Most recent post first:
April 14 2013 post. Epstein Barr, or infectious mononucleosis. Here we go again.
It’s been ages since I last wrote about a possible viral connection to the insurgence of MGUS…At one point, a few years ago, I even had the brilliant (?) idea of asking you all to let me know if you had had a similar experience to mine. What happened to me is that I began having what I now know were possible symptoms of MGUS (mainly, fatigue fatigue fatigue) while I was in grad school, right after I had recovered from a bad case of Epstein-Barr (= EBV, from now on)…This would have been April of 1995 (I’ve written about this before on the blog…just do a search for “Epstein Barr”).
After my appeal on the blog, I received a number of messages and comments, but I just couldn’t detect a trend or anything that might be useful. Not at that time, anyway. So I just put all that data away and, well, eventually, forgot about it. After all, I reasoned, even if I discovered that my MGUS, now SMM, is connected to my bout with Epstein Barr, how would that help me/us now? I mean, it’s a bit too late for prevention, right?
However, in the past few days I’ve renewed my interest in EBV. What happened is that I came across a Mexican case report about an 11-year-old girl diagnosed with myeloma (!) associated with, yes, EBV: http://goo.gl/othmW
I was able to read the full report, so I’ll be able to give you a bit more information. What we know from the abstract is that the above-mentioned girl was 9 years old (!!!!!!) when a plasmacytoma was found at the base of her skull. She tested positive for EBV but had no cancer cells in her bone marrow at that time. She was given steroids/local radiotherapy, and her symptoms disappeared. For a while.
Two years later she went back to the doctors because of generalized bone pain. Unfortunately, bone lesions were found in several areas of her body, including the skull, ribs, humerus and spine (and various other bones, too). By this time she had 95% plasma cells in her bone marrow. Incidentally, the full study mentions that gadolinium was used as a contrast agent in her imaging tests…Uhm.
Anyway, this was her diagnosis: plasma cell myeloma with kappa chain restriction/IgA+ at a Durie/Salmon clinical stage of IIIA.
One good thing: she didn’t have any kidney damage. She began treatment with dex, thalidomide and zoledronic acid….and, in February 2012 (at the time the study was written), she was awaiting a stem cell transplant.
An important bit of information: EBV was found in the nuclei of 70% of the little girl’s myeloma cells (= two different BMB specimens). 70%!
According to the authors, EBV can cause a polyclonal B-cell expansion, which can eventually develop into a monoclonal malignancy. Eh??? What the haystacks does that mean? Okay, step by step:
- B-cells or B lymphocytes, as we know, are the cells that become malignant in myeloma. They get damaged and start proliferating like mad, totally out of control.
- I thought precursor cells were stem cells, but I checked, just in case. No, they aren’t. While precursor cells are similar to stem cells, they’re more specific. The simple difference between stem and precursor cells is that the former can “reproduce” themselves forever and ever, but the latter can’t.
Simply put: the EBV virus appears to be able to infect (and hide inside the nucleus of) these B-cell precursor cells, which activates a whole series of unfortunate events that eventually lead to the development of myeloma.
Now, the authors note that the association between multiple myeloma and EBV seems to be a rare occurrence. Yes, that may well be true…but then, how many people newly diagnosed with MM or MGUS or SMM get routinely tested for EBV? Were you tested for EBV at the time of your diagnosis? Probably not. I certainly wasn’t.
Here’s some more food for thought:
- EBV frequently doesn’t cause any symptoms. That is, most people are EBV carriers but don’t know it.
- Something like 95% of the world adult population has been infected with the EBV virus. Yes, that’s right. 95%.
- However, 95 % of the world’s population does not have myeloma or MGUS or SMM….otherwise it wouldn’t be considered a rare type of cancer, right?
That said, why couldn’t some of us have gotten this icky thing after a bout with EBV…I mean, why couldn’t EBV possibly be at least one of the causes? After all, I read somewhere that it only takes one wacky cell…and bam!, eventually we have myeloma (or MGUS or SMM).
It all begins with just one wacky, abnormal cell.
So here are my final questions of the day:
- what if the EBV test were part of the routine tests we have to have when we are first diagnosed with MGUS, SMM or MM?
- What if an association could be established, at least for some of us?
