Symptoms and results. Please help.

[dan062]

A friend of mine, who is also a member here, suggested it might be a form of dysautonomia. I agree to an extent that - that may definitely be causing some of my symptoms, but I still think there's another illness that just has yet to be found.

You're almost definitely correct about this. As a CNS process, I don't think a primary dysutonomia would drive up inflammatory markers in the peripheral blood.

The same could said for MS. If there are inflammatory markers in the blood circulating around your body (the peripheral blood), as opposed to the CSF, this is a pretty good indication that whatever you have going on is systemic rather than confined to the nervous system.

 

[breeisreallyawesome]

I'm definitely bringing all of this to my GP's attention on my Friday appointment. You guys are awesome as far as being helpful and giving me things to think about that I hadn't thought about before, or even my doctors. I will be sure to let you know what the Friday appointment yields. Hoping for more action instead of just repeating the same blood work over and over.

 

[breeisreallyawesome]

How exactly do they go about diagnosis ME? I've just read on the symptoms and it is almost mirror imaged to what I'm going through. Any specific tests that need to be ran? Does it pick up on CT or MRI?

 

[halcyon]

Unfortunately it is a diagnosis largely based on symptoms, and a lot of the symptoms are present in other diseases as well. There aren't any tests that are 100% diagnostic of ME, but there are a large number of tests that are abnormal in ME patients. Some, but not all, will have punctate lesions on an MRI of the brain.

In the US we have the CDC case definition (also called the Fukuda definition) which has its flaws. The Canadian Consensus Criteria is widely recognized as a better criteria but hasn't been widely adopted in mainstream medicine.

 

[halcyon]

Regarding which tests need to be done, I'd point again to the roadmap that I linked you to. That covers most of the known triggering pathogens and environmental exposures that we know about to date. Finding a knowledgeable ME/CFS doctor can be helpful for this process but they can be hard to find depending on where you live.

 

[Gingergrrl]

Bree, I missed it if you said where you lived but if we had a general idea, we could give you ideas for ME/CFS specialists. They could run tests to help rule out other diagnoses as well. Best wishes for your appt on Friday.

 

[breeisreallyawesome]

I live in Western Kentucky. Right by Kentucky lake.

 

[dan062]

Thou from some of your symptoms dysautonomia may be involved, I think you have far more then just that going on.

I definitely think so, too. I wouldn't be comfortable attributing everything to that at the moment with positive ESR, CRP, D-Dimer and episodes of incontinence.

Perhaps more importantly, dysautonomia and CFS/ME are (for the most part) diagnostic dead ends and there is little to gain by being diagnosed with either (and a lot, potentially, to lose).

CFE/ME, at best, might get you a clinician that's comforting trialing you on anti-virals or immunosuppresants (if you are lucky enough to have access to one in your area; they are few and far between).

For dysautonomia, after going to the trouble of finding an autonomic specialist and going through the tilt table testing you will likely be told that your dysautonomia (if it's comfirmed) is secondary to some other condition and advised to drinks lots of water and follow a high sodium diet. Do you need to spend thousands to hear that advice?

I strongly suggest you get refered to a specialist to rule out systemic mastocytosis.

I've thought about this one too, actually. The specialist in question would be an immunologist and the initial test is serum tryptase but a bone marrow biopsy is the gold standard.

Just be aware, however, that the incidence of primary systemic mastocytosis is about 1 in 100,000 per year whereas CFS/ME is 235 / 100,000, if these statistics are still correct. I used to hate getting excited about something that could be a possibility only to dig up the statistics and find that the disease is, as doctors would say, 'vanishingly rare' (and really hard to test for).

Not that it's not a possibility and you mightn't want to be tested for it, but I'd advise following your medical team for a while unless they're still coming up with nothing as they'll probably consider more probable and easy to explore diagnoses first.

 

[breeisreallyawesome]

Thank you all! I have put these in my notes as well as bookmarked this group for my GP to look over tomorrow. I will let you know what course of tests she's decided to run and get back with you on that, as well as results from whatever tests she decides to run (even if the result takes time to get read).

 

[Gingergrrl]

Bree, best wishes for tomorrow's appt. You mentioned Kentucky and I think the closest ME specialists (if it turns out that you decide to see one) would be in North Carolina although I could be wrong about that.

 

[breeisreallyawesome]

They're sending me to Vanderbilt. I've heard it sucks to go there unless you have a surgical case, but with my insurance, I can't pick and choose. It all depends on referrals.

 

[halcyon]

May not be all bad. It looks like they have a dedicated autonomic dysfunction center.

 

[Gingergrrl]

Bree, I think @Sushi is familiar with the autonomic center at Vanderbilt (but I could be wrong about this.) Am tagging her just in case.

 

[Sushi]

They're sending me to Vanderbilt. I've heard it sucks to go there unless you have a surgical case, but with my insurance, I can't pick and choose. It all depends on referrals.

Sorry I haven't read this whole thread. Vanderbilt has a good autonomic department with several specialists and a lot of research going on. Are you being sent to this department?

Sushi

 

[breeisreallyawesome]

They're sending me to the MS clinic/neuro-musclular research center (or something along those lines). They can't get me in until March 3rd.

 

[Kati]

They're sending me to the MS clinic/neuro-musclular research center (or something along those lines). They can't get me in until March 3rd.

Hi @breeisreallyawesome it seems like it's a lomg wait for someone in your condition, but there are things you can do. Ask to be put on a cancellation list. Tell them you will come the same day if need be if they have a spot for you. Ask your dr to request an urgent consultation. Make sure to phone back if your symptoms get worse.

My very best wishes. hopefully you will deal with top notch professionals.

 

[jeff_w]

Hi,

@breeisreallyawesome - I saw many doctors, including highly-regarded specialists. None of them ever diagnosed me with CFS/ME, which is what I had.

If I could do it all over again, I would have gone to a CFS/ME specialist first.

You said you will have to wait until March for your referral appointment at the MS clinic. How about seeing a CFS/ME specialist in the meantime? Some specialists will not take insurance. Could you pay for a specialist out of pocket? Do you have family that could help you with this? Getting competent help early in the course of this illness can save you a lot of money and suffering in the long run.

If you do have CFS/ME, a CFS/ME specialist is by far the highest priority. Even if you don't have CFS/ME, a specialist can rule it out for you to pursue other options.

I would strongly suggest finding an CFS/ME specialist ASAP.

Good luck!