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Old 12-14-2003, 09:40 AM   #1
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AngelaA HB User
Newly diagnosed & confused

Hi,

I'm 34 yr old and recently started having migraines. After a neuro ran blood tests it was discovered I had postive ANA antibodies. I was referred to the rheumatologist, and I might add the only rheumy for hundreds of miles. He diagnosed me with Raynauds, Myositis and Myalgia. His only advise was to read as much about the diseases as possible, keep my hands & feet warm and only come back to him if I got worse or got a butterfly rash. He said there was no treatment either prescription drugs or nutritional supplements to help. He said there is "nothing I can do to treat you, so don't come back". He really did not explain the myositis to me. From reading on my own I can only assume the Myositis is related to the continued swelling of the muscle of my lower leg that has occured ever since I broke the leg over 18 months ago. The swelling occurs where my leg struck the rock, though the actual break occured in a different location. The bone healed up fine according to x-rays, however no one had been able to explain why I have a two inch high knot that persists. I get stabbing, aching pains in the area. It comes and goes and worsens anytime I do any physical activity. I also have similar unexplained pains in my shoulder.

On a website I found a picture of a rash in neck/chest area of a myositis patient and was shocked because I had that same rash this past summer. Where can I get info on this disease or whatever it is? I didn't find much info online other than it is a "form of muscle inflammation". Is there really no treatment for it?

 
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Old 12-17-2003, 04:19 PM   #2
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Re: Newly diagnosed & confused

Hi, Im 27 and was diagnosed with Dermatamyositis a few years back. That's what it's called when you have skin involvment. I also have Raynauds and Lupus. Your Dr is mistaken. They treat myositis with steroids when it is bad. I receive IvIg infusions twice a month for my disease. If I didn't get these infusions I don't believe I would be able to walk. The disease makes you very week. The rash you are talking about is common for Dermatamyositis. If I were you I would look into seeing another Dr. There are treatments for this disease.

Good Luck,

Toni

 
Old 12-20-2003, 02:34 PM   #3
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AngelaA HB User
Re: Newly diagnosed & confused

Toni,

Can you tell me more about this IvIg Infusion thing? What exactly is it and who is giving it to you... a rheumy or a naturopath? I saw the dr that is treating my thyroid yesterday and updated her on my diagnosis with myositis and Raynauds. I told her how the rheumy had said there was nothing he could do for me. She said if I can find put from you what this IvIg thing is all about she will look into it and hopefully find a dr that can help me.

Thanks for your help!

Angela

 
Old 12-20-2003, 09:49 PM   #4
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Tricia/DM HB User
Re: Newly diagnosed & confused

Angela,
I also credit IVIG for my great improvement. This time last year I was wheelchair bound. I received monthly IVIGs for three consecutive months, (Jan.-March 03). I now get around using only a cane. I also take several other meds including Prednisone & Methotrexate.
There is treatment for Myositis. The following are a few links to wesites with more info.

[url]http://www.myositis.org/[/url]

[url]http://www.mdausa.org/disease/pmdm-d.html[/url]

[url]http://www.myositissupportgroup.org/[/url]

I hope this helps you.
Tricia/DM

 
Old 12-21-2003, 08:06 AM   #5
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AngelaA HB User
Re: Newly diagnosed & confused

Tricia,

I looked on those websites and only saw one reference to IVIG. My dr still needs to know exactly what it is and what kind of dr uses this therapy?

 
Old 12-21-2003, 08:10 AM   #6
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butterflytrans HB Userbutterflytrans HB User
Re: Newly diagnosed & confused

Yeah! I agree with ToniT...they do treat myositis with either IVIg or else steroids. The ironic thing with steroids as treatment for myositis is that steroids can cause myositis themselves and lead to muscle damage! They have to be used carefully.

Also, with dermatomyositis, you can often get characteristic rashes, the most common of which are "Gottren's papules" which, if I remember correctly, is a rash on the knuckles. There is also something called a heliotropic rash which presents with a rash around the eyes.

I'm pretty surprised that your rheumatologist sent you away and told you to come back if you had a "butterfly rash" on your face. That's.....please excuse my french....BS. What he should have done is do a lupus workup....the butterfly, or malar rash as it's called, is a sign of lupus.

To have lupus, you must have 4 of the 11 criteria that have been set out by the American Rheumatology Association.

Malar (butterfly) rash
oral ulcers
Discoid rash
arthritis
serositis (pleuritis or pericarditis)
neurological symptoms (psychosis, seizures, etc.)
positive ANA
Kidney dysfunction (lupus nephritis)
Positive antibodies (Anti-SM, anti-DNA, +VDRL)
Blood dyscrasia (anemia, low platelets)
Photosensitivity

You also have to have a heart workup because Dermatomyositis can cause cardiomyopathy and you must also be screened for malignancy because with polymyositis or dermatomyositis, you have an increased risk of cancers.

 
Old 12-21-2003, 02:42 PM   #7
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AngelaA HB User
Re: Newly diagnosed & confused

Quote:
Originally Posted by butterflytrans
Also, with dermatomyositis, you can often get characteristic rashes, the most common of which are "Gottren's papules" which, if I remember correctly, is a rash on the knuckles. There is also something called a heliotropic rash which presents with a rash around the eyes.

