An appeal to my blog readers…

I returned to Florence less than a week ago but have been tremendously busy…recovering from jet lag…zzzz (=uff, it really hit me hard this time around…zzzzz)…going back to work…zzzzz…cooking…spending a long weekend morning with Stefano in the “Oasi di Focognano,” a WWF bird sanctuary here in Florence (see photos; don’t you just love the grey heron dancing the boogie oogie oogie? 😀 )…playing cards with my girlfriends…but also reading, doing research and making, or trying to make!, a few connections…

Those connections are the reason I am appealing to you today. I need your help!

Basically, I would be very grateful if you could tell me if, before being diagnosed with MGUS, SMM or MM, you came down with a viral infection of some sort. If so, do you remember what it was, and could you provide a few details, anything you think might be relevant? Just to give you a quick example, in my final year of grad school at the University of Toronto, I came down with Epstein Barr…oooh, a nasty critter, that one. Anyway, that occurred only a few years before my MGUS diagnosis…

If you don’t want to leave a comment here on the blog, please use the Contact form (over on the right) or send me a message via my private e-mail address or Facebook…

Your input is vital for the rather exciting bit of research I am doing right now, so I will be immensely grateful for any help. Needless to say, I will respect everyone’s privacy, just as I always have. Hmmm, I can’t think of anything else…except this: thank you so very much!

Okay, I need to get back to work now. Ciao a tutti! 🙂

31 Comments

  1. Magaret, my diagnosis of MM was discovered when I was suffering from cramps or pain in the chest (which was not bone pain). The only thing the doctors were able to find where a high sedimentation, which indicates inflammation ….

    (and MM is still quiet 😉 )

    Hans

  2. Dear Margaret, I don’t know if this is of any importance but when H was a teenager he had what was believed to be Rheumatic fever. Of course it could have been something similar but it was indeed a very serious illness and something that frightened his parents at the time. He was confined to bed and rest for many weeks. This left him with a slight petie mal for which he took Tegretol – carbamanzepine(sp) he has taken this drug for most of his adult life although no longer affected in anyway from this. It’s a thought on my part, as I know this drug lowers white cells, could it also alter them? and then what about this dreadful time of fever. Over to you now. All best wishes with this research.
    Sincerely,

  3. My husband Steve was diagnosed with MM August 2009. This followed a series of infections which were probably bacterial with some viral mixed in. Initially we put it down to stress at work but it got to the point where he would get ill (chest infection/sinus infection), be off work for 2 weeks which he spent most of in bed, then return to work only to be off again about 2 weeks later. He had what the doctors think was Glandular Fever in 1990 and he lost 3 stone and had over a month off work. He then had a DVT in his leg in 1998, another in the same place 2 years later (for which he is now on warfarin for life), and then the recurrent infections over the last 3-4 years. He was diagnosed with Hypthyroidism approx 2.5 years ago for which he takes Thyroxin and then in July last year, he developed Inter-Cranial Hypertension and only after being in hospital for 2 weeks and lots of tests was it discovered that he had MM. It’s difficult to say what is connected with what – there are only 3 other recorded instances of MM and Hypertension, and it could be that he had smouldering for years (hence the DVTs), but interestingly enough, he worked part time at a petrol station when he was at university to make enough money to pay off his student loan back in 1983/4.

    Hope this helps in your research!!

    Best wishes.
    Anne (Steve’s wife)

  4. Hi, Margaret,

    Not flu, but maybe flu vaccine did it for me. I had many “ok” flu vaccines in the period 1971-1980. Then in 1980 a flu vaccine cause my arm to swell clear down to my wrist bone. Looked like a rattle snake had bit. Me.

    Ok, now more flu vaccines until 1997. In 1979 my dad prevailed upon me to be tested with the flu vaccine to see if I was still allergic. Immediate allergy testing with flu vaccine was negative. Unfortunately no delayed testing was done.

    Dr. injected the vaccine. 14 days later huge rotator cuff inflammation lasting until a steroid shot into the shoulder 3 months later. Rheumatologist discovered I had developed autoimmune disease of some sort. ANA was 2560 where over 20 was considered abnormal. Internist refused to believe it and insisted on another flu shot in fall of 1998. Bingo, 14 days later, same thing, only in the arm opposite the injection, signifying the reaction was systemic.

    In 2002 autoimmune disease really came crashing down on me. That’s when the doc discovered monoclonal gammopathy. Gradually signs of scleroderma emerged, and I was finally diagnosed with that this summer. The scleroderma doc tells me 15% of his scleroderma patients have paraproteins.

    Other studies also show a connection between autoimmune diseases of various sorts and MGUS/myeloma.

