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BonusMom
07-05-2011, 11:30 AM
I've posted previously about muscle weakness in my legs, radiating into the hips. I was referred by my PCP to the neuro (Dr. L) I normally see for my migraines (love him BTW). He referred me out for an EMG/NCS, which was normal, but was performed by a neuro who I described as a quack-based on his bedside manner and advice to exercise as that's simply my issue.

I returned to Dr. L today in follow-up. He said that since it's been four months since the "acute" phase of the muscle weakness began, I best return IMMEDIATELY when I experience the issue instead of waiting three months to begin the diagnostic process. Dr. L said that clearly I had muscle inflammation, based on my physical exam. I explained that I waited to make an appointment hoping that the weakness would simply go away, not expecting it to last so long. I told him that I didn't want to be one of those patients that the doctor dreads seeing and is always in their office.

Dr. L completely validated me/my symptoms and I left feeling better than I did last week after meeting the quack. So, of course, I got to work and googled "muscle inflammation" and what came up but Polymyositis, what I believed to be my "issue" when this began. It's yet another autoimmune disease; it's a sibling of Dermatomyositis (which my half-brother has); it's treated basically the same as SLE/Sjogren's. So yes, it's simply another darn label. But no, it's NOT all in my head. So there.

lovedbyHim
07-05-2011, 12:18 PM
I've posted previously about muscle weakness in my legs, radiating into the hips. I was referred by my PCP to the neuro (Dr. L) I normally see for my migraines (love him BTW). He referred me out for an EMG/NCS, which was normal, but was performed by a neuro who I described as a quack-based on his bedside manner and advice to exercise as that's simply my issue.

I returned to Dr. L today in follow-up. He said that since it's been four months since the "acute" phase of the muscle weakness began, I best return IMMEDIATELY when I experience the issue instead of waiting three months to begin the diagnostic process. Dr. L said that clearly I had muscle inflammation, based on my physical exam. I explained that I waited to make an appointment hoping that the weakness would simply go away, not expecting it to last so long. I told him that I didn't want to be one of those patients that the doctor dreads seeing and is always in their office.

Dr. L completely validated me/my symptoms and I left feeling better than I did last week after meeting the quack. So, of course, I got to work and googled "muscle inflammation" and what came up but Polymyositis, what I believed to be my "issue" when this began. It's yet another autoimmune disease; it's a sibling of Dermatomyositis (which my half-brother has); it's treating basically the same as SLE/Sjogren's. So yes, it's simply another darn label. But no, it's NOT all in my head. So there.



Oh I so hear you! How often must we be so misjudged and negated due to someone's ego. Tomorrow I must face a new specialist and there is hope and dread as I have experienced horrible visits and wonderful visits. Yep I sure do here you! Tomorrow I want to come back from my visit and say, "SO THERE!"

magistramarla
07-05-2011, 01:57 PM
Hi BonusMom,
I am so glad that you have a decent neuro. Polymyositis was one of the things that my good rheumy back in Texas mentioned as a possibility for my muscle problems.
Let me ask this - Is your problem just muscle weakness, or do you also have muscles that "seize up" and get rock-hard?
My calf muscles on both legs have done that. They are painfully hard, and you would think that I'm a runner from the shape and tone of them.
Now, the muscles in my thighs, especially in the back, are spasming and getting hard, too.

I saw the specialist at UCSF for the Spasmodic Dysphonia last week. I still can't talk after my botox shot! He thinks that the two conditions are related.
He gave me some links for information about both Dystonia and Hereditary Spasmodic Paraplegia, which he thinks I should be worked up for.
Here's the Dystonia link: http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm
Here's the HSP link: http://www.sp-foundation.org/hsp.html

Now my next task is to get the rheumy to listen. She probably won't, since she didn't think of it. Sigh... I know that my docs will listen when I get back to SA.
If yours is Polymyositis, the drugs that we take for other AI issues, like Plaquenil and MTX, should help. I hope that the docs find something that will help you!
Many hugs,
Marla

Peridot20_Gem
07-05-2011, 03:43 PM
Hi Bonusmom,

Sorry to hear about your extra issues but me and marla have the same issues with what she's stated

My calf muscles on both legs have done that. They are painfully hard, and you would think that I'm a runner from the shape and tone of them.
Now, the muscles in my thighs, especially in the back, are spasming and getting hard, too.

It get so painful at times, i'm taking plaquenil and been on it a month and in time hoping the issues will ease.

