[Amiliz]

New from Arizona - have MGUS

by Amiliz on Sun Aug 10, 2014 9:27 pm

Here is my story. For the past couple of decades I have gone to doctors and told them how I am so tired all the time and how I am so achy everywhere. They always ordered a blood test, making sure to test the thyroid. Tests always come back normal, or maybe show I need more vitamin D and that would be the end of it.

I would periodically try to get on an exercise program, both because I was getting so large and because everyone claims that exercise gives you more energy. After a few weeks of this, and getting more tired, I would give up. Several years ago, I joined Curves and that worked for awhile, during the 4th year even that got to be too hard, seemed like it should be getting easier to get around that circuit, not harder. So when the membership ran out for the 4th year, I stopped that.

Last summer I decided to have my memory tested. I turned 50, my 82 year old mother has dementia / Alzheimer's, and my middle age memory problems seemed to be getting worse. The memory also seemed like I had more problems than my friends that are 15 years older. I wanted to at least get a baseline set so that when I get older, if I do start having memory deterioration, they can have a starting point to measure against.

So I go to a neurologist, she runs the whole battery of tests. Says I have no memory deterioration, they notice that often times the normal middle aged memory glitches bother "very bright people" the most. However, they did note that my white blood cell count was slightly high in my last blood test, indicating general, non-specific inflammation, so I should follow up with my primary care physician.

The PCP orders another blood test, it comes back normal except the C Reactive Protein is a bit high, also indicating non-specific inflammation. So another blood test is ordered and it show an elevated SED rate. PCP says I need to go to a rheumatologist.

Four months later, a week before my appointment with the Rheumatologist, I have a very strange event. I am reading my book before bed and slowly my hands start tingling. In a few minutes it progresses to a burning / prickly / itchy pain. Soon it burns and hurts so much I can't stand it, so I go get my sister, Maggie. I tell her what is happening, I wonder if it is an allergic reaction to a prescription anti-inflammatory pain med the neurologist prescribed for my occipital neuralgia headaches. It doesn't seem likely, as I have taken this medicine at least twice before with no reaction at all. Also, the burning/itchy pain is spreading everywhere.

We decide I should take a Benadryl any way, it might help. Meanwhile as it all gets worse, I am scratching and rubbing myself. Maggie tells me to stop scratching as it will only make it worse. I try to go lay down and can't stand it. The pain is the worst in my hands and my belly, I keep scratching my belly until I notice I have huge red scratch lines all over it and they are almost bleeding.

I go to the computer to try to look up what it could be and what might help, don't really find anything helpful, but I start rubbing my hands as hard as I can against the edge of the desk. I realize I am going to hurt myself too much so I go back and get Maggie again. She lays on the bed with me, rubbing my back and holding my arms from scratching at myself. Now the inside of my mouth is burning and itching and even my teeth hurt. Eventually it starts to go away, about 2 hours after it starts. To date no one can tell me what that might have been. But, rheumatologist runs another blood test.

This blood test still shows an elevated C Reactive Protein. He orders another blood test for me. After recovering from a cold or flu that included full blown laryngitis, and lasted 3 weeks, I get that blood test.

Then, during the three and a half months I am waiting for my follow up appointment, I have a month of daily occipital neuralgia headaches. I keep telling everyone how it feels like someone hit me in the head with a baseball bat, on the right side on the top near the front. About 3 weeks into this, I have day of such excruciating pain, I can't even call a doctor, let alone get in a car and go see one. The next day I call my PCP and they have me come right in. She notices that the pupil of my right eye does not dilate.

I go to an ophthalmologist who diagnoses Horner's Syndrome and orders a CT of the chest, an MRA of the head and neck and an MRI of the brain. Says Horner's Syndrome is caused by a lesion along the parasympathetic nervous system to the face and neck and these tests should find it. Tests don't show anything.

I go to my rheumatologist follow up. He diagnoses me with fibromyalgia and says the blood work was all in the normal range except for one protein. Says I have monoclonal gammopathy of undetermined significance [MGUS]. Says people with this protein tend to develop tumors later on, so I need to see a hematologist about it sometime this year.

I look up monoclonal gammopathy of undetermined significance online. It doesn't seem so scary, after all most people never develop past this stage, and everything else that looked like it was going to be scary for me has turned out to be nothing of significance. My PCP recommends a hematologist at the Ironwood Cancer and Research Center, she orders a blood test and a 24 hr urine test. After everything I read, I expect to go to the follow up appointment and hear her say that it is just a slight elevation and I will need to follow up in another six months.

Well, she did say it was just a slight elevation, but she wanted me to have a bone marrow biopsy. I was totally unprepared to hear that but ok. She says that if I have the BMB, it will tell exactly the level of the protein and she will be able to confirm that it is just MGUS. Also, this way, I won't have to do the same blood and urine tests I just did every six months.

I am not sure I believe her in this, seems like even if the BMB says MGUS, from what I have read, you still have to keep a close eye on it. The fiscal year of the non-profit I work for had just ended on June 30th, so I tell them the test has to wait until August. I have to close the books and prepare for the auditors and we are small and there are only 2 of us to do this level of accounting and we always barely make it in time.

Anyway last Thursday, a full 14 months after the neurologist found the slight elevation in my white blood cell count, I had the BMB. Now I just have to wait until Friday the 15th to hear the results. The waiting is the tough part. I just want to know.

Sorry for the very long post, and if you got this far, thanks for reading it.

Kindest regards, Amy

[Toni]

Re: New from Arizona - have MGUS

by Toni on Sun Aug 10, 2014 10:44 pm

Amy,

Welcome to the forum. I understand many of your concerns. It's frustrating to not feel fully functional and yet not get any answers as to why. And the waiting is the hardest part.

It also sounds like you may have a variety of medical / health issues that may have not been sorted out yet.

I am 51 years old and just recently diagnoses as MGUS as well. I just had a bone marrow biopsy so should find out if it's MGUS or SMM (smoldering myeloma). I have no reason to believe it's anything but MGUS, however, like you I have health issues. I was diagnosed with fibromyalgia years ago and as a consequence, it is very difficult to "exercise". I've been told by physical therapists to literally take just 3 minutes of mild stretching a few times a day. I used to do aerobics jogs, but it's quite different now.

At any rate, I wish you the best and I hope you have good outcomes from these tests.

What was your M-spike?

All the best, Toni

[Amiliz]

Re: New from Arizona - have MGUS

by Amiliz on Mon Aug 11, 2014 12:06 am

Hi Toni,

When are you supposed to get your results?

I have not actually been told my M-spike but I did find in the results from one of the early tests on the docs online site where it said 0.7. I don't really understand what that means. I am going to have to get more details on Friday when I see my doc.

I have been doing some yoga and meditation and riding my recumbent exercise some.

Best wishes to you too, Amy

[Amiliz]

Re: New from Arizona - have MGUS

by Amiliz on Fri Aug 15, 2014 9:27 pm

Good news from the BMB, plasma cells < 10%.

[Toni]

Re: New from Arizona - have MGUS

by Toni on Fri Aug 15, 2014 9:53 pm

Very nice!