Understanding Our Diagnoses And Their Differences

[roxie]

It seems like a lot of us post what we are diagnosed with and we are sometimes confused exactly what it is & means compared to other things we hear. I know I'm confused.

Does anyone know all the differences or are the just different names for the same thing?

Like what's the difference between POTS and OI? NMH and NCS? Things like that.  

I don't know how the differ even though I know the acronyms and names 

POTS-

OI-

NCS-

NMH-

IST-

SVT-

PVC-

PAF-

Add whatever y'all would like

[sue1234]

All I know is OI just means plain ol' orthostatic intolerance, which just means you have trouble being upright. It's not really a "name" of an issue, but more a term used for the problem. To me, the other terms describe the character of why someone has OI (heart racing, blood pressure dropping, etc.). Did that make any sense?!

[heissovereign]

In the same boat, thanks for posting... will love to see what all of this means.

[Chaos]

From my understanding OI is a general term meaning you have difficulty being upright. POTS and NCS/NMH are all terms that would fall under the general umbrella of "OI" but are more specific as to what types of symptoms you experience when upright. From what I've been able to find in researching it, NCS and NMH are used interchangeably although I suppose if you have fainting you might be more likely to be labeled NCS vs if you just have BP drops without fainting you might be called NMH. However, I think it is truly more just a matter of what your doctor has chosen to use or was trained to use. For example, I have BP drops without fainting but was still diagnosed as NCS or Neuro Cardiogenic (Near) Syncope by a cardio at a big autonomic center. But the neuro I saw at another big center used the term NMH as I don't actually faint.

IST/ SVT/ PVC are all types of "abnormalities" in heart beat rythyms. I'll let some of the nurses on here go into the technical differences. All I know for sure is that SVT can be a more serious issue while PVCs are not life threatening or dangerous and are in fact fairly common.

PAF- If you check the DINET web page they have a good description of this. It's a much more serious form of dysautonomia and can be life threatening...unlike POTS etc.

[misstraci]

POTS- postural orthostatic tachycarfdia

OI- orthostatic intolerance

NCS- neurocardigenic syncope

NMH- neurally mediated hypotension

IST- inappropriate sinus tachycardia

SVT- supraventrical tachycardia

PVC-premature ventricle contractions

PAF- pure autonomic failure

I only know what they stand for but not what each means!!!

[brethor9]

I found this exerpt from one of Dr Julian Stewart's articles explaining chronic OI and POTS;

Orthostatic intolerance is common but often misunderstood. Investigation of the condition is an evolving field of integrative physiologic study. Acute orthostatic intolerance is characterized by simple faint. Despite its ubiquity, scientists do not yet understand why particular people faint. Chronic orthostatic intolerance, characterized by postural tachycardia syndrome (POTS), has been demonstrated in adolescents and some adults. POTS, however, remains a heterogeneous entity, likely of varied etiologies. Until better understanding is achieved, treatment remains more guesswork than science. So I think Dysautonomia is the umbrella, followed by categories like OI and subcategories such as POTS, MCAD, etc....just my opinion

for my diagnosis I am termed severe Orthostatic Intolerance accompanied by mild POTS and moderate autonomic dysfunction; clear as mud

Bren

[peregrine]

Let me answer the ones I can think of:

POTS- postural orthostatic tachycardia syndrome: your heart beats too fast when you stand up, and you have other symptoms too (often lightheadedness, fatigue, nausea, etc). Just having tachycardia when you stand, with no other symptoms, isn't really POTS per se (although some people disagree about this) - the idea is that you have that and other symptoms too, which is why it's called a syndrome. As far as I know there's nothing fundamentally wrong with having a posturally mediated tachycardia if nothing else (the fatigue etc) is happening.

NCS- neurocardigenic syncope: also called vasovagal syncope, the commonest cause of syncope in the general population. In terms of its effects it can be similar to POTS (in terms of daily problems between episodes of passing out), but it doesn't have the tachycardia (fast heart beat). It can be caused by "insults" like seeing blood, getting poked with a needle, etc, or it can happen as a mechanism for passing out (syncope) in people with POTS... people disagree about these a lot (how much POTS and NCS do or don't overlap). As far as I can tell the only thing people don't disagree on is that POTS involves tachycardia!

