Myeloma?

richedie · New User Joined: 19 Feb 2008 Posts: 5

Hi everyone, I am 38 years old and am scared and not sure what is going on with me.....
They recently found an abnormal protein in my blood but let me start out below....

I have been a semi vegetarian for the past 10 years, always ate well even without being a vegetarian and have exercised and been healthy almost my entire life.

In October I had Ulnar Nerver entrapment surgery and two weeks into recovery I noticed tingling in my right foot.....then numbness...then n the legs. This was over a period of days. At first I thought this was some reaction to my pain killers after surgery. You can't convince doctors of a conneciton between illness and surgey/meds I found.

Anyway, the symptoms progressed to pain in the right foot, waking up one night with my left leg numb from the knee down, then one night my right knee was in so much pain I could barely move it for a minute till it loosened up. Some days I would limp due to pain in my right foot - the ball of the foot. Some nights I would have twitching muscles, trembling.

I noticed I was nauseous a lot at this time and lost my apetite, was intolerant to cold weather, had sever fatigue, and some weird issues swallowing. During all of this over months some symptoms got much better and I was mostly left with pain and tingling in the feet, swallowing issues from time to time and floaters in my right eye. Keep in mind, I have had a history of problems with my right eye and they think it has something to do with me being HLA-B27 positive which means I am at high risk for things like Ankylosing Spondylitis.

I lost about 15-20 lbs during of this, some due to no apetite and very light, healthy eating. I also stopped lifting a lot of weights so I lost some muscle mass.

Here I am 4 months later....still trying to see if this is Lyme disease, some odd food intolerance, systemic issue, mechanical issue, immune dissorder, etc.

Current symtoms are tingling in feet....mainly only when standing or walking, and pain in the ball of the right foot causing limping. I feel so much better resting or after a night of sleep. I have floaters in my right eye, also gets inflamed and pressure on the eye, dry at times......sometimes it feels like there is a film on the eye. I have pain in my right knee and hip but doctors think that is from all this limping and poor mechanics of my feet so I am also getting orthotics. I have some tenderness and pain in my left wrist, difficulty swallowing at times although lately it has been good.....just my throat feels like there is something swollen in it....odd.....and sometimes this hurts when swallowing.

I am seeing a chiropractor because I thought this may be due to back problems or pinched nerves.

Along the way, my docs say they have rules most things out but found an abnormal protein in my blood - IGG Kapp Monoclonal and that is when I went to see the encologist/hemotologist for a bone marrow biopsy and XRays. Can't Xrays cause cancer???? I know I have read that a few times.

I should have my result back next week but am scared!

In addition to the protein, my white blood cell count on April 4th, 2007 was 4.3, red blood cells - 4.58, hemoglobin - 14.3 and heatocrit - 41.8,
December 26th, 2007 showed white blood cells - 4.8, red blood cells - 4.17(L),
hemoglobin - 13.4 and hematocrit - 39.2

IGG KAPPA MONOCLONAL BAND PRESENT
Immunoglobulin A 274 mg/dl
Immunoglobulin G 1753 mg/dl
Immunoglobulin M 93 mg/dl

I get my results next Wednesday but I am scared of the possiblity. This is all new to me so I am not sure what symptoms to look for or how to feel, etc. I am just confused and scared.

Thanks for listening.

Rich

JaneMGUSuk · Posted: Sat Feb 23, 2008 6:02 pm Post subject: Monoclonal Protein

Hi Rich,

Sorry to hear you are having so many health issues at the moment, it must be a worrying time for you. I have had a look at your Haemoglobin, Red Cell and White Cell counts and they are all in the normal range apart from your last haemaglobin result but that is only 00.1 low, which means you could be becoming a tiny tiny bit anaemic, I am not a nurse but I have a chart showing normal blood levels and what it means if they are abnormal, so I looked up your results. Here are the normal levels for your future reference.