If (again, for some of us) an association were found, then perhaps our myeloma researchers could devote a bit of their time to studying this issue. See:http://margaret.healthblogs.org/2010/10/28/pieces-of-the-viral-puzzle/
Well, I’m intrigued (again!)…and I want to do some more digging. I’ve found a few, recently published studies on this topic. Furthermore, as I mentioned earlier, when I have a bit of time (SIGH!) I’ll go back and look at the data you have already sent to me. This time, I might be able to put the puzzle together, in spite of the missing pieces…
And that is precisely why I’d very much welcome your thoughts and experiences and help…again!!! Thank you!!!
September 30 2011 post. Today I got caught up with my Science Daily articles, one of which triggered my curiosity: http://goo.gl/Ogr7B Now this is really really REALLY interesting: if you TREAT cytomegalovirus, a really crappydappydangerous type of virus that 70-75% of us adults have inside of us (luckily, it remains dormant in most cases), you can REDUCE the growth of brain tumours. Note: 92% of brain tumours are infected with cytomegalovirus, or CMV. Wow…as soon as I read that, I rushed to consult PubMed, the main source I use in my research. Not surprisingly, when I did a search for CMV and myeloma, I found some interesting abstracts…
It turns out that myeloma patients who have received chemotherapy treatments and stem cell transplants are at risk of awakening this terrible virus. The consequences can be scary, even devastating…
Here follows a selection of some of these studies…
This one concerns patients who have received chemo treatments but not stem cell transplants:http://goo.gl/WXOO7
Infections in myeloma patients undergoing stem cell transplants are discussed here:http://goo.gl/IWfc9
This full study shows how different treatments put patients at risk for different infections:http://goo.gl/VTqWg
A fatal case of myeloma and CMV (full study): http://goo.gl/z2Npw Scary…
I’ll stop here, but you can find other studies on PubMed if you’re interested in the topic…
The viral connection pops up again…and again…When I get back to Florence, I have some work to do…
UPDATE: as I was fishing around on PubMed for natural ways to combat CMV, I found an abstract on the wonders of caprylic acid, which I’d never heard of before but apparently can be found in the milk of some mammals and in coconut oil…Here is the link: http://goo.gl/UNZsn Note: this stuff is used to treat candida (Paul, what do you think?)…Hmmm…
June 23 2011 post. As I announced last week, I’ve finally decided to tackle the possible virus connection topic that we began discussing seriously last fall (boy, time does fly, doesn’t it?!!!) here on the blog. Back then I received many ”viral” messages and comments…so many, in fact, that I simply felt too overwhelmed to do anything with them. I tried, but my brain kept going into shutdown mode. I had to give up finally and look at other topics…
Oh, it wasn’t just the messages, mind you…I was also overwhelmed by all the virus connection studies that are still sitting inside a file on my desktop. To be honest, I still feel a bit overwhelmed, but okay the time has come to stop procrastinating, to sift through this rather daunting mountain of information and try to figure out if there could be a pattern or something that might be useful to us…
I need to do this slowly, though, in order to retain my sanity. So it’ll take some time to get through all the material and organize my thoughts and your comments (Note: new virus connection comments are welcome…). Uhm…please put on your patience hat…
I’ll begin with a Hungarian study published in 2006. As luck would have it, the full shebang is available online: http://goo.gl/Ot37F This is great, since you can read it, too, and see if I’ve missed any important bits or misinterpreted the data etc.
These researchers tested 69 MM patients (48 in stage III, 21 in stage II) and a smaller number of MGUS folks (16 with MGUS and 10 with Waldenström’s macroglobulinemia) for the presence of four herpes-related viruses, as follows:
- Epstein-Barr, which I myself contracted toward the end of my grad school period (and, if my memory serves me right, I also had mononucleosis in my last year, undergrad, at Harvard; I don’t have those medical records anymore, unfortunately, but I remember being quite ill at one point and going to the student health service center…).
- Cytomegalovirus or CMV (I have a good story there, but that’s fodder for another post…).
- Two herpesviruses: HHV-6 and HHV-8, which (the latter only!) has been associated with the development of multiple myeloma.
