[swmorgan]

Peripheral neuropathy prior to myeloma diagnosis?

by swmorgan on Fri Jul 22, 2016 10:41 pm

Several years ago I developed idiopathic peripheral neuropathy (IPN). I originally thought the neuropathy was due to tight running shoes causing my feel to tingle and burn while running and after runs. I was diagnosed with IPN by a neurologist.

Of course, the reason was unknown, so I was put through the ringer to try and find the cause. Nothing showed up on an MRI of my brain (done to check for multiple sclerosis). B12 was low, so I was told to take B12 supplements.

All the while I was having terrible pain in my hips, like hot rods trying to go straight through my bones. This went on for almost three years. I have a high tolerance to pain, so I have "lived" with it and have popped Aleve (naproxen) and ibuprofen almost everyday. Nights have been the worst and I realized that if I sleep in the fetal position that it was worse. I have woken up screaming in pain. My husband is deaf in one ear – thank goodness for him. LOL!

My neurologist retired and I wasn't comfortable continuing with him due to distance, so I changed neurologists. She did her own nerve conductive study and did an MRI of the spine and a load of blood work! The NCS revealed a mild progressive and the MRI was fine except for a small tumor on the base of my tailbone which would only cause nerves to my bladder, etc to not function properly. They all work!

Long story short, all the blood work came back and she is sending me to a myeloma specialist at UAMS in Little Rock for further testing for multiple myeloma.

What?!

I'm perfectly healthy except for this pain, some fatigue, anemia, and low red blood cell count, right? I have a good appetite and eat healthy. I'm not overweight, I exercise regularly and live a healthy lifestyle.

Blood work results are like a different language to me. I know nothing medical. I've never really been sick my whole 54 years of life. But, the last three years I have experienced more pain and general fatigue than I ever had. I am 54 so things are suppose to slow down and hurt, right?

IgM was out of range high and my IgG was out range low with an M spike of 0.2. In my mind that's pretty low if the normal is 0.

So this aggravating peripheral neuropathy has pretty much led me down a path that I'm not sure I would have pursued on my own unless I just couldn't get out of bed or broke something.
Evaluation testing starts in 10 days with MRI's and a bone marrow biopsy. Ouch!

I don't really have a question other than if anyone else developed peripheral neuropathy prior to any multiple myeloma diagnosis?

[DallasGG]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by DallasGG on Fri Jul 22, 2016 11:47 pm

I had some peripheral neuropathy prior to my myeloma diagnosis. It consisted of some numbness in my feet and I noticed it mostly when I went for bike rides. I thought it was just a side effect from long bike rides, but there was a time a year or two earlier when I didn't have the numbness in my feet on bike rides. Also, it seemed to be getting worse.

[Multibilly]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by Multibilly on Sat Jul 23, 2016 7:40 am

Hi Swmorgan,

Sorry to hear about your situation. IgM-related plasma cell disorders are a bit trickier than other isotpypes (IgG, IgA, etc) to diagnose and don't necessarily suggest multiple myeloma. In fact, IgM multiple myeloma is quite rare, so UAMS will undoubtedly be looking for other possible diagnoses. The good news is that you are at UAMS and they have many top plasma cell disorder experts on their staff and have an amazing reputation in the field.

I would suggest you read through this article to understand what UAMS will be considering as they narrow down your diagnosis.

https://myelomabeacon.org/forum/smoldering-multiple-myeloma-igm-kappa-t5523-10.html#p40420

Good luck and let us know how your tests turn out.

[Wobbles]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by Wobbles on Sun Jul 24, 2016 5:45 pm

I started to develop peripheral neuropathy (the numbing type) about a year before diagnosis. It was also concurrent with a rise in my monoclonal proteins. Oddly, I also had foamy urine, which I now understand was also a signal that I had more proteins in my system. When my monoclonal protein level showed an exponential rise in April 2016, I decided to have another bone marrow biopsy. That showed that I had 50% abnormal plasma cells in my marrow. Voila! I was diagnosed with myeloma.

I suspect my diagnosis pattern is not uncommon. It seems to me that myeloma is affecting our health in many ways. It will leave telltale signs of its presence. It is up to the docs to weed through symptoms and figure out what diagnostic tests to perform. Good detective work, if you ask me.

