Hi everyone

Yesterday went in to get blood test results.
Found out that my total protein was too high. It was 186mg
The range it should be is:0-150.

-
Also, my ACE cumulative angiotensin converting enzyme was 59 U/L
Should be less than 51.

It states this mild elevation suggests possible Sarcoidosis. If present it would be likely to be relatively inactive or extrathoracic.

What l find really puzzling is my best friend has just been diagnosed with this disease as well. I even said to her a few weeks ago when l developed symptoms of PN, wouldn't it be funny if l had the same as you? It turns out that l may well have.

So l suppose this would suggest this is where my PN is stemming from.
I feel kind of relieved to have found the underlying cause of PN, and therefore a, able to treat .

The question l have is if l treat Sarcoidosis, will it mean my PN symptoms will go away, or are my nerves already damaged?

Often sarcoidosis goes away on its own, l just hope the PN symptoms follow suit.

Not happy l may have Sarcoidosis, but am very, very relieved that l may get to the bottom of this and it's not idiopathic. That the actual cause can be found is a reliefs or me.

I just wonder if there are any kind of supplements that l can take to make the healing of sarcoidosis quicker?

Cheers sue

Although ACE is used to help diagnose 'possible' sarcoidosis, an elevated ACE is also found with several other conditions:


Quote from http://www.nlm.nih.gov/medlineplus/e...cle/003567.htm

"Increased ACE levels may be a sign of sarcoidosis. ACE levels will rise or fall as sarcoidosis becomes worse or improves.

However, increased ACE levels may also be seen in several other disorders, including:

Active histoplasmosis
Alcoholic hepatitis
Asbestosis
Asthma
Berylliosis
Diabetes
Emphysema
Gaucher's disease
Hodgkin's disease
Hyperthyroidism
Idiopathic pulmonary fibrosis
Leprosy
Lung cancer
Multiple sclerosis
Nephrotic syndrome
Silicosis
Tuberculosis"

I don't remember (but certainly could have missed some of your posts) you mentioning any cough or other lung problems or any rashes or other symptoms of sarcoidosis. Your PN could be from sarcoidosis, but I would think you'd have other more prominent signs.

It is always best to go over your results with the doctor before speculating what the results might indicate...regardless of standard notes from the lab.

The meaning of total protein:

http://www.webmd.com/a-to-z-guides/total-serum-protein

This is elevations perhaps in albumin/globulin.
http://www.webmd.com/a-to-z-guides/t...protein?page=2

Elevated globulins may be due to a bone marrow disorder,
the beginnings of multiple myeloma. In the early days, just the proteins are up, and eventually some patients progress with age
to the myeloma stage. (this is a form of cancer).

If you do not drink enough water during the fasting period before the blood work, there may be elevations in some results.

So you probably will need further testing to see if you have any of the macroglobulinemias.

In the meantime take this as a hint to stay very hydrated, and keep your blood from thickening up. Thickened blood in the periphery can lead to blood clots, and slow circulation.

You will need further evaluation. Perhaps a retest to see if this
result is a lab malfunction etc. If you do make sure you drink lots of water during the fasting period.

The ACE is not really much out of range, and maybe due to dehydration too. I would worry more about the total protein.
But people with sarcoid are supposed not to take Vitamin D. This is not cast in stone yet, but one THEORY --the Marshall Protocol-- which is very controversial still and not accepted, claims that Vit D makes sarcoid worse. (many doctors do not accept this theory, however.)

Did you have ANA run? What other tests did you have?

Also there is no treatment for macroglobuliemia in the early stages.
It is just monitored because not all of them progress to myeloma.
This is one form of macroglobulinemia:
http://www.cancer.gov/cancertopics/f...Sites-Types/WM
It is not common.

More commonly:
http://en.wikipedia.org/wiki/Monoclo...d_significance

Sarcoidosis.

http://www.mayoclinic.com/health/sarcoidosis/DS00251

It appears there are a number of places in the body where it can be. I knew a lady who had it in her lungs and I just assumed that that was where it is.

