need to communicate for help.

[Stardust]

On 3/22/2023 at 1:47 PM, EveB said:

Hi Stardust,

I'm a newbie here, but came to find answers to some questions I have and saw your post. I have experience with both Medicaid and advocating for myself. A lot of what you posted resonates with me. Your symptoms are similar and also, I bet you have more. I have noticed that given time and the right people, more dots get connected and there are those AHA! moments.

Hi @EveB! Thank you so much for taking the time to write such a thoughtful response. Sorry that I didn't reply sooner; the past couple of days have been particularly miserable.

I definitely have more symptoms! lol I left a lot out to try to keep the post shorter. I've definitely been having those "Aha!" moments and I'm really hoping to try to steer my doctor toward them too.

My I really like my primary in the few times I've seen her, I just hope that when I come in with something this "big" that she doesn't dismiss it all. I've definitely gotten referrals from her before for other stuff so I'm hopeful but very nervous.

I'm sorry that you also had to have such a runaround with them but I'm glad you finally got some answers! It was well earned.
 

On 3/22/2023 at 1:47 PM, EveB said:

This was all on Medicaid and I am grateful for it. Doctors do seem to like to be the ones to diagnose. 🙂 They have limited time. Some are more patient than others. I think what stood out with the good docs I see, is that they really want to be experts in their field and had a tiny bit of humility to listen and most importantly, ask the right questions and dig. They also took the time to read my chart thoroughly. Pretty soon doctors who don't recognize these illnesses are going to be behind the curve. I don't want to see a doctor that I have to beg or convince. My time on this earth is limited too.

It's funny because with their limited time I always felt like I'd be more helpful by just presenting a list of "here's what I experience and why I think it leads to this," but I'm going to try really hard not to do that. lol I did mention in my request for an appointment what I wanted to discuss (and used diagnosis names), but hopefully that will just get the ball rolling in her head while she's hearing all the symptoms.

I'm going to have to learn to be pushier like you did. I don't look forward to it. 😩 Then again, maybe I'll get lucky and she'll just refer me out! I was planning to bring her the contact info of one of the more local dysautonomia specialists and ask that if she doesn't want to refer me to anyone else or look further could she please just refer me to them instead.