  5. No, Margaret, before being diagnosed with MGUS I did not came down with a viral infection of any sort.
    About 15 yrs before MGUS dx, I had vaccine against allergy to plants (for 2 and half yrs).
    Ciao.
    Francesco.

  6. I have MM, all bloods normal except M-spike.
    Had double pneumonia atleast twice in the 7 years before diagnosed, then Cellulitis in right shin for over a year, on 600 mg. for almost a year, They finally found the 5 inch hole in my left femur, in July ’08. Cellulitis came back on 100 mg of steroids and 600 cyclophosphamide, went away when dose lowered…. PMH and OHIP gotta luv ’em.

  7. I had chronic Gum infection for 2 years before developing MUGS. It was ongoing process of developing new gum layer and destroyed by bacteria. Now this problem got fixed but my MUGS did not get reversed.

  8. A few years before being diagnosed I had gone through the hepatitis shots. The first one wasn’t bad but I got really sick for the second and third one. Normally I would not do any of these shots but there was a scare at the community college I work at and they recommended it. I also get a lot of cold sores if I let stressed or don’t watch my diet. Hope this is helpful 😉

  9. Hello Margaret,
    My MGUS was discovered in 1998 during investigative bloodwork done by my Rheumatologist. I didn’t quiet understand what it was and I have no idea how long I have had it. I do know I was a very sick child, always catching the worst things and I had a case of Mono in highschool that nearly killed me. I lost handfuls of hair from the fevers and could barely breathe from the swollen glands in my neck. I was diagnosed with Fibromyalgia at same time as MGUS and recently CFIDS.

  10. Hey Margaret,

    My mom didn’t actually get sick. But she received the H1N1 flu shot right prior to being diagnosed with full-blown MM. I’m almost positive that she had MM for a while before that (back pain, etc.), but maybe the flu shot triggered something?

    Hope all is well!

    Lance

  11. I’ve enjoyed good health all of my life! Except for the normal childhood illnesses, I’ve had little more than a cold. Shortly before my SMM diagnosis in July 2006, I was diagnosed with an ear infection, however, there was no pain! How odd! My ear canal was severly swollen to the point that it affected my hearing. After 2 rounds of antibiotics…still no pain…I could tell very little difference. I gave up on the antibiotics and the swelling gradually went away. Shortly thereafter, while donating platelets to a sick friend, Smm was discovered. I’m still smoldering nicely after 4 years and 3 months…but who’s counting! 🙂 Hope this helps! Donna

  12. Hi Margeret, I had several “smaller” viral infections, the worst one was a flu. Before the discovery of SMM I had a smoldering infected tooth. Several dentist said, that my inlay was ok, despite of my bad feeling with it. But it wasn’t. I develop a pain, they opened the inlay… and underit were bacteria country….uggghhh…1 month later they found the smm of the type iga kappe in a routine checkup. And: I had an allergenic shock in india in varanasi during a journey. I’m now 38 years old. Hope it helps. Thomas

  13. Had pnuemonia several years before diagnosis never felt the same again. My MGUS diagnosis came hand in hand with Celiac. My mother also had MM. I’m currently in the SMM arena and plan to stay there. We all appreciate your research and dedication Margaret, you keep us connected. Thank You, Debi

  14. My husband was diagnosed with MM in Aug 2009.
    As of now his doctors say it is MGUS but we are waiting current test results.
    In about 2005 he had dry eye, a nasty facial tick, fatigue, thyroiditis, and several other odd medical problems. These situations, except for a milder twitch, corrected themselves and
    he also worked at keeping away from meds. In the process his low white count was noticed and he was urged to go for a bone marrow test.
    Since he felt better he didn’t go until early 2008 when routine tests were still indicating low white cells. He has always had digestive problems that through the years were said to be ulcers or maybe IBS or stress. Careful diet keeps this to a minimum. He is not prone to infection, gets over colds quickly (curcumin?)
    I have often thought the intestinal turmoil over the years (he is 65) may have been autoimmune leading to MM/MGUS.

  15. Hi Margaret
    I have always had a very good health until the diagnosis of MM in july 2009. The only serious illness was mononucleosis at the age of 25 (I am now 61), it hit me really bad and I was very ill for everal months. I have had the flu vaccine 3 or 4 times the last 7 years, but without any side effects.
    Wish you luck with your research.
    Johanne

