[pappygal]

Diagnosed 2 weeks ago with MGUS

by pappygal on Thu Oct 17, 2013 12:36 pm

I am 57 year old diagnosed with MGUS, Anemia B12,and Dermatitis by Oncologist 2 weeks ago my primary doc referred me to.

History: Misdiagnosed as Fibromyalgia and Psorasis by Maine doctors 2008-2009 for Right shoulder,axilla,neck pain that radiated to bicep and thumb and forefinger.Other diagnosis in past : Neuropathy,carpal tunnel, OA pain. Surgeries: 2009, Anterior Cervial Discotomy C3,4,5 cadevaer disc,2010 Epiglottis Tumor with over 80% epiglottis removed as CT scan indicated Squamous cell but pathology indicated benign,2011 Axilla Lymph biopsy for enlarged lymph nodes palpative and noted on CT or MRI no tissue obtained as each attempt lymph disentegrated also scalp lesions that had not healed for over 6 months and quarter size deep bleeding and scabbing pathology "Necrotizing Folliculitis" and Staph Aureus.

We bought a second home in due to the cold affecting my extremeties due to Livedo that started with my right shoulder pain and was limited only to the inside of both knees, Oh yes I was accused of using a heating pad to cause the Livedo!! The Livedo is now generaized and getting a darker purple/red as the years go one, my worry is organ damage but my concerns fall on deaf ears.

The first year we came to Florida I was seen by pain managment for the right upper extremity pain which perplexed the doctors due to the Livedo and the pain. I found a Orthopedic surgeon that diagnosed my shoulder after a Xray as a SLAP injury and said I must of fell or lifted heavy weights which neither was true. He performed a SLAP 2 repair,Bankart and extensive debredment. I was suppose to be discharged that day but was admitted due to my blood pressure dropped to a low level so I was kept overnight for observation. The surgeon told my husband that the humerus (ball)was detached from the glenoid fossa (socket) and he attached 4 metal anchors to hold it all together.

I want to add that a Dermatologist I went to in Florida for the recurring scalp lesions that had returned since my Maine biopsy found IgA 78 but said that it was nothing as I never had a stroke or heart attack so I could dimiss this. I was concerned about surgery and blood clots so I did tell my Orthopedic surgeon which the Dermatologist could not find the labs results and told him "I must of given the original to the patient"

I finally found a caring competent primary care doc that sees my concerns as real and not a figment of my imagination and due to the extent of my long standing symptoms which new ones seem to appear.

I went to the Oncologist hoping he would find out why after all these surgeries I am no better and still in pain with generalized Livedo that seems to be darker, weakness, poor appetite and weight lose of over 20 lbs, scalp lesions that refuse to heal even after 3 biopsies and real no diagnosis but lesions have left my scalp with deep scars, and I know I am probably forgetting something as this has affected my ability to focus.

Here are my labs which I am told are nothing:

IgA 75, Lymph% 45.3,no mono band observed, PTH primary: High, Secondary: Normal or Low, Tertiary: High, Non Parathroid: Hypercalcium High, Calcium: 9.9. Immunoglobin A: 75, Lipids: Total LDL-C Direct 158, Total VLDL-C Direct 37, SUM TOTAL CHOLEST 236, Triglcer-Direct 192, Total Non HDL-C 195, Total APOB100 CALC 124, IDL-C26, Real LDL-C 127, SumTotal LDL-C 158 , Pattern A large Buoyant LOL , Remnant LIPO 45, Consider Metabolic syndrome: NO, SUB Class HDL-2 9 VLDL-3 19.and Glucose 107, Vitamin D 18, Vitamin D 25 OH D3 18 and D2 <4, B12 277.

Also negative for AIDs, Hepatitis B and C, and MRSA.

The Oncologist is now referring me to Hematolgy at Shands in Gainsville, FL and wants to see me again in 1 month.

