Dr's ME suggestion - what are your thoughts?

[evo123]

I have, this morning, been to see my GP to update her on my condition since being weaned off Fludrocortisone (my dizzyness is not as bad..yay).  She asked me if when I was in hospital did anyone assess me for ME - they didn't.  She wants me to keep a diary and present it to my neurologist in November.  

So...when I came home I googled it and learnt that many of it's symptoms are similar to mine...similiar to POTS.  I found this page:

http://www.hfme.org/themesymptomlist.htm

To all who know my history..what are your thoughts on this?  Are there any specific tests that can be done for this?  If not how would I know if I did have POTS or ME if the symptoms can be similiar?

This new information has puzzled me!!!!

[halbashes]

I just wanted to quickly point out that MedHelp also has a Chronic Fatigue Syndrome and Fibromyalgia Community that may be able to offer you further insight on Myalgic Encephalomyelitis.

Fibromyalgia/CFS Community:
http://www.medhelp.org/forums/Fibromyalgia---CFS/show/44

[Heiferly]

Yes, it's a different test but they can do it on the same batch of urine.  You'd have to look in your records or ask someone reliable to double-check if they did urine histamine check--and this is the clincher--ON A DAY when you were showing symptoms.  That is, I've heard from people with CONFIRMED masto that they have had negative 24 hour urine histamine tests on days when they weren't especially symptomatic.  So you need to figure out which of your symptoms are most maso-esque and pick a day when those symptoms are prevalent and do the test on that day, as I understand it.  Because people with masto aren't having attacks every day necessarily, and the test only looks for it being flared up.  Also, you should not have been on a H1 or H2 antihistamine at the time of the test--H1s are allergy medicines like Claritin or Benadryl and some nausea meds like phenergan while H2s are stomach acid meds like Zantac (Ranitidine) and Pepcid (Famotidine).  Many of us take one or more antihistamine and may not even realize it because people often only associate allergy medicine with that word, not all the stomach meds.

[evo123]

Whilst in hospital when they found the adrenal tumour I had a 24hr urine test for Pheochromocytoma and the results were within normal levels.  I asked about MCAD but was told this would show up in the urine test....but from what I have read a different urine test is needed....right?

Today I am having hypoglycemic episodes too!!!!!!.....this is never ending, it's like I go in roundabouts!!!!!

Hope you are starting to improve, we miss you and halbashes here xx

[Heiferly]

Did they ever do the 24 hour urine catecholamine panel and 24 hour urine histamine tests on you; I can't recall?  It might be good to get those done (for pheo and masto, respectively, I believe).

[Weney3777]

Did you speak with the cardiologist? A jumping HR can take a toll on a person. I know I feel awful when the tachy comes on. I can't believe they sent you home like that. How are you feeling now? Has everything leveled out?

[evo123]

At the moment I would love a confirmed dx.  It would move me forward in the respect I know exactly what I am dealing with.  I hope you are responding well to the treatments you are on.

Tonight I have spent several hours in A&E.  My heart rate is jumping everywhere.  This has no connection to my position or standing.  I have been in a hospital bed and it has been jumping from 80 to 130 for no reason. My bp spiked to 204/154.  I have been sent home and told to ring the cardiologist in the morning who discharged me a month or so ago!!!  

[Weney3777]

I feel for you. I have some of your symptoms(though few), and am being treated with fludro, beta-blockers, and midodrine. There are no autonomic specialists in the Western USA. So I'm kinda stuck with just treating the symptoms.

I thought that was odd that you had low B12, then crashed after the injection. With so many symptoms, they must be hard to pinpoint and treat. Sometimes it seems it never ends. Keep on top of everything, though, and hopefully the ME test is negative. But , then, if you are feeling those symptoms, wouldn't it be nice to find something that can be treated to help you feel a bit better?

I wish you the best.