White Cell Count Normal Range 4.0 - 11.0 (low levels mean decreased immunity)
Red Cell Count (men) 4.5 - 6.5 (low levels mean anaemia and fatigue)
Haemaglobin Count (men) 13.5 - 18.0 (low levels mean anaemia and fatigue)
I hope these figures help.

The symptoms in your feet and legs sound like they might be a kind of peripheral neuropathy caused by the raised protein in your blood, but I am sure your doctors will be able to tell you more when you get your test results. The eye problem could also be due to the protein. The swallowing difficulty is strange it is a symptom which sufferers of Multiple sclerosis get but again until you see your doctor you will not have any clear answers.

I know how hard it is to wait for results, I too am waiting for blood and bone marrow results, I have been waiting over 3 weeks for mine and I get them finally on Thursday 28th Feb. I think being stressed out waitng for the results can cause symptoms in itself, so I have tried really hard to tell myself that all the worrying in the world is not going to change the results, whats to be will be and life can't be put on hold. The chances are we are worrying unnecessarily anyway because there is so much treatment available for illnesses nowdays and new ones are coming all the time, I am sure we will be fine. Smile

I too have a raised Monoclonal IGg Kappa protein. My level started out at 16 in 2002 when I was also 37 years old. I am 42 now and my level has risen to 44.8. I had 13% plasma cells in my bone marrow when it was tested over a year ago, the normal level should be between 3 and 5% plasma cells. I have been diagnosed as having a condition called MGUS which stands for Monoclonal Gammopathy of Unknown Significance. MGUS can remain stable for many years and cause no problems but 4 out of 10 MGUS patients will eventually go on to develop Multiple Myeloma which is a blood/bone marrow cancer. Most people with MGUS are elderly at least over 50 years old so by the time they get to the end of their life they may not have had the time to develop the full blown cancer and will die of an unrelated disorder.

I am a new member of this forum and I am not allowed to post links yet so I can only suggest you search for MGUS, and Multiple Myeloma and Myeloma UK on the web. Please let me know how you get on with your test results and I will post mine on here as soon as I get them. Feel free to send me a private e-mail and I may be able to send you some links.

Best wishes and keep positive
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

richedie · New User Joined: 19 Feb 2008 Posts: 5

Thanks Jane. I was diagnosed with MGUS. It is official. However, I have read that an infection, arthritis and other things can cause this. I don't know my level though!

Could this be causing my tingling and pain in the feet and sometimes weakness and tingling in the hands and wrists? I am scared.

The doctor says typically it is about a 1% chance of people going on to develop Myeloma. I stay very active and eat exceptionally well so i hope that helps to keep anything else at bay.

It just seems odd why this sudden and scary symtom of tingling came on in October with no warning.

I am also being tested for Lyme and spent $450 on orthotics.

Confused

-Rich

JaneMGUSuk · Posted: Wed Mar 19, 2008 8:10 pm Post subject: MGUS

Hi Rich,

I am sorry to hear that you have MGUS, in itself MGUS just need monitoring because it has a small chance of turning into Multiple Myeloma, but most people remain stable and the MGUS does not progress to anything. A healthy lifestyle certainly helps, especially with excercise to keep the bones strong.

There is a very good support group for MGUS patients on Yahoo. If you Google Yahoo Groups and then do a search for MGUS you will find a group called MGUSSupport, they are a great bunch of people and are very helpful. The more groups we join the more informed we become and therefore we make good patients and can make better lifestyle and health decisions.

I am also IGg Kappa my level is now 44.8 g/l I beleive in the US you measure in mg/l so my level in US would be 4480 mg/l which is quite high, my bone marrow showed 25% plasma cells, there should be 5% or less in healthy marrow so mine is also high. I no longer have MGUS, I now have Smoldering Multiple Myeloma.