I have not had any bone scans, or any other tests besides what the abnormal levels included in this message. I have been sick for so long barely able to get out of bed and the pain makes my quality of life poor even though I am being treated thru a pain management, the breakthru pain and the years of trying to get well have taken a toll on me and my marriage of 32 years.

I feel this MGUS diagnosis is just like the Fibromyalgia diagnosis, a catch all when they do not what is wrong, they do not want to further investigate or consult with other professionals that maybe could suggest further testing, I have lost all hope with the medical profession and everything I believed as a nurse forced to go on disability due to inadequate care.

What would you suggest?

Sincerely,

Cathy

[Dr. Edward Libby]

Re: Diagnosed 2 weeks ago with MGUS

by Dr. Edward Libby on Mon Oct 21, 2013 12:25 pm

Hello Cathy,

I am sorry to hear that you are suffering so much. It is very difficult when a specific diagnosis cannot be made that would explain multiple symptoms. As far as the MGUS goes, however, it is not a "wastebasket term." There are very specific laboratory tests that are used for this diagnosis. The laboratory tests really have no subjectivity to them.

One thing is certain here, and that is that MGUS has no bearing on a patient's health. MGUS is quite common (3% of the general population over the age of 50). For most people diagnosed with the disease, MGUS does not progress to multiple myeloma during their lifetime.

I think it is a good idea for you to be seen at an academic medical center to look again at your blood tests and to help determine if there is a diagnosis that is not being considered. I hope that you find some answers (and treatments) to improve your health problems.

Thank you for sharing your questions with the Beacon and its readers.

[Rosie+George]

Re: Diagnosed 2 weeks ago with MGUS

by Rosie+George on Fri Oct 25, 2013 3:20 pm

Have you been tested for ehlers-danos syndrome?

Do some research on this to see if it might be something worth investigating

[pappygal]

Re: Diagnosed 2 weeks ago with MGUS

by pappygal on Sat Nov 09, 2013 4:51 pm

Thank you for your replies,as you can probably tell by my long rattled post that I was becoming disappointed but my Oncologist referred me to UF Shands due to the protein in my blood and I was seen by Bone Marrow Transplant Program and Myeloma specialist. I was not all that impressed with the visit and the comments he made about pain meds making my pain perception distorted and Dexedrine causing excessive sweating which I remarked that I have taken my self off pain meds due to being fed up with the monthly doctors trip and then finding a pharmacy since moving to Florida who will fill opiates due to "pill mills" and the patients that abuse medications making patients that need pain management a circus.
I do not know about other pain patients but I am so disabled by what ever is going on with me and the poor care and misdiagnosed issues that I stopped all opiates for months and tried to control pain with Motrin which sadly did nothing especially for the shortness of breath and palpitations that seem to pain related so I told this specialist it was not true in my case but that I also felt as not enough testing was being done in my situation such as when I returned after my detached shoulder surgery and asked the orthopedic surgeon why I am still having the same pain as presurgery . I was amazed he did not order a simple xray but instead he said I must have RSD and "You are lucky as some people loss toes" as he referring also to my generalized Livedo that he could see worsened. I also commented on my Dexedrine use and sweating issues that he felt were Dexedrine related, 'I have been taking Dexedrine and Desoxyn for decades for Narcolepsy and never sweat like this"
He said I was sent there to rule out multiple myeloma and he did do a urine protein test and drew other labs like CBC and ?? he mentioned "Bence Jones Protein. and checked my lymph nodes. Said I would hear back if abnormal test or if urine test showed UTI as I thought I had another UTI due to burning and smell .
About the Ehlers Dano comment I do not seem to have those symptoms?/ strechy skin?
I see my Oncologist Nov 25th and I am going to ask for bone testing especially concerning my scalp lesions that have left my scalp deeply scarred and the stabbing scalp pains and infection from my 3rd scalp biopsy..
I want to add: I had a burning sensation on the left shoulder clavicle region last night and felt that area and noticed a hard lump, maybe dime or quarter size that does not move and feels like it is attached to clavicle..
Should I wait til 25th to have Oncologist look it or maybe call my primary provider..
I really appreciate the professional advice..... I only wish I had specialist who are empathetic and knowledgable and not presumptive..
Cathy