More on HHV-8: this virus has also been implicated in the progression from MGUS to MM. Hmmm, I don’t think I knew that…
The control group consisted of 44 patients with non-Hodgkin’s lymphoma…Now, I confess that this part puzzled me…Why use NHL patients? There is no explanation for that. I can only surmise…I must admit that my lack of a scientific background irks me at times like these…
At any rate…these researchers discovered that the most common virus present in the bone marrow and blood both of the MGUS and MM group was, TA DAAA!!!!, Epstein-Barr or EBV. Yes, it turned out that more than half the patients had had EBV at some point (indeed, some were actually in the acute phase of the EBV infection at the time of the study). So they conclude (see abstract) that:
- since 13 of the HHV-8 positive MM patients also had an acute EBV infection and
- since there was nothing similar in the control group, then
- in addition to HHV-8, the transitional reactivation of EBV may also play a role in the pathogenesis of MM.
Pathogenesis (I had to look this up) means “the mechanism by which the disease is caused.” Aha. This was the most interesting part of the study for me, especially given what I mentioned above, i.e. that I almost certainly contracted mono in college and then, less than ten years later (while working toward my Ph.D. at the University of Toronto), I tested positive for EBV…I had a recurrence, it seems. So…could EBV have been my trigger or one of my triggers? Notice, in Table 2, that more than half the folks in the NHL control group also tested positive for EBV…Is this just a coincidence? Oh how I wish this study had had a healthy control group, too…
Well, it didn’t, so let’s fast forward to “Results.” As mentioned above, more than half the MM folks tested positive for EBV, also known as HHV-4; however, the difference between the MM and the control groups was only significant for HHV-8. Oh. Okay.
As for the MGUS folks, I thought it was interesting that nine (out of sixteen) had EBV antibodies. Again, more than 50%…
Interesting excerpt: In the history of HHV-8 research, it has been exceedingly difficult to obtain lymphoid cell lines (e.g. effusion lymphoma) devoid of the EBV genome (Renne et al., 1996; Said et al., 1997). This raises the issue of a possible interaction between these two lymphotropic herpesviruses, at least in diseases of the lymphoid system. Could that have been the reason for choosing the NHL control group?
So what’s the bottom line, here? Well, there certainly seems to be a potential association of MM and HHV-8. But there is more. The final sentence in the study reiterates the final sentence in the abstract: The data also indicate that in addition to HHV-8, the transitional reactivation of EBV may also play a role in the pathogenesis of MM.
Personally, I think there must be something to the EBV connection…perhaps not for all MGUS, SMM and MM folks, but for a subgroup, anyway…
October 28 2010 post. Pieces of the viral puzzle. This article, http://www.sciencedaily.com/releases/2010/10/101025161217.htm, is about (ta tata taratata, drum roll!!!) the relationship between microRNAs and the Epstein-Barr Virus (EBV). A new study shows that EBV uses its own viral microRNAs to evade the immune system. Incidentally, EBV is more common than I thought: up to 95% of U.S. citizens have it. Anyway, in most cases the virus falls into a deep slumber and never wakes up again…but some unfortunate EBV-infected folks, e.g. those with weak immune systems, can develop cancer (Hodgkin’s lymphoma, e.g.). One of the study authors concludes that microRNA activity has a real and potent effect on health. No kidding. I found this article absolutely fascinating and plan to re-read it more carefully ASAP.
October 25 2010 post (highlights only): In April of 1995 I came down with infectious mononucleosis. I don’t remember much from that period, except that I must have had enough symptoms to go to the doctor. Luckily, I still have my Canadian test results, which means that I can provide a few numbers. In mid April, my AST was 196, which is about ten times the high end of normal; my ALT was 458, and my alkaline phosphatase was 250, which is also way above the normal range (high end: 115 U/L).
But the main point is that I tested positive for “Heterophile AB” (=infectious mononucleosis, which is caused by the Epstein Barr virus, or EBV).
I don’t remember how long it took me to recover…I probably spent at least a couple of weeks, possibly a full month, locked inside my cosy (=tiny, but adorable) one-room Victorian attic apartment on Huron Street in Toronto…together with my beloved cat, Keshé. A very kind university friend did all my shopping, including cat food, of course!
