[Megan]

I need to share with you about my visit on Tuesday with a General Physician who was highly recommended to me....and what an awesone visit that was!

After perusing my current symptoms and other seemingly miscellaneous symptoms/events that have happened to me since about 1987 he said that even the Plantar Fasciitis which developed in 1991 and has not abated, indicated to him an autoimmune kind of response which has been happening to me. Then there was the Erythema Nodosum in 1992 and it goes on from there!

He said he is a person who likes to do Venn diagrams so he showed me how he thinks things fit in for me. He labelled the top M.C.T.D - (multiple connective tissue disease) - and stated the 'Rheumatological' symptoms that I have been having down one side. Then in the diagram he did circles which overlapped across from right to left with things like RA, SLE, Psoriatic Arthritis, Sjogrens etc. etc. etc. and the last one being CFS/Fibro. He also did some tiny little interlinking circles here and there that indicated much rarer conditions which also overlapped but much more rarely get checked.

He said I want to check this tiny little circle right here for the condition Cryglobulinaemia! My Pulmonologist was already thinking that something was going on with my IgG and I have had repeated episodes of Mycoplasma Pneumoniae so it was interesting he honed in on this which has an IgG component although I don't completely understand the process. I do not have Hep C which usually causes this condition but Myco Pn. also can cause it.

He also stated how rare it is for "people with no Diabetes to get both sensory Peripheral Neuropathy and Gastroparesis along with all the other symptoms", I have now had for 18 months. He said either God has struck you with ten different things and you are the most unlucky woman on the planet or there is a connection!!!!Phew! Exactly what I have been wondering!

At least he validated my recent symptoms and experience and that goes a long way!!!

He suggested that even if my result of the Cryoprecipitate and Cryoglobulins comes back normal (a notoriously difficult test to keep at the correct temperature and do correctly it seems) he said he will possibly speak with my Pulmonologist to start some Plasmaphoresis and maybe some steroid sparing medications such as Imuran, Plaquenil, MTX (methotrexate), or Cyclosporin (if I can read his writing correctly).

This is all premature speculation I realise at this point but the overwhelming relief of being validated after all this time was a huge relief!

Cyclelops or anyone who has any thoughts on this I would appreciate your input!

Megan

[glenntaj]

Cryoglobulins are not that specific as a finding in themselves; it really depends what proteins make them up--different ones have different implications. Some are associated with vasculitic/connective tissue disorders, some with Hepatitis C, some with blood dyscrasias like Waldenstrom's.

See:

http://neuromuscular.wustl.edu/antib...m#cryoglobulin

[cyclelops]

I am not that familiar with cryoglobulinemia, however, I did research it at one point. I am not sure if I was ever tested for it. Somehow I doubt it. These days I forget things, so the specifics of the disease escape me right now.

I think Glenn will agree with me, when I say that most of these autoimmune diseases are related in one aspect or another.

I am on IVIG right now, and at this point, probably will not consider other drugs. I tried Plaquenil and it did nothing but contribute to my misery.

I think with stem cell research being able to develop here in the States, that much progress will be made.

Doctors hear hooves and think horses. They look at the most common diseases. SLE, Sjogren's, RA are more common, then the less common scleroderma, mixed connective tissue disease which by the way have serological markers just the same as the more common ones. By the time they think zebras, quite a while has gone by. (At least in my case). So it is good you have a doc thinking zebras.

Here where I live, treating rheumatological disease requires a blood marker, right or wrong, they want these blood markers.

It sounds like your doctor is thinking!! I agree, either you were cursed with 10 conditions or they all relate. I have had a terrible time getting that across to docs. I don't think it is likely that you have 10 conditions but rather one. Have them check your t cell panel, lol.

I hope they can find and answer for you, and I hope that you find the treatment palatable. Most treatments pose substantial risk. It is scary. Hand on to your hat.

The other thing is that sometimes it takes time for symptoms to show. I hope you get the proper diagnosis, and a medication you can tolerate.

[Augie]

I've had cryoglobulenemia, lost it, gotten it back, and have recently tested clear. It's a funny thing. I did have Hepatitis C, then, 18 months after I was treated and the virus became undetectabale, I had an attack of necrotizing vasculitis, which was pretty bad (2003). The blood tests associated with this illness showed cryoglobulins, which hung around for a couple of years, then disappeared, only to reemerge on tests in 2006. I was concerned, but my doctors just said that they'd keep an eye on it. Six months ago I had another round of tests and the cryos are gone. As you mention, the tests are tricky (the blood haas to be kept at just the right temperature, etc.). Aside from the slight possibility that the tests were mishandled, this yo-yo thing is a mystery. I'm glad I'm clear for now. I have no idea whether this helps you at all!! Good luck.

[Megan]

Thank you Glenn, Augie and Cyclelops for your responses.

No Cryoprecipitates were detected in the test that I had done three weeks ago -which is very good -I guess!

The General Physician who I saw and who originally ordered the Cryoglobulinaemia test was equally as validating when I saw him again last week. He treated me with respect and suggested that in ten years time a lot of this currently unknowable stuff will be much more easily diagnosed as they at present do not have the tools for testing.

He believes that I would benefit from having a course of IVIG which he will suggest to my Professor Pulmonologist.

I felt that this guy really 'got it' immediately. He took on board the complexity of my myriad symptoms and understood that there was a legitimate basis for it all.

It's interesting because since I have had a positive test for Gastroparesis (almost zero gastric emptying for solids) in January this year, I am being treated as being more credible with my other symptoms -whereas before with some of the doctors I'm sure they thought it was all in my imagination, as nothing at all was testing positive.

Cyclelops: What's involved with IVIG? An IV insertion obviously but how long does each infusion take? Is it painful like IM gammaglobulin? What length course is recommended? How do they monitor effect?

Better health to you all!