[evo123]

A brief history of my illness:

I have 3 children aged 1, 2 and 7 years.  Looking back I have not been 100% well since the birth of my first child in 2002.  During my last pregnancy I was unwell with and had tachycardia and sweating, once I gave birth by c-section, I had a 'funny' turn and have had several of these since.  The 1st may this year I 'crashed' and have not yet recovered.  I was in hospital for 7 weeks and did not recieve a confirmed dx.  My symptoms were severe and included: tachycardia, sweating of extremeties, nausea, near faint, chest pain, palpitations, severe orhostatic intolerence, weakness, visual disturbances, sensory overload, hypoglycemia, low B12, low folic acid, low iron stores, low Vitamin D, headaches, adrenaline like rushes, internal shakiness.  There are more but the above were the main ones.  I was found to have coeliac disease, an adrenal tumour and tested positive on a tilt table test for POTS.  I have inverted T waves, mild mitral and triscupid valve regurgitation, tested positive for antiphospholipid syndrome and had a low result for ceruplasmin (which has not been followed up and can indicate wilson disease).  My adrenal growth has been looked at for functioning but in the urine test done this does not seem to be doing so.  I am having it monitored for growth.  Before I crashed I had recently recieved a Hep B vaccine and a B12 injection.

At the moment I only have a 'suspected' POTS diagnosis although I was being treated for this with betablockers and fludrocortisone.  I have been trying to be refered to a specialist autonomic unit in London, UK but at the moment I am not able to do so.  I see my neurologist again in November and will go from there.

[evo123]

http://www.hfme.org/whatisme.htm

‘There is ample evidence that M.E. is primarily a neurological illness, although non-neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised’.

'Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction, and in particular, inconsistent CNS dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

Myalgic Encephalomyelitis represents an acute change in the balance of neuropeptide messengers, and due to this, a resulting loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions (cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance etc). It is a loss of normal internal homeostasis.'

http://www.hfme.org/methemedicalfacts.htm  

From what I understand ME is predominately caused by infections - many people with this illness can recall an infection triggering symptoms although some have a more gradual onset and a trigger can not be found..  I read that this damages the spinal cord and Central nervous system.  Though i'm not sure if this is a majority finding or a specific finding to the disease.  I have also read that lesions can be found in the brain of people with ME similar to those found in MS sufferers - I may be incorrect about his though and am trying to find the site I read it!!

The below link covers some of the causes:

http://www.supportme.co.uk/causes.htm

For a diagnosis to be made symptoms have to be present for at least 6 months and other ilness' has to be ruled out.  I have not read anywhere that brain damage has to be present for a diagnosis to be made.  

[evo123]

Here is a link telling what ME is:

http://www.hfme.org/whatisme.htm

Heiferley has informed me that in the US this is more commonly known as CFS.

[evo123]

Thank you for the links.  I will get back to you after doing some reasearch.  I was unaware that one could have ME and POTS and am now wondering does one cause another?  I suppose I will understand when I've done the reading.

I hope you start to pick up soon x but take care and rest xxx Thanks

[Weney3777]

I looked over the ME site, and from what I've read, it seems that one needs to have brain damage to have that diagnosis(if I'm correct). What happened to you, if you don't mind me asking?

[acesew]

What is ME?

[Heiferly]

Many patients with ME test positive for POTS; they're certainly not mutually exclusive.  So whether or not you had ME would not negate a diagnosis of POTS or "replace" the POTS diagnosis.  I'm a bit under the weather right now and not up to researching at the moment, but there are plenty of sources out there on patients with ME and POTS.  If you want to search yourself, it may be very helpful to know that in the United States ME is still much more frequently referred to as CFS (chronic fatigue syndrome) so you'll need to search for both terms separately to get maximal results:

http://chronicfatigue.about.com/od/cfsglossary/g/MECFS.htm

Sorry I don't have the energy to pick through on my own, but this may get you started:

http://scholar.google.com/scholar?q=POTS+CFS&hl=en&btnG=Search

http://scholar.google.com/scholar?hl=en&q=chronic+fatigue+syndrome+dysautonomia&btnG=Search

http://www.ncbi.nlm.nih.gov/pubmed/18805903?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://cfids-cab.org/cfs-inform/Coicfs/hoad.etal08.pdf  (sorry it's a pdf, but it's worth the download.  Title:Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome.)

http://journals.lww.com/pedresearch/Fulltext/2000/08000/Autonomic_Nervous_System_Dysfunction_in.16.aspx

If you want more help looking into this, let me know again in a few days and hopefully I'll be feeling better and can look into it more comprehensively for you.  Sorry I can't do better now.

Take care!  H.