NMH- neurally mediated hypotension: low blood pressure caused by issues with the nervous system (rather than, e.g., dehydration or low blood volume)

IST- inappropriate sinus tachycardia: your heart beats too fast caused either by a faulty sinoatrial node (one of the biological pacemakers in your heart) or is part of dysautonomia; it's a subtype of SVT and is pretty uncommon unless part of dysautonomia

SVT- supraventrical tachycardia: a general class of tachycardias (rapid heartbeats) caused by the part of the heart above the ventricles (sinus node, atria, atriaventicular node); distinguished from ventricular tachycardias, which are life-threatening in most cases

PVC-premature ventricle contractions: a particularly weird type of heartbeat (although single events of these are pretty common, most people will show them from time to time) where your heartbeat starts in the ventricles (the bottom part of the heart) rather than in the sinoatrial node

PAF- pure autonomic failure: orthostatic hypotension (low blood pressure when standing), especially in older folks, resulting from the sympathetic nervous system failing to successfully regulate the heart and blood vessels

MSA - multiple system atrophy (or Shy-Drager, again, classification is Hard apparently): progressive degenerative neurological disease, includes degredation of the autonomic nervous system and thus shares many symptoms with things like PAF, POTS, NCS, NMH, etc but unfortunately is lethal after some period of time.

[peregrine]

Oh, also, if folks haven't seen the NDRF (National Dysautonomia Research Foundation) Handbook, you can find it here:

http://www.ndrf.org/NDRFHandbook.htm

It's packed with a super-awesome glossary, great descriptions of tests and treatments for dysautonomia, etc. It mostly looks at POTS, NCS, PAF, OI, OH, and MSA, and doesn't cover mast cell stuff at all. Plus it's free, always a plus. I've found it to be a great read.

[ramakentesh]

POTS can be caused by:

Low flow state - increased angiotensin II - increased MSNA

Low flow state - hypovolumia of different etiologies

Low flow state - norepinephrine transporter deficiency - genetic or perhaps acquired?

Normal flow state - increased endothelial nitric oxide or other vasodilators

Normal flow state - neuropathy to splanchnic circulation

Normal flow state - parasympathetic withdrawal or perhaps even vagal withdrawal?

High flow state - increased peripheral blood flow, pooling and autoimmune neuropathy?

NCS can be:

Decreased NE release and decreased orthostatic MSNA activity

Normal NE and increased expression of NET, too much uptake.

[peregrine]

Would you be willing to define low/normal/high flow and what they refer to specifically? I've seen the terms around but can never quite figure out what's meant :^)

[ramakentesh]

Term used by Stewart and Medows to define POTs into groups based originally on calf muscle blood flow. Its just a theoretical framework and isnt set in stone.

[L4UR3N]

There is also a link between IST and Hyperadrenergic POTS, with some doctors theorizing that it is the same disorder. Both have hypertension and tachycardia, but there are some differences. With POTS the tachycardia occurs when standing, and with IST it occurs inappropriately (out of proportion) to what you are doing. There is some definite overlap between the two, and the lines are easily blurred. For example, I was diagnosed with hyperadrenergic POTS because my heart rate and BP dramatically increase when I stand up-- but my tachycardia is also definitely out of proportion to what I am doing when I climb the stairs or try to walk fast. My sister on the other hand was diagnosed with IST. Her heart rate does not increase with just standing up, but is way out of proportion to any type of activity at all.

Typically if your resting heart rate is above 100 they will say you have IST, and if it is below 100 they will call it Hyperadrenergic POTS. From my own family standpoint I believe they are related disorders, though not necessarily the same one.

[martiz]

Maybe this should go in a different thread.

I have been diagnosed with POTS. But I have also been diagnosed with ME/CFIDS. Researching on this and another forum, I think I also have MACD.

I think I also have NMH. I don't think I have NCS, PAF, EDS, Shy Dager Syndrome. Not sure about IST or SVT as I haven't had a workup by a cardiologist.

So, my question is this

can someone have ME/CFIDS as well as POTS, NMH and MACD - the symptom lists create so much overlap that I find it hard to believe that they are not the same illness.

