Hi i was diagnosed with lupus/inflammatory myositis last August. This followed a period of sudden symptoms where i had pains in my legs shoullders arms an even my throat some pains were so severe that i couldnt get out of bed. I was told by several doctors it wa s virus but because my ck levels were v high 30,000 i was then told cant be virus ck too high must be a connective tissue disorder.
Iwas then put on steroids and i am still taking them. My symptoms continued for some months before i started feeling better. i had problems with cognitive functions. I couldnt concentrate i couldnt fill basic forms that were not normally a problem, i couldnt think straight, icouldnt understand others nad make myself understood, and mt speech was affected my words would not coome out as i wanted them to.
My legs felt like they didnt want to carry me i walked as though i was drunk and felt i was going to fall at anytime. My right leg kept giving way.
THe problems with my legs got better but has come back last couple of months.Iam now on 4mg of steroids.
I have seen my consultant and my bloods are all normal. She checked my muscle strength in my legs and she said that was normal, apart from the fact that i cannot raise my legs much at all when lying down. She said she did not know what the problem was with my legs an dthat may be she was missing some muscle diseases.
She aslo said thst she didnt think i had lupus or inflammatory myosistis becuase it responded too quickly to the steroids and ther ewas no muscle damage evident on mri scan and that i was probably the myositis virus. Iam now waiting to see a neurologist whom i wa s originaaly referred to because of the cognitive problems.
In the mmean time imy quality of walking is very poor.It comes on at anytime and can last from 30 minutes to half a day or all day.The weakness can be so bad that my walking comes to a halt and i can feel like i am going ot pass out and i have to stop.
I am totally confused especially given they now think it iwas avirus. Point is i hv enever been the same since last August. This all began 13 months after i had ababy my first child at the age of 44.
i will be only too grateful to hear from anyone who has experienced this or general comments.
Thankyou Seema
Hi Seema,
I'm so sorry you had/have to go through all of this! I had very similar symptoms. High CK, pain in legs and shoulders (my legs swelled ALOT though, looked and felt like tree trunks).
I couldn't walk more than a few feet without my legs and body giving up. After a muscle biopsy I was diagnosed with dermatomyositis. I have improved with steroids too and still can't walk a long time without breaks. And when I do too much I'm out of commission later that day and sometimes the next.
I hope you can find more help, because it sounds like there's more to it than you're being told!!! Until then I hope you find this site helpful, there's another site that's great for talking with people in the same boat too, it's dailystrenth.org.
Take care and keep us updated!!
Hi Nicole thanks for replying to me. Hav eyou been weaned off your steroid and did you ahve nay problems coming off tehm or being reduced ?
Seema
I've been tapered from 60mg a day down to 20mg as of now (60-40-30-20), so far, so good. Hot flashes and some pain in my legs, but nothing too crazy.
Nichole
Nicole,
did you have an mri scan and was that ok just ? wandering why you had to have the muscle biopsy as my mri was normal so a biopsy was not needed ! But clearly they are missing something somewhere.
Nichole Smith said:
I've been tapered from 60mg a day down to 20mg as of now (60-40-30-20), so far, so good. Hot flashes and some pain in my legs, but nothing too crazy.
Nichole
Thanks so much for sharing Seema.
It's amazing that this post has already been read 40 times. Sharing like this helps a lot more people than you might think.
My experience Seema, has been with Inclusion -body myositis. I really have a different experience with my illness. It responds very little to steroids although I have taken my fair share of them since being diagnosed in 2006. I have no advice to offer except hang in there and keep trying to get your doctors to figure out just what the disease is
t=Thanks i hope its soon !
Briian J. Frink said:
My experience Seema, has been with Inclusion -body myositis. I really have a different experience with my illness. It responds very little to steroids although I have taken my fair share of them since being diagnosed in 2006. I have no advice to offer except hang in there and keep trying to get your doctors to figure out just what the disease is
Seema,
Sorry I didn't see your question until now! I didn't have an MRI scan. They did an EMG where they place little needles into my muscles, there they found dermatomyositis. The doctor decided a biopsy to be sure. I'm told the biopsy is the tell all and that most patients get that to make the actual determination. I'm surprised you haven't had one! If you don't feel you are getting the absolute BEST care, look around for better. I've found we have to be our own medical advocates. Good luck, and please keep us updated! Feel free to ask anything.
Seema Choudhey said:
Nicole,
did you have an mri scan and was that ok just ? wandering why you had to have the muscle biopsy as my mri was normal so a biopsy was not needed ! But clearly they are missing something somewhere.
Nichole Smith said:
I've been tapered from 60mg a day down to 20mg as of now (60-40-30-20), so far, so good. Hot flashes and some pain in my legs, but nothing too crazy.
Nichole
Hi Nicole im surprise dive not had many responses to my last entry i think it scared people off !
Was wandering who diagnosed your condition and did he specialise in myositis ?
Seema
Nichole Smith said:
Hi Seema,
I'm so sorry you had/have to go through all of this! I had very similar symptoms. High CK, pain in legs and shoulders (my legs swelled ALOT though, looked and felt like tree trunks).
I couldn't walk more than a few feet without my legs and body giving up. After a muscle biopsy I was diagnosed with dermatomyositis. I have improved with steroids too and still can't walk a long time without breaks. And when I do too much I'm out of commission later that day and sometimes the next.
I hope you can find more help, because it sounds like there's more to it than you're being told!!! Until then I hope you find this site helpful, there's another site that's great for talking with people in the same boat too, it's dailystrenth.org.
Take care and keep us updated!!