Differential diagnosis: Amyloidosis

[WillowJ]

A relative saw this mentioned in a Dr. Donahue column and mentioned it to me. I don't think it looks like what I have, but I thought I would mention it here in case it seems like an answer for someone else. (Horrid answer, but knowing is better than not knowing).

Also, it's a good thing to list in "rare diseases causing fatigue which may be missed by jumbling all fatigue patients in a CFS basket without actually carefully listening to them or doing thorough tests, which policy could lead to severe consequenses, especially when they discourage running more tests after a CFS 'diagnosis'".

Amyloidosis is a rare disease not easily diagnosed. Does cause fatigue. Can involve any organ or system (including nerves). The body deposits a protein, the buildup of which can cause failure of the organ or system where the protein is building up.

http://www.herald-review.com/mobile/article_301bad4e-76a1-11e0-a535-001cc4c03286.html

http://www.amyloidosis.org/whatisit.asp

 

[Esther12]

Thanks Willow J.

Really, there should be some central flow chart, to guide people with CFS through the various possible causes. Sadly, it seems that helping people find the cause of their ill health is not a priority in CFS.

 

[WillowJ]

a flow chart would be a good idea.

should be something they teach in med school, but since they don't, to provide such info for patients to nag their doctors about whatever things look likeliest, would be an improvement over the current situation

 

[lucy]

After that we arrange a development of an application which accepts input of blood tests results and symptoms and that would be a case of GPs replaced by computers. I believe computers can be taught not to suspect anxiety at every possible reported symptom, or even add a line when relevant: "it must be hard for you to endure so much pain!" in its electronic voice (Allan Rickman's voice would also do well for such an application)

 

[Esther12]

Replacing GPs with computers is my number one fantasy. Imagine being treated in a logarithmic manner according to the best available medical evidence, with no room for emotionally driven prejudices or abuse... I'm getting tingles of joy just thinking about it.

 

[leaves]

agreed
-------------

 

[WillowJ]

also the computers will never say "it's reassuring that ___ is normal"

(no, it's not; it's reassuring when we can figure out what's wrong--finding something normal is Thomas Edison progress: now we know one more thing that is not the answer)

 

[taniaaust1]

After that we arrange a development of an application which accepts input of blood tests results and symptoms and that would be a case of GPs replaced by computers. I believe computers can be taught not to suspect anxiety at every possible reported symptom, or even add a line when relevant: "it must be hard for you to endure so much pain!" in its electronic voice (Allan Rickman's voice would also do well for such an application)

lol

In truth I do think computers would do a better diagnostics job

 

[floydguy]

At this point I'd take a Nurse Practitioner using Google over most PCPs.

 

[taniaaust1]

Systemic Mastocytosis is another very rare illness in which is missed (build up of Mast cells which can be concentrating in any parts within the body... can be extremely hard to diagnose as they sometimes need to biopsy a bone marrow section in which it is in). The systemic variety of this disease may not be showing the mastocytosis skin lesions of a tan or red/brown colour.

Some of the symptoms of systemic mastocytosis include flushing, palpitations, nausea, headache, syncope, dizziness, rhinorrhea (runny nose), abdominal pain, vomiting, diarrhea and crampy or burning abdominal pain in association with the ingestion of hot, cold or spicy foods. (appears like IBS), Gastritis, bone pain and cognitive issues (foggy brain, concentration issues, memory issues). Elevated liver enzymes may also be present (just like what happens to us when we are getting reactivating viruses). A period of lethargy usually follows the attacks.

Those with this condition feel very tired and get reactions to chemicals and other things (so also appears like MCS). They also are alcohol intollerant and hot weather and temperature extremes may trigger off more symptoms.

Anyone esp who is getting a lot of issues with body rashes, hives or body flushing should consider this illness

"Many patients with mastocytosis have a long history of chronic symptoms that are occasionally punctuated by acute exacerbations. In one series of adult patients, the average interval between the onset of symptoms and the correct diagnosis was 10 years."

Systemic mastocytosis can be a life threatening disease.. some die undiagnosed.

 

[Nielk]

Thanks Willow J.

Really, there should be some central flow chart, to guide people with CFS through the various possible causes. Sadly, it seems that helping people find the cause of their ill health is not a priority in CFS.

Esther,

I don't get what you mean. Who says that there is no priority to find the cause of CFS? There are so many clinicians, biologists, medical doctors devoting their career on finding just that.

 

[Stone]

Funny you should mention amyloidosis. The neurologist suspects that it could be contributing to my mysterious pain syndrome. I've had ME/CFS since 1995. Both siblings have it (ME/CFS) and so does my daughter. But over the past couple of years I've developed terrible unrelenting pain in the front of both thighs and corresponding subjective weakness which doesn't appear to be ME/CFS related (as if anyone can actually tell that for sure). My levels for whatever chemical they test to look for amyloid type diseases (cant remember the name of the test off hand and I'm too tired to look it up) are somewhat elevated but doc isn't sure it's clinically significant.

