Hello All, my name is Marsha Bell. In 2005, and unbeknownst to me, my life as I once knew it was about to change forever.
I’ve been diagnosed with the following rare, incurable muscle degenerative condition named:
Nemaline Myopathy (NM) associated with Monoclonal Gammopathy of undetermined significance (MGUS)
In addition, I have a lung disorder named Interstitial Lung Disease (ILD). Doctors are still trying to determine the specific type of ILD so it can be properly treated.
Due to the rarity of this condition, most doctors aren’t aware of it; therefore, getting a diagnosis of these conditions takes months even years. The average time to get a diagnosis is three to five years.
It took me five years to get a diagnosis and different parts of my proximal muscles were getting weak every year. It started with my eyes twitching and then my neck became weak with a lot of pain. Next year my shoulder started hurting and I learned I have torn rotator cuffs and weakness in both shoulders. Next year my lower back started hurting, which I discovered later was hip degeneration so I had to have a right hip replacement. But prior to the hip replacement, I started experiencing muscle weakness in my thighs, this limited my ability to stand from a seated position and to walk up steps. I was also having difficulty swallowing. When you’re weak, your body feels very heavy.
When I initially started experiencing the symptoms I was okay emotionally. I figured whatever was going on would be cured soon. Unfortunately, I sought out orthopedic doctors for help. They had no clue what was going on. All they did was treat me with steroid injections. This helped but only temporarily. I kept going back, but all I ever received from them was this “deer in the headlights” type of look. One ortho doctor finally suggested I see a rheumatologist.
This referral was the impetus to my receiving a diagnosis. I went to see the rheumatologist and she ran all kinds of tests and lab work. She suspected I either had Lupus, fibromyalgia or rheumatoid arthritis. The tests and lab results did not confirm her suspicion, so she referred me to a neurologist. Here we are on the right path now.
Next doctor visit would be with a neurologist. Here we are close to a diagnosis! The frustration is building! I need a diagnosis now. I’ve been falling a lot. It was affecting my ability to work. The pain was real and the lack of medical help was real. I go to the neurologist and I’m finally given an EMG. This test identified muscle wasting and weakness. I went to at least three neurologists to get a diagnosis and neither was able to give me one!
Now, I’m like Lord why? What is going on with my body? I had gotten to the point I couldn’t get in and out of bed! I could hardly raise my head, so I had to wear a neck brace! I could not raise my arms above my head, I could not stand from a seated position, I could not drive and I could not walk up steps and I’m having difficulty swallowing!
The last neurologist I saw finally referred me to a neuromuscular specialist. My husband and I are thinking we are close now to receiving a diagnosis. It’s 2010. My symptoms began in 2005. Fortunately, based on my symptoms, the specialist ordered me to have a muscle biopsy. Finally, a procedure that should give me answers! In May 2010, I had the muscle biopsy. Also in 2010, I had to stop working! I could no longer perform my duties as a Property Accounting Manager. I am a Certified Public Accountant and was advancing in my career; nevertheless, God had other plans for me! The doctor sent my biopsied muscle tissue out for review and it wasn’t until October 2010 he would receive my results.
In the meantime, he diagnosed me with Polymyositis and put me on 80 mgs of Prednisone and I was told I would get worse before I get better. That was so true! I was falling everywhere! I was also in school trying to complete a graduate course that I had to withdraw from but after the withdrawal deadline date. Since I couldn’t finish due to health, the instructor did not agree to give me an “I” for incomplete. He agreed to let me take Final Exam later, but I never got well enough by his due date. He gave me an “F.” Since I would not accept an F, I persistently contacted the school administration to get my grade changed. The professor was so mean and said some unscrupulous things in his emails to me, which I forwarded to the Dean of the business school. Thankfully my grade was changed to a Medical withdrawal. Because I had to withdraw, my employer never reimbursed me. But that’s okay. I was just glad my grade was changed.