As for the EBV aftermath, all I recall is that I was exhausted all the time and for a long time…so much so that my above-mentioned friend bought me a couple of books (which I still have) on the Chronic Fatigue Syndrome. Eh. Oh, and one more thing: at the end of May 2005, while Keshé and I were visiting my parents in the States, I came down with a nasty urinary tract infection. I was in such pain that my parents drove me to the Cape Cod Hospital emergency room, where, after a battery of unnecessary tests (I mean, hello?, even I knew that it was a UTI), I was finally diagnosed and treated. Well, I guess it is not surprising that my immune system was quite low at that point…
April 8 2010 post (highlights only): Here is my question: does anyone else have a similar story? I mean, a viral infection preceding a MGUS, SMM or even MM diagnosis?
Here is an excerpt from an IMF document dating to 2005: Recently, researchers have proposed infection, particularly viral infection, as a causal or trigger factor. Several studies have linked multiple myeloma to HIV, hepatitis, herpes virus infections (especially herpes virus 8), Epstein Barr Virus (EBV), as well as new “stealth adapted” viruses such as mutated cytomegalovirus (CMV). The significance of these viruses with regard to multiple myeloma remains to be fully explored.
As I mentioned, I have already discussed this topic, which you can find under “Myeloma Triggers” (see: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mgus-to-mm-progression-sox2/myeloma-triggers/), but I would like to take another look at it…there might be a more recent study out there…interesting topic, yes…
My husband (age 37, previously in great health) is going through tests now to get a firm diagnosis for what started as a long term fever of unkown origin. He finally tested positive (after neg initial test) for Mono (which he already developed as a kid). he also tested positive for CMV. (I have read that sometimes CMV can cause a reactivation of mono?) I hoped we were at the end of our medical journey but they discovered monoclonal proteins (very low…not sure of much else..going back to the hematologist/oncologist next week). My crazy hope was that the cmv/mono might have been responsible for a transient monoclonal protein spike…but that hope is slowly fading.
Hello Margaret,
While doing extensive google research, your website keeps popping up! I THINK there is a connection between EBV, CMV and MGUS. Here is my brief story:
March 1973: DX~ Mono and strep throat..almost miss graduating form high school
1973-2005: periodic infections, respiratory, fatigue, etc. (NOTE: I worked for 5 yr 2000-2005 in a building where ceiling leaked and mold/fungus grew on the ceiling tiles..kept getting respiratory infections, sinusitis, severe allergic reactions to bug bites and air borne irritants like pollen..never had any allergy issues my whole life in the south..no issues..)
May 2005: I go on Personal Leave of Absence for work..so tired, sick and fatigued
May 2005-Feb 2006: go to 6 different Dr.s trying to figure out why I feel so sick & tired
Feb 2006: find a Dr. who runs tests for “insidious” viruses like Lyme Disease, CMV, EBV
Mar 2006: dx with Fbromyalgia & chronic Fatigue Syndrome (high titer levels of CMV, EBV (latent/reactivated..from possible mold exposure..)
May 2007: receive disability so now I am broke..but can rest when needed
2007-2010: annual monitoring of tests..CMV is now down but still higher than normal. FBV is still high hasn’t budged much either way for 4 years.
July 2011: go to Fibro Dr. fro annual tests..levels still high for CMV & EBV. Now having some neurological issues..he sends me to Neurologist.
Aug 2011: off to Neurologist for testing for possible M.S. MRI shows no lesions, but he ran blood tests…says go to an oncologist/hematologist b/c tests show high protein band..suspects M.M.
Sept 2011: go to UT Southwestern Med School & Hospital..big MM program. I am assigned a Dr. fresh from Mayo clinic who specializes in M.M.
Oct 2011: DX rec is MGUS. Dr. has all previous blood tests..sees the CMV/EBV and I even ask about the connection..he never really addresses it, but says anyone can have those things. I am guessing he just reads the blood tests for MGUS and MM and thats it. He does ask me about my low levels of Vit D..asked if I was Irish/Scottish (yes 50-75%..) he says that group has a hard time absorbing Vit D, asks about celiac disease.
Tells me to come back in 6 months for follow up MGUS blood work.
I come home and start to do more research..I’m finding all sorts of possible connections to Celiac Disease and MGUS..hmmmm. Have been a vegetarian for 2-4 years and don’t eat alot of wheat products..but when I do..I am painfuly aware….( making appt with gastro for tests..)