I dunno what normal ranges are FOR if being outside a normal range isn't abnormal, but I digress. The doc has fallen back to his usual crafty and brilliant strategy of having me come back in three months to see if I am STILL sick in spite of NOT being treated by him. So I have another month to go until I get to return to the neurologist who can then confirm that indeed I'm still sick, in pain and he doesn't know why or what the devil to do about it. Film at eleven.

When I go back next month, I bet he will run the test for the third time, and I bet it will be just like it was the last two times and I bet he will have me come back in three months. Any takers?

 

[taniaaust1]

When I go back next month, I bet he will run the test for the third time, and I bet it will be just like it was the last two times and I bet he will have me come back in three months. Any takers?

Hahaha are we making bets on what your doctor will do lol.

It wouldnt surprise me if he does do exactly the same test the third time.. Ive had a doctor doing tests over and over again thou they keep coming out normal.. 3 times over, its ridiculous. (what is even more stupid is when they finally get an abnormal test, they then choose to ignore it anyway or say the test must of gone wrong).

So yeah you probably are right and may get test third time....but then he will probably then just go he cant help you and not want to see you anymore (if he's anything like my doctor). They are willing to do same useless tests over and over.. (and end up then complaining about the amount of tests we've had).. but usually refuse to do the tests we actually want and should be having which would be more likely to be showing up issues..

 

[rlc]

Misdiagnosis chronic fatigue syndrome diagnostic software

Hi regarding doctors and computers it would help if they got over their egos and started using this diagnostic software which does the differential diagnosis for them, it is exactly what Lucy is talking about!!!

http://www.isabelhealthcare.com/home/product_overview/products1

A list of some of the diseases that get misdiagnosed as CFS can be found here

http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm

Information on some of the most common diseases (and therefore a good place to start looking for a correct diagnosis) that get misdiagnosed as CFS, often because laboratories are still using out of date reference ranges for blood tests and people are being misdiagnosed in vast numbers because of this can be found by scrolling down these pages and finding these articles.

The myth of chronic fatigue syndrome by Dr Shirwan A Mirza http://www.bmj.com/content/334/7605/1221/reply and

NICE and CDC miss the boat by Dr Shirwan A Mirza http://www.bmj.com/content/335/7617/446/reply

A Judicious Evaluation of unexplained symptoms by Dr Shirwan A Mirza http://www.bmj.com/content/336/7653/1124.extract/reply

Some more information on disease that get misdiagnosed as CFS can be found here
http://www.hfme.org/misdiagnosis.htm

These misdiagnoses wouldnt happen at nearly the rate that they do if all doctors were using the above software. There are about 14,000 different medical conditions and its impossible for doctors to even remember all the names of them, let alone the symptoms and tests that need doing.

Information on why and how often doctors get it wrong and how this software can help can be found here http://www.nytimes.com/2006/02/22/business/22leonhardt.html

Personally I think this web site could help a lot of people by having the words Warning you may be misdiagnosed on all pages, with links to a page that contains information on at least the most common thirty diseases that get misdiagnosed as CFS, because Im finding, as I imagine are a few other of the older members, that every few weeks Im having to explain to someone how to get tested for a commonly misdiagnosed disease like Celiac, but if a section was set up with the information on diseases that get misdiagnosed, the information would always be in one place and it could say something like e.g. make sure you get tested for Celiac, how to get tested is found by clicking this link http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm

It wouldnt be hard to do this for a large number of diseases because just by typing the name of any of the diseases mentioned in the above articles into Google and doing a search will soon come up with a link to information on any disease from a very reputable source which explains its symptoms and how to test for it, e.g. Systemic Mastocytosis http://emedicine.medscape.com/article/203948-overview Sjgren's Syndrome http://www.emedicinehealth.com/sjogren_syndrome/article_em.htm these articles tell you how common a disease is e.g 1 in 100 for Celiac, Systemic mastocytosis 1 in 150,000 so they could be arranged in order from most common to least, to give people an idea of where to start looking.

Then everything would be in one easy to find place for everyone to see and we could get on with making derogatory comments about are doctors without having to take the time to try and explain different diseases to people.

All the best

 

[shannah]

"Sometimes the diagnosis is made only through taking a biopsy of an involved organ and submitting it for microscopic inspection."

from the first link posted above
http://www.herald-review.com/mobile/article_301bad4e-76a1-11e0-a535-001cc4c03286.html

After being treated for a couple of years for Lyme Disease with little response, the ID Doctor sent me for biopsies for a number of things including amyloidosis. He felt it to be a strong possibility as he was very familiar with Amyloidosis since his mother had battled it. Turned up negative on the biopsies.

 

[Ocean]

What type of doctor would test for this?