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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Autoimmune Dysautonomia

by lpatterson30 on Tue Oct 01, 2013 5:37 pm

Prior to my diagnosis of Stage 1 multiple myeloma I presented to a neurologist with a complaint of sensations of vibrating. I thought the source was external; but it was indeed internal. It was very profound. When I finally reached the neurologist he found the multiple myeloma in my bloodwork so off I went to the oncologist. I am now ready to address the vibrations as they are still present and affecting the quality of my life. I am also having a constant ringing (for lack of a better description) in my ears. During the day I am busy and distracted with work; but at night it becomes distracting making it difficult to fall asleep.

Being a nurse with 36yrs. under my belt I have researched for months what the cause could be. I recently came across Autoimmune Dysautonomia. I plan to see a neurologist in November; but wanted to know if my oncologist could treat me for this.

Has anyone else heard of Autoimmune Dysautonomia? It is associated with someone having a blood cancer.



Re: Autoimmune Dysautonomia

by Jaksix on Tue Oct 01, 2013 9:04 pm

I was so happy to read your post. I have had ringing in my ears for years. The last 6 months it has become unbearable. It keeps me awake, disrupts my day and I swear I can feel vibrations with it. I was diagnosed with MGUS in 2009, then smoldering a few months ago. I have abnormal chromosomes; t(4:14), amp 1q and del 13. I am an RN as well!
I also have Sjögren's, an autoimmune disease. I finally am addressing my ringing too, appointment tomorrow. I stopped taking Neurontin 6 months ago, so it may be time to restart it. I want to know what the actual cause, autoimmune or abnormal proteins. I am anxious to hear from others out here. Good luck!

Name: Jules
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2007 MGUS, 2012 Smoldering
Age at diagnosis: 42

Re: Autoimmune Dysautonomia

by Cheryl G on Wed Oct 02, 2013 11:23 am

There have been a couple of discussions here in the forum about hearing-related issues which may be the result of either multiple myeloma or treatment for the disease. They may not be exactly relevant to your situation, lpatterson30, but I thought it might be useful to reference them, just in case they have some information that might help.

The two discussions I found were:

Cheryl G

Re: Autoimmune Dysautonomia

by Lin516 on Wed Oct 02, 2013 4:01 pm

The tinnitus is very annoying, yes; but the neuropathy is much worse. When it first began, 6/2012, I thought my house was vibrating and even called the police dept. to see if there were any other complaints. My B/P was constantly elevated, my pulse was very high, and I could not sleep. I felt stuck in a flight mode of my fight/flight. Looking back I do not know how I functioned. I thought I was going crazy. After finding out it was not an external stimuli I can handle my symptoms better; but they are still affecting the quality of my life and sleep.

Autoimmune dysautonomia can target peripheral synapses, ganglionic neurons, autonomic nerve fibers or central autonomic pathways. This autoimmune disorder can be mediated by neuron specific IgG or effector T-cells.

The disorder may be idiopathic or may be paraneoplastic,

- >meaning that the disorder occurs in the context of an immune response to a systemic cancer.

Name: Lin
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 04/09/2013
Age at diagnosis: 57

Re: Autoimmune Dysautonomia

by WeatherNurse13 on Wed Oct 02, 2013 7:42 pm

This is very interesting. I have never heard of autoimmune dysautonomia.

I have some of these symptoms as well, although more on the mild side.

1) Occasional tinnitus 2) Internal vibrating sensation. [ I thought my cell phone was vibrating and it was in my purse!] 3) I tend to have vasovagal responses with GI activity. 4) Three months after my autologous stem cell transplant, I presented with granuloma annulare which is suspect to be an autoimmune response. 5)I am also being treated with metoprolol for tachycardia that presented after my hospitalization for pneumonitis and treated with prednisone. My heart would race every time I got up and walked for even a few minutes. My transplant doctor said it was anxiety. 6) My daughter has an autoimmune disorder, raynaud's with + SCL70 and 7) My mother has the rheumatoid factor.

I was treated for Myeloma one year ago with VDT-PACE, CyBOrD and SCT. I just wonder if all these things are some how related?

By the way, I am a Nurse too.

Plasma Cell Leukemia Survivor '13

Name: Gracie
Who do you know with myeloma?: Self
When were you/they diagnosed?: 10/2012
Age at diagnosis: 49

Re: Autoimmune Dysautonomia

by Lin516 on Wed Oct 09, 2013 6:20 am

Thank-you to all for you thoughtful replies. I have a 24HrU and labs this Friday. I have requested any serological screening for the (autoimmune dysautonomia) paraneoplastic neuropathy. We will see if my message got through to the Oncologist as I've not heard back from the office.

Additionally, I have had a GI upset for the past week. I feel like I've consumed draino. Slight cramps/diarrhea. I have also experienced orthostatic hypotension but not on a consistent basis. I'm only putting this out here for others if they too have experienced it.

Thank-you all & sending healing prayers to all!

Name: Lin
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 04/09/2013
Age at diagnosis: 57

Re: Autoimmune Dysautonomia

by ClassicKate on Sun Oct 20, 2013 1:21 pm

I have the same symptoms mentioned by each of you in this post. The vibrations/pulsations started in head/ear/scalp area, but sometimes has been "all over". I have the high pulse rate, which is helped by the Metoprolol. I have severe constipation, reflux, tingling and numbness. I am very sensitive to slight elevation of heat and cold. And have an increase in pulse upon standing of 30-35 beats.

My myeloma Doctor recognizes that there is a relationship of autoimmune disease to multiple myeloma, but states that no one is sure yet what they relationship is.

Does any of you have skin involvement besides rashes and granuloma annulare, such as dryness, tight sensations or sensitivity to touch?

Has anyone had symptoms improve or go away after SCT?


Re: Autoimmune Dysautonomia

by Guitarnut on Sun Oct 20, 2013 3:55 pm

Autoimmune diseases. Hmmm...

I was diagnosed with multiple myeloma in 2011 at 47. About a year prior I started having arthritis symptoms in my knee, sometimes horribly so. Since my multiple myeloma diagnosis I have also been diagnosed with arthritis in both knees, left shoulder and lower back along with disc problems. I was also just recently also diagnosed with Graves disease, which is also autoimmune.

This thread has really got my brain a whirring about a possible connection. (as if I didn't have anything else to think about. Lol!)

Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Autoimmune Dysautonomia

by lys2012 on Mon Oct 21, 2013 11:51 am

I'd be interested to read more about autoimmune disease's relationship with Myeloma.

I was recenlty diagnosed with autoimmune thyroiditis (am on thyroid replacement meds) and I have hear once you get one autoimmune disorder you are likely to deveop more then one. (because your immune system is overactive?) My multiple myeloma is in remission for several years so not active.


Re: Autoimmune Dysautonomia

by Lin516 on Mon Oct 21, 2013 7:40 pm

I explained my symptoms to my oncologist and coupled with my labs I will start chemo tomorrow.
Velcade, Revlimid, and dex. Looking back, I think I have had smoldering since before 2008.

Someone mentioned skin. I have had "acne" for over 30 years. I have been on Accutane 4 times, every antibiotic in the PDR, and use Retin-A. I have tried spirolactone and Vit. A and even oral Dapsone. Absolutely NO improvement. The places take months to heal; but yes I pick at them. :(

Name: Lin
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 04/09/2013
Age at diagnosis: 57

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