Of course, many of the symptoms we patients develop often have many explanations. That is a complication for the doctors.

I hope your good health returns.

Joseph

[swmorgan]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by swmorgan on Mon Jan 30, 2017 12:46 pm

So sorry I have not responded to the post. I was diagnosed with IgM MGUS by my doctor at UAMS. In the midst of all the testing (x-rays, CT/PET scans), a mass was found in my lung and a biopsy was taken. No cancer, thank God. It appears to be a granuloma that is active and about 2.8 cm.

I've seen a pulmonologist and infectious disease doctor for the lung issue and have had a couple of follow-ups to see if there is any change and there has not been. I'm having another PET scan next week to determine if the infection is still active. I would never known I have it since it has caused no issues for me. Of course, it always throws up red flags.

However, I have fractured my foot that I have the peripheral neuropathy in. I do not know how I have managed to do that. Just woke up one morning with bruising all around my lower leg and ankle and felt like I had bruised the bottom of my foot. I finally went to PCP and got an x-ray, and sure enough, a fractured/chipped bone in the 5th metatarsal. So I have to wear a boot for a few weeks.

It's just really odd to me that I have peripheral neuropathy in my right foot and IgM MGUS, and then I fracture the same foot and don't even know when I did it. I try to be very active (cross fit, run and walk), but this is slowing me down and I don't like it. It seems just as I get in the "groove" of it all, something shuts me down.

Anyway, I go for a follow-up appointment next week for blood work and PET scan, so hopefully nothing will have changed.

[jhorner]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by jhorner on Tue Jan 31, 2017 5:23 pm

Hello,

I had heterogeneous neuropathy in my hands and legs prior to diagnosis and it was confirmed with nerve conductivity tests. I also had a spontaneous, pathological fracture of my 5th metatarsal that happened walking down stairs. I just started treatment for multiple myeloma a few weeks ago due to the fracture at age 52. I also exercised my entire life since I was 17. My first indication that I wasn't well was chronic infections. The second indication was post exertional malaise, where I would get sick after exercise. I haven't been able to exercise regularly since 2013.

Did you have a bone density test completed? If so, do you have osteopenia?

Best,
J

[swmorgan]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by swmorgan on Wed Feb 01, 2017 11:21 am

Hello jhorner,

Yes, I did have a bone density test with all my initial diagnostic testing and everything looked fine. I had some normal degenerative thinning but nothing serious. I've been told for years that all my pains and numbness in my feet was due to over use, getting older, etc. I was surprised and somewhat relieved that it wasn't all in my head when I had the nerve conductive study and it showed damage to my nerves.

I did some physical therapy and that help with the mobility and range of motion in my foot which was really bad.

During my diagnostic testing, an infection was discovered in my lungs and their appeared to be another infection that had calcified. A lung biopsy revealed no malignancy, thank God. However, all the blood work for the most common infections/fungus have come back negative so they are not sure how to treat it and I'm having follow ups with Pet/CT scans.

Jhorner, were you first diagnosed with MGUS or multiple myeloma? All the best to you as you begin your treatments.

[random]

Re: Peripheral neuropathy prior to myeloma diagnosis?

by random on Tue May 29, 2018 11:53 am

I also had peripheral neuropathy before my multiple myeloma diagnosis. I assumed it was just bad shoes or tight socks and tried to ignore it. My podiatrist recommended seeing a neurologist, who found it was peripheral neuropathy. I also had persistent back pain prior to diagnosis. I finally had a bone density test and was found to have osteoporosis and osteopenia, apparently unusual in a 60-something male. Some months later I was diagnosed with anemia. Then I began getting bad migraines. I previous had had them once in a great while, but now had them often and was sensitive to all aromas, especially cheap perfumes and all “air fresheners.” Also to computer screens and fluorescent lights because of the flickering.

My arthritis doctor after my first consult sent me to a neurosurgeon, who said compression fractures in my back might be the cause and would heal over time. By then I was very frustrated with the back pain and insisted they look harder. He did an MRI and then a CT scan, saw what appeared to be lesions in my back, did a bone marrow biopsy that came back multiple myeloma with an M-spike of 2 g/dl (20 g/l). I am grateful he found it, but I also wonder how long I had multiple myeloma or pre-myeloma before diagnosis.

Thus the long answer. Sorry to go on and on!