The reason why I think it is a big deal is because there are various treatments that can increase functionality and quality of life. For Example:

ME/CFIDS - antivirals, anti-inflammatory meds, high vitamin C, magnesium, LDN

POTS - lifestyle changes, increased salt and water, various meds

NMH - increased salt and water

MACD - H1 & H2 histamine blockers, omeprozole, inhalers

Any thoughts?

[ramakentesh]

I personally think that CFS and there is growing evidence to support this statement -relates to chronic innate immune system activation and blood flow irregularities that might be different or similar to POTS/NMH. In any case, patients with POTS and patients with POTS and CFS had identical symptoms, tests results and characteristics according to a recent study.

[martiz]

Question Do POTS patients have post exertional malaise or reactivated viruses?

Here is the most recent (not yet adopted) criteria for ME/CFIDS Oct 2011:

International Consensus Criteria for Myalgic Encephalomyelitis

A. Postexertional neuroimmune exhaustion (PENE)

[Compulsory]

1. Marked, rapid physical and/or cognitive fatigability in response to exertion
   
2. Postexertional symptom exacerbation
   
3. Postexertional exhaustion -immediate or delayed by hours or days
   
4. Recovery period is prolonged
   
5. Low threshold of physical and mental fatigability (lack of stamina)
   

results in a substantial reduction in pre-illness activity level

B. Neurological impairments

[1 symptom from 3 categories]

1. Neurocognitive impairments
   
2. Pain
   
3. Sleep disturbance
   
4. Neurosensory, perceptual and motor disturbances
   

C. Immune, gastro-intestinal and genitourinary Impairments

[1 symptom from 3 categories]

1. Flu-like symptoms -recurrent or chronic, activate or worsen with exertion
   
2. Susceptibility to viral infections with prolonged recovery periods
   
3. Gastro-intestinal tract
   
4. Genitourinary
   
5. Sensitivities to food, medications, odours or chemicals
   

D. Energy production/transportation impairments

[At least 1 symptom]

1. Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations
   
2. Respiratory
   
3. Loss of thermostatic stability
   
4. Intolerance of extremes of temperature
   

Journal of Internal Medicine, Volume 270, Issue 4, pages 327–338, Oct 2011

In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

[peregrine]

My half-sister has CFS, but in her case for the fourth category (D) she only fits criteria 3 and 4 - she has temperature intolerance due to constantly running a decent fever, but denies anything along the autonomic spectrum of stuff. The overlap seems interesting to me; when I was first diagnosed I repeatedly poked her saying "Are you sure you've never felt X symptom?"

[Chaos]

Martiz- these look more like the Canadian criteria for diagnosis rather than the CDC's. I've not felt like I fit criteria for CFS based on the CDC criteria but looking at this list I'd fit criteria. Glad to see they are putting this out in this format. Thanks for sharing.

[martiz]

@ Peregrine: If you notice, you only have to have one of category D (at least one symptom)

the only category that is absolutely necessary is the first one - Post Exertional Malaise which they are trying to have renamed as PENE - Postexertional neuroimmune exhaustion (PENE pen′-e)

D. Energy production/transportation impairments

[At least 1 symptom]

• Cardiovascular - Orthostatic Intolerance, Neurally Mediated Hypotension, Postural Orthostatic Tachycardia Syndrome, Palpitations
  
• Respiratory
  
• Loss of thermostatic stability
  
• Intolerance of extremes of temperature
  

[martiz]

Martiz- these look more like the Canadian criteria for diagnosis rather than the CDC's. I've not felt like I fit criteria for CFS based on the CDC criteria but looking at this list I'd fit criteria. Glad to see they are putting this out in this format. Thanks for sharing.

Hi Chaos,

see below: my words in italics

"The problem with broadly inclusive criteria [15, 16] is that they do not select homogeneous sets of patients. The Centers for Disease Control prevalence estimates increased tenfold from 0.24% using the Fukuda criteria [17] to 2.54% using the Reeves empirical criteria [16]. Jason et al. [18] suggest that there are flaws in Reeves’ methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate patients with ME/CFS from those with major depressive disorder. Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds [19].

Some symptoms of the Fukuda criteria overlap with depression, whereas the Canadian Consensus Criteria [20] differentiate patients with ME from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21].