  16. Hello Margaret!

    I’ve been seeing hematologist for many years (since 1993) periodically for EBV infection. I was told that I had a kind of a “chronic” mononucleosis, recurrent activation of EBV that causes fatigue, swollen lymph nodes, sub-febrile condition etc. Sometimes I was sent to specialists for infectious diseases (don’t know what you call them in English), but they all disagreed with this claim saying that after an infection with EBV titers are present in persons life permanently with no special clinical meaning. I was usually sent away with “no treatment needed from our side”.
    And now I got some articles from a very esteemed immunologist that describe a so called CAEBV – Chronic Active EBV. If I haven’t sent this article to you yet, I’ll be glad to do it if you wish. My hematologist (other one, for the former one retired meanwhile) agrees with him and speculates that it might be EBV that caused mutation at the lymphocyt B providing M-spike and my MGUS.
    This spring it came back again, titers jumped up and doubled compared to the ones measured before. And interesting – also my free K/L ratio worsened. In the middle of the summer both titers and K/L ratio came down.
    Just today I got my new blood tests back and K/L ratio is THE WORSE ever! I kind of expected it for I really feel crappy since the beginning of September, but it still knocked me off my feet. Shock! Now I’ll check EBV titers again and I’m really curious what will show. My hematologist promised me a new BMP already in July if K/L ratio should still be rising (it has been gradually since March).
    What do you think Margaret – is BMP needed. It’s SOOO painful…
    Oh, one more question – I’m taking 4 grams of Curcumin daily and am now planning to start with 6 grams. Or should I go to 8? I’d appreciate your opinion. And – how about Ganoderma Lucidum? Do you still combine it with the Curcumin?

    Sorry to pass answers instead of information. But I do hope my experience with EBV will add a puzzle in a bigger picture.

    Stay well!

    Robert

  17. Hi Margaret.

    Didn’t want you to think I’m ignoring your question. I do plan to answer upon my return to Toronto. It will take me a while though, because I need to analyze my circumstances.

    Here is what I do know.

    My MM manifested immediately upon the death of my Mom for whom I was the primary responsible caregiver. I had spent a lot of time in the hospital with her, including one occasion when I slept on the floor (so possibly picked up nasty stuff) but I did try to put lots of clean sheets down first.

    However, my thought is that I had something before that, and that is what I need to research. I had lots of pain in the kidney area for several years. Doctors blamed it on weight lifting.

    I will try to track back to when the pain began, and figure out if I had some kind of flu or virus that triggered it.

    I wonder though if the trigger for possibly a smouldering MM was emotional. Just speculation of course.

    h

  18. Ciao Margaret,
    before SMM diagnosis in 2009 I didn’t get any specific viral infections, neither flu. I have been allergic (graminacee and betulla) since I was 10 years old and have had vaccine for allergy for several years; when I was about 22 I had a slight anaphylactic shock after vaccine. My white count was always near the lower normal range (now unfortunately they are below it – that fact led me to SMM diagnosis)
    Un abbraccio
    Doriana

  19. Hello Margaret,

    Just reading your blog, I have just been diagnosed MM, age 42 and according to the ‘clever’ people I am in the stage one category. Anyway, back to your question…….when I was 21 I lost perhaps 2 stone in weight, was very lethargic and constantly tired for about 5 months. White cell count through the roof, doc said I had glandular fever, specialist thought I had leukemia. It sorted itself out over the next year or so, but somehow I was never just quite right.

    I’m a second year Psychology degree student, so if you need any help pulling out research work from Athens and the like, drop me a line.

  20. Hi Margaret,

    Before his diagnosis as MGUS more than 8 years ago, my father did not suffer from any kind of infection, etc, which surprised his hematologist, as I remember–because his values were pretty high for MGUS. After the diagnosis, he protected himself well, and did not have any kind of serious infection. (except the fact that he had a very serious infection after a tonsil surgery after which he had several bleedings and was slept with anesthesia for 3 weeks, so I strongly recommend to be extremely careful when going on surgery). He developed MM recently and started drugs. Still, he does not have much infection problem, time to time sneezes,and that’s all so far.

    Good luck with the research!
    Duygu

  21. Hi Margaret

    Thanks for your fantastic health blog, I have been following it since my MGUS diagnosis in July this year. My MGUS was picked up from routine blood tests, but on previous tests a Doctor in passing said that I had had the Epstein Barr Virus. I cant remember having it, so it must have been a mild form with little symptons. Hope this helps with your research. I am currently on the trials in Australia with Curcumin, not sure if on placebo or curcumin at this stage, but I will be on both for three months each then at the end on a higher dose 8gm of curcumin for another three months.

  22. Hello Margaret — It’s good to know you and thank you for doing the work that I feel incapable of right now.

    I had ‘mystery’ illness, hospitalization for a week, in 1980. High fevers, very heavy menstrual bleeding. They thought it might be PID. Don’t remember much else. Tuberculosis ten years earlier. Inflammation which my MD and Rheumatologist said was not Lupus, but to treat it as though it were ??? Lots of inflammation and pain and no explanation. Spent most of the decade dizzy and with severe head pain. In August 2006 had shingles. February of 2007 was dx with a solitary plasmocytoma of the skull. Absolutely NO other signs of MM until last month. MGUS now, based on blood work. I’m 48 years old.