My advice to you is to research MGUS on the internet and join an MGUS support group as well as this one. When you have clinic/hospital visits make sure you get a copy of all your results so that you can monitor them for your own info. You could also look into health supplements to try and reverse the MGUS or to keep it stable, there is plenty of info on a website called Cancer Active, curcumin (the yellow curry spice called turmeric) taken with bioperine is said to be very good and so is alpha lipoic acid, cod liver oil, quercetin and co enzyme Q10.

The leg tingling and numbness is not recognised by doctors as a symptom of MGUS because MGUS supposedly has no symptoms but if you ask most MGUS patients, nearly all of them suffer from it. The symptoms you describe are a type of peripheral neuropathy, I have it too, it is particularly troublesome in the evening and sometimes makes me crazy when I try and sleep and my legs wont stop tingling and buzzing.

Thanks for the message
Keep well
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

richedie · New User Joined: 19 Feb 2008 Posts: 5

Hi Jane,

I will look into getting my results back from the hemotologist soon. I am also going to join the Yahoo group.

Did you try any supplements? I eat really well so I know a lot of my food is already high in those and I do take cod liver oil as well. Have you tried any of these?

When did you start having the tingling, etc? Was it before your diagnosis?

I started having sharp pains in the ball of my feet and tingling in the feet, lower legs. Lately, the tingling creeps up but I haven't been limping since regularly using orthotics so my podiatrist and neurologist thinks the timgling was all from bad arches and metatarsalgia. Other symtoms they said could be anxiety. Now I am not so sure.

Big problem is the feet have been limiting lately. I have always been very active! Lately walks can be a pain and we went to New York and I had such hard time. My right arm even started getting week and tingly.

Do you have any swallowing problems?

It is so weird because if it was the MGUS causing the tingling why is is really noticable after sitting a certain way or having my feet in a certain position. Why does it pretty much go away after sleep? I will say the hemotologist and rheumatologist I saw both said MGUS can cause the tingling and feelins I have experienced. The Rheumy mentioned giving my Neurontin.

I also heard of a link from Celiac to MGUS to Myeloma. Basically avoiding gluten.

I am scared now and really upset.

* Okay, I just joined the Yahoo group but don't see exatly how you get involved in discussion. Is it like a typical forum?

I am worried. I was always a positive, peaceful, happy guy. Now, I am an angry, depressed guy who feels he doesn't want to live.

JaneMGUSuk · Posted: Thu Mar 20, 2008 9:39 am Post subject: MGUS

Hi Rich,

I can understand why you are feeling depressed and that your zest for life has taken a bit of a nosedive. I too was depressed, its not unusual to feel afraid and concerned about the future, especially when our legs tingle and ache and we don't feel like our previous selves. Sometimes its not as simple as just pulling ourself together, it sometimes requires some therapy or medication to cope and that's nothing to be ashamed of in our situation. I have been on antidepressant medication for 2 years now and it has helped a lot, I still get the occasional bad day but I wouldn't be normal if I didn't. I was worried at first when I started taking the antidepressants because I thought they would alter my personality and make me have a false persona, but I was wrong and I feel great. You could try St Johns Wort if you prefer a natural antidepressant, but check with your doctor before you take it and it takes time to kick in and have an effect sometimes up to 3 months.

The fear of MGUS turning into something worse can be a bit like having a ticking timebomb type feeling, we are almost waiting for it to take a turn for the worst. I had this feeling and still have to a cetain degree, but we ruin our quality of life by feeling this way, being worried and miserable is not going to change anything at all, because we still have the MGUS, so why allow it to control us and make us worry all the time, I refuse to be miserable and I refuse to worry and add stress to my life, stress is a killer too and I am not planning on allowing stress to give me high blood pressure and other things.

If you have MGUS for the next 40 years and it never turns into anything else, you have ruined 40 years of your life by worrying for nothing, thats how I figure it. I also figure if I get Myeloma in 5 years time there's nothing I can do about it, its beyond my control, so whats the point in worrying and its treatable and a new treatment comes out for myeloma every 6 months to a year, so soon it will be classed as a chronic illness rather than a terminal one. Now the brilliant news is that they have found the gene responsible, so its only a matter of time before even more treatments or even a cure becomes available, so I refuse to worry, I plan to continue to enjoy my life to the full, whatever.