International Consensus Criteria

The Canadian Consensus Criteria were used as a starting point, but significant changes were made. The 6-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months. Notwithstanding periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact."

Again, this criteria aligns with WHO diagnosis criteria for ME and has not been accepted by CDC (yet). Here is the list of physicians and researchers who created this criteria. I think this is the most accurate criteria created thus far:

"Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer-reviewed publications, diagnosed or treated approximately 50 000 patients with ME, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi-type process."

As you can see, some heavy hitters in this list of participating experts.

1. B. M. Carruthers¹,
   
2. M. I. van de Sande²,
   
3. K. L. De Meirleir³,
   
4. N. G. Klimas⁴,
   
5. G. Broderick⁵,
   
6. T. Mitchell⁶,
   
7. D. Staines^7,8,
   
8. A. C. P. Powles⁹,
   
9. N. Speight¹⁰,
   
10. R. Vallings¹¹,
    
11. L. Bateman^12,13,
    
12. B. Baumgarten-Austrheim¹⁴,
    
13. D. S. Bell¹⁵,
    
14. N. Carlo-Stella¹⁶,
    
15. J. Chia^17,18,
    
16. A. Darragh¹⁹,
    
17. D. Jo²⁰,
    
18. D. Lewis²¹,
    
19. A. R. Light²²,
    
20. S. Marshall-Gradisbik⁸,
    
21. I. Mena²³,
    
22. J. A. Mikovits²⁴,
    
23. K. Miwa²⁵,
    
24. M. Murovska²⁶,
    
25. M. L. Pall²⁷,
    
26. S. Stevens²⁸
    

[martiz]

Oops, I didn't mean to hijack this thread. Sorry.

[peregrine]

martiz: Oh, totally. I'm not saying she *doesn't* have CFS - quite the opposite! But I find it interesting that she appears to have ~no symptom overlap with me whatsoever despite many folks on this board having overlaps between the two.

[Chaos]

Sorry Bananas for hijacking the thread as well.

Martiz- Thanks for providing such concise format for the diagnostic criteria. I appreciate it. Haven't really researched CFS much so not familiar with the people on the list but I accept your word on it. Hopefully CDC will accept it soon. I think most docs around here still think it's all an imaginary disease so I haven't wanted to get labeled with it.

[McBlonde]

Well, wow.... I have not seen CFS categorized like that... I'm almost 100% of that list. I always thought CFS was associated with post viral, which I never had.. Interesting.... So, under that criteria, POTS is under the CFS umbrella?

[martiz]

@ Chaos - YES! Do not get labelled with ME/CFS is you can help it. Once that is in your chart, you will get little to no help at all. I am getting more help by focusing on my POTS then I have ever gotten for ME/CFIDS. As far as the people on this list, some of them - Klimas, Bell, DeMierlier, Pall, Stevens, Carruthers, Chia - these are the Grubbs of the ME world. There are a few notable names missing which I don't know why - schedules, politics, who knows.

Hi McBlonde,

No, I would not say that POTS is under the ME/CFIDS umbrella. It is under it's own umbrella of dysautonomia - which is part neurological and part cardiovascular.

The syndrome of ME manifests as a set of symptoms - one of those being dysautonomia. Same as category C - gastrointestinal symptoms. This does not mean IBS should be categorized as ME but rather ME includes symptoms of the gastrointestinal umbrella - IBS, poor motility, nausua, abdominal pain, bloating.

There can be different triggers for ME/CFIDS - not just viral. Could be trauma, I forget the others. But dysautonomia can also be post-viral, which I believe to be true in my case.

Now, you can see why I think there is too much overlap to not be the same illness. MCAD has a very similar list as well.

[Chaos]

@ Chaos - YES! Do not get labelled with ME/CFS is you can help it. Once that is in your chart, you will get little to no help at all. I am getting more help by focusing on my POTS then I have ever gotten for ME/CFIDS.

Yes, sad to say but it's true. I see how patients where I work get treated with these types of diagnoses on their charts. That's why I never wanted it on mine. At least with POTS, most docs don't know anything about it so they take your word for it and treat you with respect- especially when you say you were diagnosed by CC and Mayo. Unfortunately, now I've found that when I see most local docs, they blow me off because they DON'T know anything about POTS etc. LOL Can't win for losing..as the old saying goes.