  23. Oh! Forgot… I finally got the Lupus dx in 2008. I tried to blame the skull lesions on Chernobyl — spent 12 weeks in Eastern Europe right after the accident. I don’t know.

  24. Thanks Margaret for investigating this subject. Prior to being diagnosed with IgA MGUS, I had a very strange experience with a virus where I lost my sense of smell for sometime. It was so bad I could not smell gasoline.
    The fact that IgA is associated with mucous membrane has made me wonder. My nose often has a stingy sensation similar to sucking water up your nostril. It does seem to lessen when I take curcumin.
    I was told I probably had epstein bar virus when I was in my early twenties.

    Nora

  25. I have been sick off and on all my life and I will try to recap. Sorry it is so long. As a baby I had asthma that lasted for many years then suddenly went away. At about 5 I was hospitalized because they could not keep me awake, I just slept all the time for over a week. No diagnoses or reason know of this. I got infections very easily, in my last year of high school I had emergency removal of fist my tonsils and then my appendix. I had monthly migraine headaches. I gave birth to 4 children and during those years I was very healthy and energetic. When I was in my 30s I began just feeling ill all the time. It would be several years before I was diagnosed with Fibromyalgia. After this it seemed the doctors like blowing off my illnesses as being FMS. I developed horrible migraines with extreme dizziness, weak legs, and numerous problems. I developed a lump in my right arm that was though to be cancer during tests in 1985 but then it disappeared. Since then if I over used my arm or wore certain bras it would become very painful. I developed sever back pain (in the coccyx and lumbar region) and then another spot up in my upper neck/back region. Many MRIs for migraines and back issues, no one ever felt they saw anything of significance although I did have one unexplained brain lesion. They never found any evidence of Epstien Barr until this Spring. I was told I have had it / an or Mono for a very long time. I have seen doctors aggressively trying to find out why I am always so ill, can’t do very much with out getting over exerted or some kind of infection, or other illness. I have been told a number of times that I have tested positive for an unknown virus or infection. I respond well to antibiotics even when there is no evidence of infection. With antibiotics it is like I am on a pep pill, I feel wonderful, life could not be better, I am awake and have lots of energy. I live with chronic pain and yet I am allergic to NSAIDs so this means I have to be on a narcotic for pain relief. I was diagnosed with Hypothyroidism, Hypertension that we have had a hard time to get medications to control. Along with all this I also have developed Osteoarthritis. In the last few years my migraines went from standard migraines to ones that are similar to strokes. I have many periods of dizziness and weak legs and many other neurological symptoms. Also in the last few years the complication with the lump in my arm has returned. I have continued to search for what is causing my problems. Doctors have continually blown me off though I have known I was sick with something much ore than just Fibromyalgia.
    Finally one of my doctors saw me at my worst and sent me straight way to the ER where they blew me off as just being a little low on potassium. This doctor’s concern caused him to break away from the stride of others in my area and referred me to a new immunologist who was his friend. When I finally met this new doctor he knew my chart, he asked questions and listened to my answers. He ordered many tests and I felt he was looking at Lupus, which I had been tested for by 3 other doctors in the course of that same year. He sent me for a sonogram of the painful lump in my right arm. The first real news came when the radiologist came in when the tech was done with my test. He told me it was not a cyst, not an enlarge lymph node but rather a mass. When I told him that no one even wanted to examine my arm he told me, “Well they will stand up and take notice now.” That is one thing that has be very much the case since then. I was then sent for an MRI with contrast. My return visit to the Immunologist was amazing and shocking. He told me that I had Lupus (he put me on Paxquinil which has helped with energy and lowing pain levels.) He then told me that I had FHH which was responsible for my Hypercalcemia. He verified the lump in my arm which would need to be tested further, a biopsy and maybe a bone marrow test. Then he asked what I had been told about my MGUS diagnosis and told that my M-Spike was 4. No one had ever explained to me that I had this much less what it was. What a sweet man he explained it in a way as not to set fear in me. I was so elated to have a reason for why I felt ill and that it was not just in my head like several doctors had implied. More tests were ordered, blood work, 24 hour urine catch, and an appt with a Hematologist. I know I have been very blessed and I feel very strong and certain that I will have good help and can look forward to treatment that will help me with this disease. The Hematologist said I have Plasmacytoma. I am going for an MRI of C 5 and 6 this week to see if the compression they have found has anything to do with the MGUS. I find research showing both spine problems and Lupus as apart of MGUS and M-spike activity. Where on earth I fit in to all this is mind boggling. THe only thing that may answer my life long illnesses is that I was born in AZ not long before the Nuclear Testing in Nevada and that nuclear dust clouds settled over parts of AZ. While this may not have affected adults it has been believed to of affect many children and infants.

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