Now what?

[Whoops]

I introduced myself a while back and mentioned that I had an appointment with Nathan Holladay here in Salt Lake City, UT. I managed to get in and saw Nathan Holladay 3 days ago. We spent about 4.5 hours going through the paperwork I had to fill out regarding my symptoms as well as the test results and notes from all the physicians I have seen to date. He is a very nice person and really took the time to listen. I left our appointment feeling a little let down though. At the end of the appointment he said I met the criteria for ME-CFS but he also found neuropathic evidence that didn't fit the typical profile of ME-CFS and as a result did not give me a diagnosis. He is referring me out to have a small fiber nerve biopsy since I have some lack of feeling in my feet and legs for position, pain, temperature and vibration. I am pretty confused and the appointment sucked a lot out of me and I just now feel up to posting about it.

I guess I am curious to know if a co-morbid condition can preclude a diagnosis for ME-CFS? I have zero doubt about the fact that I have ME. I have seldom been so sure of something in my life as I am of this and he even stated I met the criteria. I am stumped as to why he could not offer a diagnosis. By the end of my appointment I was already feeling foggy and tired and wished I had been able to ask that at the time.

I have to admit, I am feeling a bit hopeless now and feel as though I am being turned away. How many other conditions could possibly have all these ME-CFS symptoms and still be something else? I feel like the life boat just told me there is no more room on board and kept on going. I am lost at where I go from here.

 

[Learner1]

I guess I am curious to know if a co-morbid condition can preclude a diagnosis for ME-CFS?

The IOM committee recommends doctors diagnose us with ME/CFS only after conducting a thorough medical history, physical examination, and targeted workup, even if we meet the diagnostic criteria.

They say these steps are needed to rule out other disorders that could cause the patient’s symptoms, as well as to identify any other coexisting conditions.

Imagine how lucky you might be if you didn't have ME/CFS and had something more treatable!! If he finds other conditions and treats all of them, then maybe you don't have ME/CFS. (Or you could be like me and have several other conditions that are treatable but still leave me with ME/CFS...)

It sounds like Dr. Holladay is being thorough and thing to figure out all of what's going on. Did you have any bloodwork or did he recommend any lab work or imaging to identify any other problems?

I know of another patient who has small fiber neuropathy along with ME/CFS. Having a good diagnosis gets you closer to the solution.

 

[RWP (Rest without Peace)]

@Whoops

Sorry for your current situation. I am not sure what to say medically, so I will defer to those with more knowledge. I would encourage you to wait for the outcome of the tests and do as much research as possible ahead of the next visit. I have found that the more prepared I am ahead of an appt., even trying to figure out which options the doctor may choose diagnostically, the more ready I am to react in the moment when it is required.

This next statement fits in the "for what it's worth" category: Since the diagnosis of ME/CFS is still tricky given other co-morbidities, I would try not to focus on the labels as much as we often do. There is so much overlap with these. As @Learner1 just pointed out, a patient could have both conditions.

RWP

 

[Deidra]

@Whoops,

I'm having surgery March 1 to implant a spinal stimulator SPECIFICALLY to treat my bilateral peripheral neuropathy in my feet (constant twitching of my toes, cramps, loss of feeling, pins and needles etc). My doctors said as long as I was in constant pain/distress from neuropathy it would be impossible to expect my CFS symptoms to improve. I don't have diabetes or any other obvious reason for developing the neuropathy (diagnosis is idiopathic peripheral neuropathy) but not once did they suggest my CFS/Fibro diagnosis should be withheld or reconsidered.

That being said, I agree that doctors knowledgeable about CFS/ME want to make sure the established diagnostic criteria is followed each time the diagnosis is given. Far too many patients suffering from this illness must contend with disbelieving medical professionals and are forced to participate in a recovery program that often leaves them suffering more. Refuse this treatment plan and you will surely be labeled as non-compliant which is akin to a death sentence for anyone hoping to be awarded disability!

Anyway, I hope this helped some, as someone who has hoped for years that I'd finally get a diagnosis for something that has a viable treatment, I have learned the hard way not to put off seeking treatment for something I knew wasn't CFS/ME related. Best wishes to you for finding the answers you need about your health issues, hopefully the neuropathy medications or other therapies will help you as I could not tolerate any of the medications.

 

[pattismith]

@Whoops , a lot of diseases gives similar symptoms as ME/CFS, and you were fortunate enough to find a doctor who is ready to do some more investigations.

I say you are lucky, because these diseases often have treatment, whereas ME/CFS doesn't have yet any efficient official one!