So in a nutshell….Mono, mold in the environment wreaks havoc on the immune system, high levels of CMV & EBV (which can escalate in non-Hodgkins Lymphoma) all over body pain, neurological/memory/cognitive issues..Fibromyalgai and CFIDS…now MGUS. Is is all related? yes..I think so!!!
Hi Susan,
All over body pain, brain fog, neuro stuff – all sounds like Gluten Intolerance. The docs will blood test you and tell you you don’t have Coeliac. The blood tests only work if you are advanced enough. Enterolab stool tests will detect it earlier if you need tests to believe it. Otherwise, you are likely to find you feel better by giving up gluten 100% – no-one forces you to eat it. Lots of gluten intolerant folk get told they have FM, and it is implicated in MM. BTW, if you are getting a colonoscopy, make sure they take biopsy samples and test for microscopic colitis – another gluten illness although the GIs rarely recognise that.
Hi Margret, I have been following your blogs, I also have Mgus, I was diagnosed 6 months ago in Feb 2011. About 5 years ago I had the EBV
I was seeing a oncologist/gynecologist I had lazier surgery, and was told
Every think was okay, 5 years later after thinking I had chronic fatigue, I had a lot of tests done to find out after seeing a hematologist/oncologist
I have Mgus! I asked the Drs if there was a connection? And they said no
It has been very interesting reading your articles.I will keep in touch
Thankyou for all your very informant information it all helps!
Godbless and thankyou once again
Cathyxxm
my mother has MM lesions from past 5 years plus now. Just before she started having pain in her lower Iliac hip bone on right side hip, she had a severe viral infection called “Chikkun Gunia” (it is acquired by a mosquito bite – mosquitos which breed in accumulated fresh/rain water in your nearby areas). I too feel she got MM primarily because of the viral infection…she has undergone several chemos and is again hospitalized today for one more round of chemo…I AM NOT SURE IF WE HAVE GIVEN ASHWAGANDHA to her, while she has been on heavy dietary supplements….
My wife had H-pylori for decades. Treated as an ulcer with all the usual meds of the day. That is, until our new doctor treated her for it in 1998. Can’t say that is why she has MM; but. Just sayin.
Here is something to think about. As part of her vitamin regimin, she started taking Melatonin in January. Her M-spike was stable at 1.3 since January to April. (began in 2011 at 3.4. On Rev/Dex from the beginning.)
I read on the cancer cure site about it’s potential harm to MM; but, I, also, read here about its beneficial aspects. Thought I’d let her give it a try but with close monitoring.
After reading a recent comment, it got me thinking so we discontinued taking it first of May.
Also, In April we started the Boccoli and Fenugreek sprouts.
Last weeks labs show a decrease in M-spike to .09. YEAH.
Anyway, Was it stopping the Melatonin or the addition of sprouts that helped move the needle after almost six months of being stable? So, we’ll have to see how it goes with her tests in August.
We haven’t started curcumin, yet. We’re saving the big guns until later. Seeing how some of the others work first. She has some bone pain. Other than that no other out of normal lab results. She also took prunes for about six months to help with her bone density. Stopped beginning of year. She had a DEXA scan and it was normal for her age. An accomplishment for having MM in my opinion. She has added K2-MK4 and MK7 to her supplements for bone density. We’ll get another DEXA in a year to see if she can get her bones beefed up.
All this is anecdotal. However, it seems to work for her.
THANKS Mike for sharing that. It has encouraged me
I am also gong to start taking the sprouts you mention, plus black cumin seed.
I am having an MRI in a few weeks, plus tests for thyroid for sevedral reasons, one is my high calicum level and the pains and a few little lumps in my legs.
So far no treatment taken, I did take curcumoin for 3 months, but stopped. Other than that I have taken nothing. Oh black cumin seeds for one month in cooking I was so encouraged by Margarest test reaults when all she had done was addd these seeds to her cooking.
I was also diagnosed with H-Pylori a few years ago.
Have not taken anything fo rit, but read recently Oregano Oil is a natural cure for it.
