Hi all I am very dismayed at present
 

My Name is Nubiene I found this site through surfing for information on the diagnoseses ive been given.
it has thrown me into a fixated doom shock angry state the ones I will mention now was discovered in 2009 via blood test and 2010 and I was not told until the 12th of July where I had another set of blood tests done by a Locum Doctor who steped in to take the clinic at the last moment.
He examined me and told me that HE believed I may have CFS OR CFS/ME OR MAYELOMA with the latter he wuold have to do some blood tests.
I recieved a phone call six days later stating that abnormal protein was found in my blood. He said he could not tell me more over the phone . I asked him could this protein cause pain in my body he said yes. When I recieved a report four days later it stated monocolonal gamapathy igG with Kappa Light chains and intermittent neutropaenia. and that these tests had as I SAID SHOWN UP IN BLOODS IN 2009 AND 2010 and was never discussed I was also diagnosed with chronic fybromyalga syndrome (CFS) which was told to me in the past 27yrs was neuropathic pain without any tests done. I have been told I HAVE BEEN REFFERED TO A HAEMOTOLOGIST and I WAIT WITH NERVOUSNESS dont know whats happening. BEEN TRING TO UNDERSTAND THE gi or ig/ levels 2.9 and neutropeania which is 1.0

Hi, I'm glad you came here.
 

You're having a really tough time, nubiene, & it may not resolve itself very quickly. Here's a link to the fibromyalgia forum:

http://neurotalk.psychcentral.com/fo...aysprune=&f=12

Stop by, ask questions, get to know the folks. You may not find anyone in your exact situation, but you'll come close.

I was diagnosed with chronic fatigue syndrome back in the 1980s, but that was in California where luckily I was living then. In most of the rest of the US, I would probably have gone undiagnosed. I'm having similar problems again, but after 8 yrs no answers. Fibromyalgia is mentioned, but it's still in the category that CFS was for lots of medicos. Some aren't convinced it's really organic, or at least that's my experience.

Take a deep breath when it gets bad. Keep coming back. Keep asking questions.

Prayers. :hug:

Oh how we understand your frustrations. I would be angry too. It's understandable that you're very upset, and you should be.

You do have some problems, worse problems now. You should have been informed of those results. It would have been to your advantage, I'm sure.

Be that as it is, you must collect yourself and give it your best here. You need all your strength.

There's lots of info here to do some research to find answers.

I pray you'll get the attention you need and deserve.

Welcome aboard!!
 

nubiene,

Happy to see you have come to be with us. As you can tell there are great and caring friends here to assist you, just let us know if we can be of any help. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Thank you very much for your kind words

Thank you for your response
I have seen a machine they are using for fybromyalga pain on a fybromyalga site have you had any experience with it at all its a good thing if it works better than all those meds
hope I have entered my reply right lol

Hi Nubiene and welcome :)

to keep your answers relevant I have moved the other 3 threads to 3 separate forums where they are best suited

here are the links to your questions so you can check for answers

Neutropenia question on General health & Rare Disorders http://neurotalk.psychcentral.com/sh...d.php?p=786999

Fibromyalgia question on the Fibro forum
http://neurotalk.psychcentral.com/sh...d.php?p=786996

monoclonal gamampathy on the Peripheral Neuropathy forum
http://neurotalk.psychcentral.com/thread153706.html

No, I have no experience with any machines. I know researchers are working with qigong masters on routines that will trigger chi points, working somewhat as acupuncture does--which works to various extents for a number of people. But machines are new to me.

You've got lots of company in thinking that meds are always 2nd choice.
Prayers & :hug::hug:.

HI
This is a link to the small electro type device I read about
http://www.ukfibromyalgia.com/treatm...t-therapy.html

:) dont know if the quickreply is best or the one at the bottom of the thread my heads all over the place.

It doesn't matter, nubiene; both end up in the same place. The Quick Reply just doesn't offer as many options in formatting. No smileys either <smile>.

I'll check the link & let you know what I think (IMHO).

The link got me to an ad, not a product review, even tho It was apparently on a fibrimyalgia website. I am familiar with it--my acupuncturist uses it in connection with each treatment. Once he's seated the needles, he attaches live wires with alligator clips & runs a light electric current thru it. He increases it until there is the faintest response from the muscle, then backs off a hair. After 10 mins he usually readjusts the current.