Anyway, the neuromuscular doctor had a very bad bedside manner so, in 2011, I went to see another neuromuscular specialist named Dr. Ericka Simpson. I had contacted the Muscular Dystrophy Association and they gave me three names and hers was the first on the list. I contacted her office and an appointment was made for January 3, 2011. She immediately admitted me to the hospital that month and ran all kind of test and treated me with IVIG. I was released from the hospital in February and was transferred to an inpatient rehab hospital. In March 2011, I met with Dr. Simpson and FINALLY received a diagnosis. I finally had a name for all the symptoms! That was a wonderful feeling!
Now on to treatment… my treatment plan consisted of an intravenous immunoglobulin called IVIG; steroids, Prednisone; an immunosuppressant named CellCept; pain medication named Norco; and other vitamins. Every month I was sick with flu-like and migraine symptoms for a week after the IVIG treatment, I was in constant pain. After five years I began experiencing a burning pain from the CellCept. I went to see a pain management specialist in July 2014, who put me on the Fentanyl pain patch. I was able to get it filled with brand medication! Oh wow, I’m now feeling better! Since I was feeling better, I decided to pursue working again. I notified the long-term disability carrier. I made this decision amid friends and family telling me to stay off because I may not be able to do the work. I was so sick of being at home and walls closing in, I went back not as a manager, but as a senior accountant. Things were going well until January 2015. That month my medical insurance carrier UHC would no longer allow me to get the brand pain patches and I had to begin using the generic patches. My excruciating pain level resumed and my ability to work or do anything began to dissipate.
The pain after my IVIG treatment resumed and my pain level increased. The generic patches were not as effective as the brand Duragesic Fentanyl pain patches! Since my time off from work was during the month-end accounting close, I had to stop working. I had returned to work November 4, 2014, and I had to stop working December 28, 2015. In 2016, my health declined and it was during this year I received another diagnosis of Myasthenia Gravis and was told I have ILD. Now I’ve been told I had Polymyositis, Nemaline Myopathy associated with MGUS and most recently, Myasthenia Gravis. To address the flu-like and migraine symptoms after IVIG, the home infusion company decreased the infusion rate to 75 or less. This made a big difference! I no longer have those symptoms! The doctor wasn’t aware of this and she had me to undergo plasmapheresis. My condition truly worsened after this! To confirm what I have, my husband and I went to the Mayo Clinic in Rochester, Minnesota this year!
I do have Nemaline Myopathy associated with MGUS, ILD, Anemia and it’s suspected I do have a Myositis disorder but steroids are masking the lab results to confirm Myositis, but ILD is normally associated with Myositis.
I truly have a passion and desire to prevent others from going through what I’ve gone through! I want others who may be experiencing these symptoms to get to the right type of doctor such as internal medicine PCP to serve as your health care coordinator, a rheumatologist or more specifically a neurologist! A rheumatologist can diagnose myositis. Also make certain the following procedures are done: EMG and a muscle biopsy and make certain your inflammatory markers and muscle enzyme levels are checked by lab work. With this knowledge, a patient’s time to get a diagnosis should decrease from 3 – 5 years to less than a year. This will allow immediate diagnosis and treatment! If caught early its effect to your muscles could be minimal and possibly cured quickly although according to literature there is no cure.
I thank God for where he’s brought me from to where I am today! Here in 2017, my condition is progressing because I’m not able to get IVIG. I’m not able to get IVIG since I now have blood clots. I did not know IVIG can cause blood clots. So I’m now on blood thinners. My current medication includes Cyclophosphamide (chemo/immunosuppressant), Prednisone and Lovenox injections. In addition, I now have to walk with a walker, but my emotional and spiritual state of mind is so much better! God has been good to me and I give him all the glory!
I have accepted my health status and new direction in life. My focus is patient advocacy – others and mine! I’m still trying to get better, so I have lots of doctor appointments.
Marsha BellTags: ivig myositis