I do wish you all the best with getting it sorted. Terry xxx

Saysusie
07-05-2011, 04:49 PM
I am so glad to hear that you have a doctor who validates you, who is interested in assuring that you are treated, and who is only interested in your improved health. So, you are absolutely right by stating that neuro was a "Quack", especially in light of his recommendations and dismissal of you. So, let's throw him a combined "raspberry" pffffftttt.........JERK!
You are right that Polymyositis and Dermatomyositis are both 1st cousins and also distant relatives of SLE. In fact, they are known for traveling together, piggy backing off of one another! One of my dearest friends has both Lupus and Dermatomyositis..she takes Prednisone to treat both conditions.
I hope that you and your doctor find a treatment that alleviates or, at the least, prevents the muscle weakness from causing you further problems.

Peace and Blessings
Namaste
Saysusie

Manderson
07-05-2011, 05:27 PM
We all need a Dr. L! I hope my new rheumy turns out to be awesome.

lovedbyHim
07-05-2011, 05:53 PM
I am so glad to hear that you have a doctor who validates you, who is interested in assuring that you are treated, and who is only interested in your improved health. So, you are absolutely right by stating that neuro was a "Quack", especially in light of his recommendations and dismissal of you. So, let's throw him a combined "raspberry" pffffftttt.........JERK!
You are right that Polymyositis and Dermatomyositis are both 1st cousins and also distant relatives of SLE. In fact, they are known for traveling together, piggy backing off of one another! One of my dearest friends has both Lupus and Dermatomyositis..she takes Prednisone to treat both conditions.
I hope that you and your doctor find a treatment that alleviates or, at the least, prevents the muscle weakness from causing you further problems.

Peace and Blessings
Namaste
Saysusieo





Pfffffttttt......

I just love your raspberries! I am truly laughing out loud.

ritzbit
07-05-2011, 06:52 PM
Whats the difference between Polymyositis and Dermatomyositis and just Myositis?

magistramarla
07-05-2011, 08:01 PM
Whats the difference between Polymyositis and Dermatomyositis and just Myositis?

Myositis is the general term for inflammation of a muscle. http://en.wikipedia.org/wiki/Myositis
Polymyositis means "inflammation of many muscles" (Latin). http://en.wikipedia.org/wiki/Polymyositis
Dermatomyositis means that the skin is involved in the inflammation, as well as the muscle. http://en.wikipedia.org/wiki/Dermatomyositis

Hope this helps.
Hugs,
Marla

tgal
07-05-2011, 08:07 PM
I am so glad to hear that you have a doctor who validates you, who is interested in assuring that you are treated, and who is only interested in your improved health. So, you are absolutely right by stating that neuro was a "Quack", especially in light of his recommendations and dismissal of you. So, let's throw him a combined "raspberry" pffffftttt.........JERK!
You are right that Polymyositis and Dermatomyositis are both 1st cousins and also distant relatives of SLE. In fact, they are known for traveling together, piggy backing off of one another! One of my dearest friends has both Lupus and Dermatomyositis..she takes Prednisone to treat both conditions.
I hope that you and your doctor find a treatment that alleviates or, at the least, prevents the muscle weakness from causing you further problems.

Peace and Blessings
Namaste
Saysusie

LOL I loved the pfffffttttttttt

Thanks for the smile!

steve.b
07-05-2011, 09:42 PM
So, let's throw him a combined "raspberry" pffffftttt.........JERK!


love the elocuetion lession.(sp)

Peridot20_Gem
07-06-2011, 06:30 AM
Myositis is the general term for inflammation of a muscle. http://en.wikipedia.org/wiki/Myositis
Polymyositis means "inflammation of many muscles" (Latin). http://en.wikipedia.org/wiki/Polymyositis
Dermatomyositis means that the skin is involved in the inflammation, as well as the muscle. http://en.wikipedia.org/wiki/Dermatomyositis

Hope this helps.
Hugs,
MarlaGood one Marla,

That helped ritz just in 3 quick definitions.

ritzbit
07-06-2011, 09:23 AM
So after reading those articles Im wondering what the connection between ILD and polymyositis is because my rheumy said I had myositis and then a month or two later I found out I had ILD as well. And that article seemed to say there was a connection between ILD and polymyositis?

magistramarla
07-06-2011, 10:22 AM
Ritz,
Yes, I re-read it and it wasn't exactly clear about the connection, was it? It just said that ILD is a concern, right?
I think that this is something that you will need to really pin your docs down about. Take this info with you, and ask about the connection
Hope this helps.
Hugs,
Marla

Peridot20_Gem
07-07-2011, 08:28 AM
Hi Ritz,

All the best mate about finding out the connection..it looks well we're finding stuff out because the doctor's ah got time. xxx

Linda From Australia
07-23-2011, 10:17 PM
BonusMum,

Now that I have an answer for my muscle weakness, it make me wonder how you are going with your muscle weakness?

Peridot20_Gem
07-24-2011, 03:21 AM
Well if Ritz and other member's feel like me...it's a downhill slop everyday and things are a major and i mean major effort to do.