I'm pretty surprised that your rheumatologist sent you away and told you to come back if you had a "butterfly rash" on your face. That's.....please excuse my french....BS. What he should have done is do a lupus workup....the butterfly, or malar rash as it's called, is a sign of lupus.


You also have to have a heart workup because Dermatomyositis can cause cardiomyopathy and you must also be screened for malignancy because with polymyositis or dermatomyositis, you have an increased risk of cancers.

I had an upper chest rash which matched a photo I saw on a Myositis site therefore my dermatologist has refined my diagnosis to dermamyositis. That's the extent of the skin involvement unless seborrheic dermatitis is considered a symptom? My thyroid dr, who is a OB/GYN with endo training told me if I get the chest rash again that I need to get it biopsied for positive identification...which no one else even told me was a possibility.

What kind of heart workup are you talking about? What kind of tests exactly? So other blood tests were done by the rheumy...like anti-DNA, some schlerdoma tests, SED rate and a bunch of other stuff I can't remember off the top of my head. He sent me a letter saying the results were unremarkable, thus I am being dismissed. However it is my other drs... dermatologist who herself has Raynauds that explained more to me about my Raynauds & Myositis diagnosis and my OB/GYN is going to treat me with Guiafenesin sp? for the fibromyalgia.

 
Old 12-21-2003, 06:44 PM   #8
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butterflytrans HB Userbutterflytrans HB User
Re: Newly diagnosed & confused

Quote:
Originally Posted by AngelaA
I had an upper chest rash which matched a photo I saw on a Myositis site therefore my dermatologist has refined my diagnosis to dermamyositis. That's the extent of the skin involvement unless seborrheic dermatitis is considered a symptom? My thyroid dr, who is a OB/GYN with endo training told me if I get the chest rash again that I need to get it biopsied for positive identification...which no one else even told me was a possibility.
Have you ever had the rash around your eyes or on your knuckles that I was talking about?
[quote]What kind of heart workup are you talking about?[quote]
You should have an EKG and a baseline echocardiogram done to see if you have any heart beating problems.
Quote:
So other blood tests were done by the rheumy...like anti-DNA, some schlerdoma tests, SED rate and a bunch of other stuff I can't remember off the top of my head. He sent me a letter saying the results were unremarkable, thus I am being dismissed.
If I may make an assumption, are you from the states? There are SO MANY posts on this board about specialists in the States who dismiss their patients like that. Does this happen often? A lot of American posters on this board seem to have a negative view of their specialists (and I don't blame them) because they are so dismissive...why is it like that ? (I'm from Canada, we don't seem to have that bad of an impression of or specialists here)
Quote:
However it is my other drs... dermatologist who herself has Raynauds that explained more to me about my Raynauds & Myositis diagnosis and my OB/GYN is going to treat me with Guiafenesin sp? for the fibromyalgia.
Oh...I didn't realize that you have FM. Do you have any other diseases like IBS or endometriosis to complicate your FM? Can you describe to me the types of pains you get with your FM?

 
Old 12-21-2003, 08:32 PM   #9
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AngelaA HB User
Re: Newly diagnosed & confused

[QUOTE=butterflytrans]Have you ever had the rash around your eyes or on your knuckles that I was talking about?
[quote]What kind of heart workup are you talking about?
Quote:
You should have an EKG and a baseline echocardiogram done to see if you have any heart beating problems.

If I may make an assumption, are you from the states? There are SO MANY posts on this board about specialists in the States who dismiss their patients like that. Does this happen often? A lot of American posters on this board seem to have a negative view of their specialists (and I don't blame them) because they are so dismissive...why is it like that ? (I'm from Canada, we don't seem to have that bad of an impression of or specialists here)

Oh...I didn't realize that you have FM. Do you have any other diseases like IBS or endometriosis to complicate your FM? Can you describe to me the types of pains you get with your FM?

I haven't had the rash on the face. I may have had the rash years ago on knuckles, but at the time I knew nothing of myositis. Actually I never heard of it till I got the diagnosis. I've just had the rash on chest after sun exposure and in fact had it for a few months starting around April or May. I just thought I had a "heat rash".

Yes you are right in your assumption that I live in the States. Few of those I know brag of any positive experience with drs especially specialists. Actually my derma is cool, her husband is my allergist who is cool too. The ob/gyn treating my thyroid is also a rare gem. However I have seen two neuros for migraines that were arrogant idiots and of course there is the rheumy who says there is no treatment for me. Now when I lived in another state, in early 20's, I went to a couple MD's and then a rheumy before being diagnosised with FM. That rheumy also offered me no help and the MD's thought it was all in my head. Eventually that pain did lessen after moving to the Southwest and I contributed it to a change in climate.