[pappygal]

Bence Jones test or new protein urine test?

by pappygal on Sat Nov 09, 2013 5:11 pm

I was seen by a myeloma specialist as I was referred by my Oncologist who diagnosed MGUS due to protein in my blood and I was being sent to him to rule out Myeloma. He mentioned Bence Jones Proteins and that he was testing for proteins in my urine and also I mentioned I thought I had another UTI which I never had problems Til this past year as I complained of burning while urinating and off odor. I thought Bence Jones UA was a 24 hour urine sample test.. I am sure there are newer test cause he said something about Bence Jones being a old test and the way he spoke of it not used as much anymore.

Any comments on this and what test would that be?

Thank you, Cathy

[pappygal]

Re: Diagnosed 2 weeks ago with MGUS

by pappygal on Mon Apr 07, 2014 3:17 pm

Update: After being seen at University of Florida Shands and the Mayo Clinic in Florida with a follow up with my oncologist which he stated all blood work was "great".

Mayo did blood test ordered by the primary care person I saw there and then the rheumatologist did his workup of blood test which were negative and the 3rd time I have been seen by this speciality and all labs were negative, then Mayo sent me to a Pain Management and the young female I saw recommended 3 weeks pain rehab to get me "gainfully employed" and I was to get a motel room for those 3 weeks at $3000-5000 stay and attend outpatient pain services in learning to cope with pain without opiates and get back to work, then she said "I am going to bring in another pain doctor to discuss my recommendations"

A male doctor came in and he contradicted everything she said "this should of not been offered until we investigate her pain and if she is to be enrolled in this program that would be a long time down the road" He asked if I had any records, I stated I brought all surgery reports and disc of images at 2 prior visits to Mayo as I thought they would want copies as the referring MD sent nothing but the 2 docs refused the records.

Mayo was a 2 1/2 drive one way and after that pain appointment I told my husband "I am done".
I am left with generalized livedo with a 18 month eroding scalp lesion that has left an area bald maybe from the 3 biopsy or maybe from necrotizing folliculitis and infections as these are always in the same area of scalp the erosion left a big dip and I wonder if my skull was affected especially since the non healing nature.

I know my beta 2 glycoprotein IgA has been elevated for well over a year. My right shoulder which was detached ball and socket from ? not trauma related but it is documented from MVA?? The livedo I am told by medical professionals is "Idiopathic" which I strongly disagree as the livedo came with my right axilla lump and right shoulder pain, the axilla lymph enlarged documented via CT scan and attempted biopsy in Maine but Lymph disintegrated and strangely I have 2 light colored blackish bruises in that axilla region which no one can explain. And the shoulder which I found was detached after coming to FL . Another strange symptom I have is orange colored sweat ? staining upper torso and when wiping with white wash cloth the cloth is orange stained.

I have lost all faith with the medical community as I realize I have "complex" symptoms or disease but this is from neglect and incompetence from doctors in Maine as it is much easier to give a psych diagnosis than to use their professional knowledge and "do no harm" .

I do not know what else I can do so I cancelled all Mayo appointments as how are they going to be able to help me without my surgical reports and medical history and Listen to the Patient versus "Idiopathic" . I feel the medical professionals need to revamp the attitudes about female patients and learn to listen more.

[8oclockcoffee]

Re: Diagnosed 2 weeks ago with MGUS

by 8oclockcoffee on Sun Sep 21, 2014 9:52 am

Hi Pappygal,

I was searching for MGUS and scalp lesions and came across your posts. Have you had any luck with a diagnosis yet? I was diagnosed with MGUS a year ago and the skin problems I am encountering are driving me crazy.

Have you had any luck with doctors?

Brenda