Hi,
hier is a study from 2004 EBV and MGUS:
http://www.ncbi.nlm.nih.gov/pubmed/15621122
Paula NZ
The H-Pylori is easy to treat. A few weeks with a couple antibiotics and an acid inhibitor and it’s gone. No more symptoms. This is one thing that I would definitley go with the prescription drug route. Beside the stomach problems, it may even cause heart problems. Just having MM puts the body in a compromised position. Having something extra to tax the body is not helpful.
For the high calcium, be sure to replenish your water. We deplete about 2.5 L or more per day. My wife, 110 lbs, drinks over a gallon of pure water a day. That is on top of the coffee and tea and other drinks she has a day. Her Ca levels are normal even with the Chemo drugs. Can’t hurt.
Mike
Hi Mike: I am a MM patient, and want to tell you my experience with trying to drink all the water my doctor said was important to drink. Not a big drinker of anything, it was very hard for me to increase my water intake. After several months, I finally got up to more than 3 quarts. I was so happy to be able to tell my doctor how well it was going at last.
I went in to meet with my nurse after having the usual number of tubes of blood drawn. We were talking, when the the results came up on her computer. She stopped, turned and looked at me. I said “what”? She ran to the door and yelled down the hall for somebody to bring chips. She then escorted me across the hall and put me in a treatment chair. She came running back to hook up an IV. Finally she told me what was going on. My sodium level was extremely low. This is serious and can be deadly, so it has to be treated accurately to raise the level; that is, it cannot come up too fast, but it needs to immediately be treated.
I was admitted to the hospital for three days. All the water I drank cause the depletion of my sodium. I now have to drink Gatorade, or other drinks that contain electrolytes.
It may just have been my body’s reaction, but I think it would not hurt to replace some of her water with electrolyte drinks. In fact, I think everyone who is aging should drink them because we do get depleted more easily.
I hope you don’t mind this message – I have heightened concern because of my experience.
All best wishes, Barbara
All very good info Mike thank you. I drink NO water and my eGRF has been going lower, to 63.
Margaret,
Herpes virus are implicated in several cancers. I was diagnosed with Reed Sternberg Hodgkins Lymphoma at the age of 27. This is a B cell lymphoma associated with EBV. This followed a bout of fatigue just prior to graduation from college and a recurrance of fatigue when burning the candle at both ends early in my career. I have no doubt that herpes virus especially EBV is causative in hematologic/ immune cancers .
Regrettably, the rads used to cure my Hodgkins have caused 2 breast cancers. I have stage 4 triple negative breast cancer now but I am grateful to have had a 40 year cure from Hodgkins. After much research on TNBC and curcumin I am presently doing curcumin 8 Gms daily with quercetin and ECGC. So far, no further progression!
Thank you, Margaret, your blog is great. I was diagnosed with MM in Jan 2015 and had a stem cell transplant in 2016. I am doing OK but as a healer since 14 I know the incurable can be cured. I have witnessed it. I have always felt my MM was caused by the herpes virus as I have suffered with cold sores for most of my life. I am as of today going to try an oregano oil protocol to kill the virus. I will try this for six months and will let people know what happens. My numbers are OK after the SCT and I feel great but lambda light chain is already creeping up so I thought it was about time I followed my instincts re the underlying cause – and David Edwards kindly sent me to your blog. Thank you’
Hello, Margaret,
I have MGUS and I am from Romania . I KNOW because i felt that MGUS is because I had cold- virus when I visited USA in the summer of 2014. I was very sick and then, after two months I had a very bad condition, with dizziness, numbness, tingling, fatigue, pain, and than, after a few tests: Gammaglobulin 18,6 and IGG 1730. I had 6-7% plasma cells in my bone marrow. I am sure that virus causes my MGUS.
This is a very interesting blog. I came upon it because I was searching if mono could have caused my MGUS.
I was hospitalized in the ’70s for mono at the age of 16. At the time, I was not conscience for two days. The last thing I remembered was being on a gurney being rushed down a hall and a doctor probing a stick in my mouth when I immediately gagged and all this creamy phlegm started flying out of my mouth and that was the last thing I remembered until I woke up 2 days later. I was in what they called an oxygen tent. When I woke up there was a heavy plastic wrapped around my upper bed to the waist and something hissing.