The problems you have with your feet and legs could be peripheral neuropathy or raynaud's (not sure of spelling) basically they are all to do with neves and circulation. Being as you are a fit and active person with a good diet, I cannot see why you are having these problems, it must be something medical. Have you thought about having some accupunture to help, it is supposed to be really good. Stretching properly before and after excercise is beneficial as is a massage of tired achy muscles, some ginger oil and a pair of firm hands is all thats needed, so its cheap and will relax you. You could also get a book on reflexology and practice this on your feet, I know it sounds crazy but if it works or makes you feel good and relaxed then brilliant.

The strange swallowing problem is something altogether different, it could be stress related and from your message it probably is, it can also be something to do with Multiple Sclerosis, but I guess your doctor will or has ruled this out. I don't know if it has anything to do with Lyme's disease as I have not researched that yet, but it may be a symptom, I am not a doctor so all these things are just possibilities.

I hope that I have been of some help
Take care
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

richedie · New User Joined: 19 Feb 2008 Posts: 5

Thanks Jane,

I need to get to bed but I'll write a little now and more tomorrow.

You mentioned, most of us have the tingling in the legs and/or feet but then you seemed confused as to why I would have this symptoms unless it was raynaud's or something?
Isn't it common with MGUS?

Weird thing is, my Internest said no way is it related but my hemotologist and rheumatologist said yes.

I will continue to exercise, eat well and take supplements in hopes of fighting off any further progress of this thing. Sometimes I wonder if this started from an infection or reaction to my surgery in October.

My quality of life is worse however. I used to snowboard and hike. No longer. My feet hurt too much. We are going to Disney in December and that will be tough.

Rich

JaneMGUSuk · Posted: Fri Mar 21, 2008 2:51 am Post subject: MGUS

Hi Rich,

Sorry for the confusion, what I meant is if it is peripheral neuropathy then it is probably the MGUS causing the peripheral neuropathy, thats the medical term for your symptoms, but that it could also be other things. Also someone fit and active, wouldn't normally suddenly get these types of symptoms, so there must be an underlying medical cause, like the MGUS. There is a website called PDN info which is quite interesting if you Google it it should come up.

Best wishes
from Jane
_________________
Best wishes From

Jane in the UK

LIVE, LAUGH AND LOVE LONGER Smile

brainman · Posted: Fri Mar 21, 2008 3:08 am Post subject: Re: Myeloma?

I know that my FIL had some neuropathy but not sure what caused it (he did have MM and was taking some form of chemo for it). I too have some neuropathy to my toes. It started back in 1993 while I was taking chemotherapy for my brain cancer. One of the components was to blame (Vincristine).
_________________
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
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richedie · New User Joined: 19 Feb 2008 Posts: 5

What about the gluten link? I saw on the Celiac forum, many looking at a link between gluten and MGUS, etc.

PDN? I'll look it up.....but I am not sure what I have at this point.

I thought it is rare for the IGG form to cause this?????

I have my recent test results in front of me but not sure it has the numbers you all mentioned:

IGG KAPPA MONOCLONAL BAND PRESENT
Immunoglobulin A 274 mg/dl
Immunoglobulin G 1753 mg/dl
Immunoglobulin M 93 mg/dl

I have always taken such good care of myself so don't understand why my white and red blood cell counts are so low.

I got this from the Yahoo Support group:
"We are told MGUS causes few symptoms .
There are three types of immunoglobulins that are usually affected
,IG'a ,Ig'g and IG'm
Ig'm MGUS is recognised can cause symptoms like you describe but
neuropathy and MGUS have been found rarely with the other 2."

Site:
[url]http://www.lef.org/protocols/neurological/neuropathy_01.htm[/url]

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