Now this new rheumy point blank told me I did not have FM because I do not have trigger points on the joints when he prodded me. Yet on the bill the office gave me the diagnosis was Raynaud's, Myositis and "Myalgia". I'm supposing he means FM. Is the guy not confusing?? The pain I feel is in the muscle surrounding the fibula that I broke two summers ago. If I exercise any, my lower leg swells up like a balloon and I get stabbing pains in it. The orthopaedist I was seeing along with the phys. therapist never seemed to believe that it was a problem. Again...always in the patients head. Overall I have throbbing to sudden stabbing pains throughout my body, mostly in the soft tissue, sometimes in the foot and hand joints. Then there's the Raynaud's where my feet hurt like I had frostbite and I will get burning and stabbing pains in feet. I have it in hands too, but not as bad. Again the rheumy said I barely have Raynauds because there was not extreme constricting of vessels when he looked at my fingernails. However I think he should have checked out my toenails too! Ironically I have not had migraines before until starting in August...around time I seemed to flare and it was discovered I had high ANA. The neuros would not give me migraine meds and I was laughed at because I have had three head injuries, two resulting in concussion. I ended up finally getting treatment from a Family Medicine specialist who has me on Imitrex, though supposedily those with Raynauds should not take it. She was going to switch me to Elavil but I have had bad reaction on the smallest dose available and then she suggested Neuritin which I refuse to take. So that's the point I am at now.

 
Old 12-21-2003, 08:38 PM   #10
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butterflytrans HB Userbutterflytrans HB User
Re: Newly diagnosed & confused

Myalgia just means "muscle pain"...it is not necessarily the same as fibromyalgia....your rheumatologist is right though, in order to have FM, you have to have a positive pressure points at 11 of the 18 sites. If you don't, then by definition you don't have FM. I think he put down Myalgia on an "NYC" basis.....i.e. a muscle pain which is not yet characterized.

 
Old 12-22-2003, 08:50 PM   #11
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Tricia/DM HB User
Re: Newly diagnosed & confused

Here are a few sites that explain what IVIG is. My rhuematologist prescribed mine for me and I was admitted to the hospital for the 3 day infusion process. Others see neurologists that specialize in neuromuscular diseases. You could also ask your doctor to refer you to your local MDA clinic. They have very knowlegeable doctors that are familiar with myositis and your clinic visits are free when diagnosed with a muscular dystrophy.

[url]http://www.rxlist.com/cgi/generic3/gammagard.htm[/url]

[url]http://www.nyrdtc.nhs.uk/docs/eva/IVIg.pdf[/url]

[url]http://content.nejm.org/cgi/content/abstract/329/27/1993[/url]

[url]http://health.yahoo.com/health/drug/202641/[/url]

[url]http://www.ninds.nih.gov/news_and_events/pressrelease_dermatomyositis_122993.htm? type=archived[/url]

[url]http://www.albany.net/~tjc/ivig99.html[/url]

[url]http://rheumatology.hss.edu/pat/specInfo/sideEffects/ivig_use.asp[/url]

I hope that there is something in here you can print out for your doctor.

Tricia/DM

Last edited by Tricia/DM; 12-23-2003 at 08:21 PM.

 
Old 06-02-2006, 03:10 AM   #12
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candlelite HB User
Re: Newly diagnosed & confused

angela,

i also had the rash, but it is now gone. i was diagnosed with polymyostis and rhynard about four years ago through a muscle biopsy. i too am receiving ivg two days a month, i have been recieving it now for 6 months and it does help. i am on other medications including predisone and metho (injections). i went to several doctos before all of this and no one was able to help until i went to a muscle doctor i have been through it all.

 
Old 08-08-2006, 08:58 PM   #13
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mword HB User
Re: Newly diagnosed & confused

Quote:
Originally Posted by AngelaA
Tricia,

I looked on those websites and only saw one reference to IVIG. My dr still needs to know exactly what it is and what kind of dr uses this therapy?
Hi Angela,
What type of Dr, is treating you? If your doctor does not know what IVIG is it's time for change. I was diagnosed with Polymyositis in 2004. After 3 months of Prednisone and Imuran treatment my autoimmune doctor was concerned that CPK is still elevated. He added an IVIG (Gamma Globulin) as part of my treatment. This is an IV infusion that might take 6 hours in the hospital as an outpatient. Doctors usually use this as the last treatment if they don't get a good result with the pills. One treatment is over $5,000. My autoimmune specialist ordered a series of 3 consecutive days/month for 3 months- thats over $45,000 for an outpatient. Thanks God, I have an excellent insurance. I am back to normal last month cpk was 43. You seem to have a lot of different doctors. That's fine but you need to have a main doctor that can coordinate your treatment. Mine was my autoimmune specialist. He ordered the tests necessary to diagnose my condition, sent me to see neuro and other specialist for second opinion but he is the one that look at ALL the results/talk to other doctors to get the right diagnosis BEFORE starting my treatment. Below is a definition of IVIG, just type IVIG for search and you find a lot of information on it.Good luck

What is IVIG?
IVIG refers to Gamma Globulin which is the chemical portion of blood that contains immunoglobulins or antibodies. They are produced by Plasma Cells and are an important part in the Immune Response. There are five different classes of ImmunoGlobulins: IgG, IgA, IgM, IgD, and IgE.

 
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