Seeking info Dermatomyositis & sensorimotor polyneuropathy

Posted by suzyq515 @suzyq515, Jun 22 4:29pm

Just diagnosed with both dermatomyositis and sensorimotor polyneuropathy….have much to learn. Anyone else dealing with one or both??

Interested in more discussions like this? Go to the Neuropathy Support Group.

Hello @suzyq515, Welcome to Connect. Sorry to hear that you are dealing with two conditions but I'm sure you are not alone. I have idiopathic small fiber peripheral neuropathy and several other autoimmune conditions but not the same ones as you. Connect is a great place to learn more about your conditions. I did a search of Connect for both dermatomyositis and sensorimotor polyneuropathy but didn't see any other posts with both mentioned. There are quite a few different discussions for each one though and it might be helpful to learn what others have shared. If you click the links below you will see a list of the different discussions for each condition.

-- Dermatomyositis - https://connect.mayoclinic.org/search/discussions/
-- Sensorimotor polyneuropathy - https://connect.mayoclinic.org/search/discussions/

Has doctor or neurologist suggested any treatment to help with your symptoms?

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Hello @suzyq515, Welcome to Connect. Sorry to hear that you are dealing with two conditions but I'm sure you are not alone. I have idiopathic small fiber peripheral neuropathy and several other autoimmune conditions but not the same ones as you. Connect is a great place to learn more about your conditions. I did a search of Connect for both dermatomyositis and sensorimotor polyneuropathy but didn't see any other posts with both mentioned. There are quite a few different discussions for each one though and it might be helpful to learn what others have shared. If you click the links below you will see a list of the different discussions for each condition.

-- Dermatomyositis - https://connect.mayoclinic.org/search/discussions/
-- Sensorimotor polyneuropathy - https://connect.mayoclinic.org/search/discussions/

Has doctor or neurologist suggested any treatment to help with your symptoms?

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Good morning @johnbishop …..many thanks for your kind reply! I was just recently diagnosed with the Dermatomyositis after having an EMG 2 weeks ago and it was also discovered that I have the sensorimotor poly neuropathy as well. The DM is a relatively rare disease with 1 out of over 100,000 people being affected. That’s why it took sooooo long to identify.
My neurologist and rheumatologist both concur that the polyneuropathy is inherited. I see my rheumatologist tomorrow to discuss possible treatments. Like you, I have a host of other conditions such as Parkinson’s, Lupus, type 2 diabetes, Myasthenia Gravis, Celiac disease etc. Over 25 years ago, comprehensive genetic studies were done on me at Athena Labs in Boston. Evidently I am somewhat of a medical oddity given the fact that I have so many conditions at one time. I’ve been written up in a few medical publications and if I’m ever hospitalized, I can usually count on a few interns asking if I would mind sharing info about my unusual medical history. I so strongly agree that we need to learn everything we can about the disease(s) we live with and how to try and live a fulfilling life in spite of what ails us. I was an early onset Parkinson’s at 42….I just turned 75….and I told my Dr that yes, I have Parkinson’s, but it doesn’t have me!! That’s my attitude towards whatever I deal with. I wish you all the best with the challenges you face and again, thank you for taking the time to write. Warm regards, Susie

REPLY
Profile picture for suzyq515 @suzyq515

Good morning @johnbishop …..many thanks for your kind reply! I was just recently diagnosed with the Dermatomyositis after having an EMG 2 weeks ago and it was also discovered that I have the sensorimotor poly neuropathy as well. The DM is a relatively rare disease with 1 out of over 100,000 people being affected. That’s why it took sooooo long to identify.
My neurologist and rheumatologist both concur that the polyneuropathy is inherited. I see my rheumatologist tomorrow to discuss possible treatments. Like you, I have a host of other conditions such as Parkinson’s, Lupus, type 2 diabetes, Myasthenia Gravis, Celiac disease etc. Over 25 years ago, comprehensive genetic studies were done on me at Athena Labs in Boston. Evidently I am somewhat of a medical oddity given the fact that I have so many conditions at one time. I’ve been written up in a few medical publications and if I’m ever hospitalized, I can usually count on a few interns asking if I would mind sharing info about my unusual medical history. I so strongly agree that we need to learn everything we can about the disease(s) we live with and how to try and live a fulfilling life in spite of what ails us. I was an early onset Parkinson’s at 42….I just turned 75….and I told my Dr that yes, I have Parkinson’s, but it doesn’t have me!! That’s my attitude towards whatever I deal with. I wish you all the best with the challenges you face and again, thank you for taking the time to write. Warm regards, Susie

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@suzyq515 - You have a great attitude! I try to learn at least one new thing a day. Unfortunately, it sometimes turns out to be something I had previously forgotten 🙃. It definitely helps to look at life as a glass half full and not half empty.

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