You have probably read all about it.

...and I'm a little confused/puzzled.
Idiopathic : arising spontaneously or from an obscure or unknown cause
http://www.merriam-webster.com/medlineplus/idiopathic

The cause of sarcoidosis is unknown. [i.e. idiopathic]
http://en.wikipedia.org/wiki/Sarcoidosis

Doc

mrsD- l really hope you are wrong about this one.
If l start researching this, l think l will completely go mad.

You seem to think that this sounds like l have this. Isn't there other kinds of possible causes of this kind of results?

This bone marrow thing is not what l want to have at all.

I hope it isn't that.

I have had kind of a rash on my legs. More like red spot in the middle with white surrounds. It has gone now. I seemed to develop this rash when my burning feet and hands started. I have't noticed any shortness of breath. But last night l did cough a bit, and felt a bit weepy. But when go for a run, l don't have any shortness of breath at all. Actually if anything l have more breath.

So l don't know what to think of this.

Sarcoidosis l can deal with but not the bone marrow thing.
No Way.

Sue

I am reading some of these answers and i am getting a little bit worried some of you may be over confident in your diagnoses. High levels of protein in urine is long way away from cancers or other big nasties I see listed above, as some of you suggest. *edit*

The kidneys' primary function is to maintain the fluid balance in the body and to excrete unwanted soluble chemicals. Although healthy people do pass small amounts of protein in the urine normally, above a certain level suggests that there may be damage to the filter mechanism or inflammation. A second source of protein in urine is blood that may come from any part of the kidney or urinary pathway.

But that alone is not enough to say you have either this or that. Don't listen to so so call experts in chat rooms talk to your physician, dare I say pathology personnel may have more qualifications.

It is important to gain information from reputable sources, especially if your are dealing nervous system issues, which can not only effect your senses but your general outlook on your future health and life in general.

All the best!

Rob Answer

Have you mentioned this rash before? I don't recall. Lyme Disease can cause PN, but it usually takes a while, and your rash description doesn't sound exactly the same. Makes me wonder about other exposures in your part of the world that we might not know/think about in this part of the world... ...but I would think neurologists there would know what local flora & fauna to consider/eliminate.

Doc

Please read my post carefully...

What I did say was some tests show out of range if you are dehydrated when they are done, during the fast.

Have the tests done again, and stay hydrated as best you can
and see what the results are. Also labs do make mistakes and retesting is common for that reason.

BUN is blood urea nitrogen, and is a separate test from Total Protein.
http://labtestsonline.org/understand...FZDrKgodx3Iz0w
This may be elevated because of kidney issue or dehydration.Some drugs cause elevations too.

Total protein(blood):
http://www.nlm.nih.gov/medlineplus/e...cle/003483.htm

I don't see a URINE test listed on this thread with results?
Proteins excreted in the urine often lead to LOW blood test results,
not higher or out of range high.

If you don't want to learn about these things, because the answers confuse or upset you, then you should not really ask the questions. The collective knowledge and experience here from all our posters is very large. You can take it or leave it as you desire.

If you believe you have sarcoidosis based on this one test, keep in mind it is not always mild in everyone. It can be devastating to some.
But you will need further testing to show if you really do have it.

one of the reasons i had cat scans of the chest for 3 years in a row and now every other year is because i have numerous lung nodules. they are keeping an eye on them to see if they grow or more develop. they are also keeping an eye out for sarcoidosis being that i have the nodules. the group i am in has 10x the rate of sarcoidosis as would be expected from the same age groups in the general population.
im surprised they could diagnose you so quickly with sarcoidosis. for most of the people i worked with it took a while. have you had a lung biopsy?
because a person has sarcoidosis in one organ such as lungs, eyes, etc doesnt mean that the other organs are affected. so if you have it in your lungs doesnt mean that it is causing damage in your nerves.