It helps, but nothing like the ad suggests it will.

OK Thanks it is so exspensive as well I think they should be a bit more honest with these products people are sincere in their need for help. we want to hear the good and the bad I did see a couple of videos where people where giving it 100% saying no more tabs as I fished around the site
My rheumatologist diagnosed me gave me duloxetine and said see you in six months he also reffered me to the hydro pool which did not help last time I anttended when they said I had nerve damage without any proof you seem to have proffesionals involved tryimg different things:winky:

There were products of this sort sold in the US for about 20$ that ran off battery. This was in the early 1990s. I built one of my own from Radio Shack parts for around 8$. I'd use it on my neck & shoulders & follow it with wet heat. It really helped. I went up to D batteries, which I was too much--managed to burn my neck. Ought to have stuck with Cs (oh, yeah, did I mention that I'm also alcoholic?)

Ok that was clever making your own device
I am a recovering alcoholic so I empathise greatly. are you recieving any support.

Trying to they say no news is good news but to me the better you know the quicker you know your direction of purpose. Hospital heamatology told me today they will read my report from rheumathologist, and let me know by wednesday if my visit will be urgent or routine. The rheumatologist rang me as soon as the results were through for the abnormal blood protein. what do I make of that:(

I got sober thru AA, nubiene, thanks for asking! AABD: 9 May 1980. I had to part ways with a few folks who really didn't like me sober, but that was all right. My family kinda freaked ("Let me tell you, young lady, we do not have any women drunks in this family!" said my aunt. "No, ma'am," I said. "Till now, I guess." :D
My friends are wonderfully supportive.

I'd guess that the abnormal blood protein--in itself--yields no clear diagnosis. When they "read" the report, they will consider the protein level against the backdrop of other factors. Unfortunately, you're just gonna have to wait till Wednesday....

I'm so sorry. Waiting is such a hugh part of the medical game. :hug:

well done thats people for you they wwant to drag you down with them
ive lost loads of friends when i went through drug rape and had a breakdown it was the catalyst to release childhood trauma to the top
the abnormal proetein they said is moncolonal gamapathy igG with kappa light chains and intermittent neutropenia from what I have read having it since 2009 and only been told last week that it is something but maybe not malignant or it has to be checked every so often so that it does not turn malignat into mayeloma. the delay has not helped to me it means what it says
I have been habving the pain that goes with this problem so I feel that somethin is not right hopefulluy its not serious

Hi
I have been tempted had a glass for two days with my meal since this news and stopped there I dont need to ge badered I need my health and my head on my shoulders never went to AA did it on my own but maybe if I did I would not have a glass every so often that is when I go out with my husband for a meal.:hug: My mental health problems one being borderlline when I HAVE GOT OVERWHELMED and cant cope with my feelings I become disasociated I have drink a bottle and self harmed it has lessened 99% the last time was four months ago MY LIFE IS ONE BIG HURDLE BUT i FIGHT IF i FALL i GET UP STRONGER
SORRY THE CAPS LOCK DOES IT TO ME ALL THE TIME LOL
jUST WANT HAPPINES AND PEACE AND COMFORT IN MY LLIFE STRESS FREE AND PAIN FREE AND ENJOY MY GRANDCHILDREN

Hi, nubiene
 

I'll be thinking about you tomorrow & hope the news is good. I'm sure your stress level will improve just getting the answers after all this waiting.

Probably alcohol isn't a good idea for you just now, if only because it's often not ideal for the immune system. Have you found the forums here that deal with your major concerns? BTW, there is an alcohol/addiction forum: http://neurotalk.psychcentral.com/forum31.html

:Heart: :hug: all the best :hug: keep the faith :hug: ask those questions! :hug: :Heart:

My results
 

Hi hope you are well

Had results I was told I have mgus my PARAPprotein levels are at 11 he said its good
but the doc is going to do tests bone marrow and full skeletal scan on my bones due to the severe pain in my feet. I did tell him I was diagnosed with nerve damage 27yrs ago without being tested and now my feet are so painful
also have CFS I think they may have mixed up my pain. the haemo and the rheumo doctors. Or are not sure whats going on I may have both who knows

:) hope to hear from you