Disagreement or sub-standard care?

[minkeygirl]

Check out dr Garth nicolson. He finds a strong link between GWS and cfs

Www.immed.org

You aren't really looking for anything more than any of us are. We have all run into the same walls. Being in the military doesn't make you exempt from that.

Use your energy in ways that wll help you.

 

[sarah darwins]

When I asked her if she'd consider other possibilities given that I don't have the typical signs of asthma and an inhaler isn't effective, I was told no (no explanation given). The nurse who was present for my asthma testing had never seen anyone react to the test the way I did or fail to get relief from the inhaler (as I did).

Yeah, that is pretty substandard and I think you could reasonably expect better. What you do about it, I wish I knew, but good luck. Keep fighting. I'm sure you will.

 

[brenda]

@Effi It was a member of the military who said I disagree with the care, and it's not sub-standard.

It seems like my doctors use WebMD to treat and diagnosis, as they are pulling up information on their iPhones when I explain what's going on. Honestly, I just want them to objectively evaluate all my symptoms as a whole. Not to send me to see other doctors and get 10 different diagnoses which all likely stem from one underlying condition. Then for situations like my 'asthma', I want them to believe me when I say an inhaler doesn't help. There were so many anomalies when the doctor did the metacholine challenge that my doctor completely ignored. The nurse even made mention of it, when after inducing an 'asthma' attack it took 6 pumps of an inhaler and over an hour of waiting to get back into a normal respiratory pattern. The doctor says it's 'mild asthma', but I don't feel like the symptoms are in line with asthma at all.

Àfter my family were exposed to pesticides sprayed in our home, my son developed what seemed to be asthma but did not respond to treatment as was expected. Years later when l realised that our sickness had come from the pesticide, l read that it was in fact lung damage from the chemicals that caused his symptoms.

 

[*GG*]

I wish you the best of luck. I would say you are getting sub-standard care.

This really shouldn't surprise anyone in the USA, look at how many Vets DIED waiting for service(s).!

Time to rip it apart and start anew, the bureaucracy is a Major part of the problem!

GG

 

[ahmo]

Best of luck to you. @JaimeS has put together 2 excellent docs as references for docs, a longer and a shorter version, see her blogs.

 

[alex3619]

So is this simple a case of disagreement with my doctors or would you consider this sub-standard care?

First problem is, standard care is far below world's best practice. So it can be abysmal care and still standard care for poorly understood disorders and diseases.

Second problem is, which specialist? They are almost non-existent, and many claiming to be specialists have dangerously bad levels of knowledge. If a problem is well understood, with a large body of research, and is considered part of a standard medical specialty, then there are options. Otherwise most docs would not even know who to send you to.

At the very least you might consider printing or buying a copy of the IOM ME/CFS report to show them, or just print out the overview and tell them its free to download. Doctors tend to be authority driven, and its the most authoritative (though slightly flawed) report there is, and the only one using evidence based standards for a serious review. There are also several Gulf War reports I think, but I also think they are in some cases less than ideal ... not that I have read them in depth, just warning to be careful.

Military who were deployed to the Gulf also have other potential issues. I am not up to date on this so do not want to say more. I do believe that some veteran organizations have investigated this. You might like to ask around.

Good luck.

 

[alex3619]

On atypical asthma, could you say more?

I have an atypical asthma like condition too. Asthma meds most likely do not work on it, but so far most docs have not suggested it. I can pass most asthma tests, but it does not stop my lungs shutting down suddenly. I have found the plant extract resveratrol mostly controls my problem, and I also found it was linked to a food allergy, probably wheat.

 

[JaimeS]

The doctors won't test me for POTS, because I quote "the test is too barbaric".

I find that fascinating, @kristysmiles , because I found the tilt-table test to be surprisingly horrifying. But perhaps they meant it was too inaccurate to use. 'Barbaric' is such a general term.

-J

 

[JaimeS]

MY doctor changed his mind after seeing myself and other patients of his sent into the CBT/GET wars and come out without improvement, only to find ourselves blamed for the failure of their treatment.

Thanks, @worldbackwards - I'm encouraged by this. AND it's terrible that it took a worsening of your condition before a physician could understand.

Also: 'panglossian'. Great word.

-J

 

[Valentijn]

Their refusal to appropriately diagnose you does make it look like they're trying to save some cash regarding disability and medical expenses.

Get copies of everything, take notes of symptoms and dates, etc, and be prepared to kick up a fuss. I have no idea what your legal options are while in the army or afterward, but it's a good time to start figuring that out.

 

[kristysmiles]

@alex3619
I use the term 'specialist' loosely. I'm mostly referring to someone who has knowledge about the disease, believes it's real and if I'm lucky is familiar with potential treatments of some of the symptoms (instead of psych referrals). As for the asthma, I don't think it's a food allergy (I was also tested for celiac). It mostly acts up in the morning before I've eaten anything. It feels like my lungs are drawing in enough oxygen (not gasping for breath), but I need to slow down to give my body time to get the oxygen to the rest of my body. When I cough, it feels like my body is trying to expel something from my lungs.

I've been in contact with some veteran organizations, and despite advocating and raising funds for these types of conditions they don't seem to have any resources for patients.

 

[alex3619]

. I'm mostly referring to someone who has knowledge about the disease, believes it's real and if I'm lucky is familiar with potential treatments of some of the symptoms (instead of psych referrals).

The problem is this is probably far less than 15% of doctors. Most of those are not up to date either. We simply do not have enough properly trained doctors, and this appears to be correct everywhere. The best we can hope for in most cases is find a doctor who is willing to learn, and then partner with them. This is also rare though.

There needs to be a massive improvement in doctor training if this problem is ever going to be fixed.

I usually recommend for people who have a less understood medical condition to do some research and find a doctor who has the same thing, or a close family member does. They are usually at least trying to stay up to date. Once you have found such a doctor you might have more leverage.

 

[*GG*]

Not sure if you have seen this @kristysmiles

GG

http://www.publichealth.va.gov/exposures/gulfwar/military-service.asp