When I left the hospital, they told me I had to continue resting. They told me I could go to school but that was it. After 2 weeks, I had enough and went about a more fun life. I’ll be dammed, about 2 weeks later I got seriously ill with the same symptoms that caused my mono, did more resting and then it went away for good I thought.
At 19 years of age, I woke up to the alarm ringing across the room and got up to turn it off. Before I could turn the alarm off, I was suddenly on the floor wondering what the hell just happened. I had no pain in my legs or any indication that they would suddenly not hold me up. I lay there thinking well, you have to do something, so I started with my right leg to see if I could get it to me knee and then up. Both legs were back to normal. I was raised in a large family where no one ran to the dr. for every little thing so I didn’t go to the dr. I was okay now so no problem.
Now we forward to April 3, 1998. I had back surgery due to a herniated disk. After walking around in pain for 6 weeks, not being able to bend my left leg and every time my foot hit the floor was indescribable pain. I start crying uncontrollably because I never told anyone how much pain I was really in. I saw the surgeon on Monday and he said you need surgery immediately, how does Friday sound? What should have been a 45 minute surgery lasted 3 hours. He had to surgically cut around and manipulate my sciatic nerve to remove everything there that was causing the pain. It was indeed a mess. I was released to go home the next day. What should have been a 3 day recovery was 3 months and then head back to work part-time until I was fully recovered.
Before I was fully recovered to go back to work, if that don’t beat it all, I developed a blood clot after my back surgery and was back in the hospital for the blood clot. I was released from the hospital for this after a week stay on April 11, 1998. I had to have someone drive me to the hospital 2 days a week to check if my Coumadin was right.
Moving forward again but still in 1998, after blood clot recovery my left foot feels numb off and on. My sister tells me not to fool around and make an appointment to see the doctor. This was on a Thursday and the appointment was scheduled for Monday. Sunday I had to go to the emergency room because my left leg is numb to the waist and the right leg is numb up to the knee. I was diagnosed with ADEM (acute disseminated encephalomyelitis) meaning an acute disease of the brain and spinal cord with variable symptoms that is thought to be an allergic or immune response following infectious disease or vaccination). I had to have complete bed rest for 3 weeks followed by one month of no exercising or vigorous activity except easy, relaxing walks.
When my 3 week stint was up of resting around, I was told by the neurologist that they knew I had an autoimmune disease or diseases and could not be correctly diagnosed until I have another occurrence. At this time, I was fully convinced in my mind that nothing could happen anymore because I followed the doctor’s orders and lay on the sofa watching the television all day.
The next year my left arm went numb and then, oh boy, I get the diagnosis. I have MS and start daily shots in January of 2001. When given the diagnosis of MS, I sobbed uncontrollably and wanted someone to just shoot me.
On May 21, 2009, I go for my 6 month check up with the neurologist for my MS. She says, Oh my, you re down to 93 lbs. I say really, I don’t have a scale at home and my pants didn’t fit so I just went and bought pants that fit me. I felt fine. She said you have no subcutaneous fat and let’s check if I put you on a new medication. Well, she did, and one of the side effects is loss of appetite. She said I’m going to have to take you off of this and prescribe something else. I said, no way, this medicine is helping me. I’ll gain the weight back. She says okay, but on your way out, I want you to have a blood test drawn. She wants to check my thyroid.
I get a call from my Neurologist’s office saying we made an appointment for you with the Hematology Department for you Thursday at 9 AM followed with a stern warning: “I highly suggest you keep it.”
Kept my appointment and am told I need a complete bone scan of my body and given a paper bag with all the paraphernalia to collect my urine for an entire week.
Okay, back to the Hematology Department a week later where a nurse takes my husband and me into a room and the proceeds to pull out a binder explaining cancer resources and spiritual assistants. She leaves us and says the dr. will be with you shortly. Wow! We don’t even know what I have yet! I was numb.
The doctor told me I have MGUS. I don’t understand what he is saying because he is not American and even if I could understand I have MS and my comprehensive skills are not functioning at this point at all after given the binder for cancer. I had to put him way out of his way and have him draw pictures of what he was explaining.
I still don’t understand this disease at all except for the fact it could turn into cancer.
And I’m confused? Do I have cancer since we already know it could blow up at any time or am I precancerous or am I really cancer free until it changes to cancer?