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MonikaK 
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About Me
MonikaK
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About Me
Diagnosed with DM August 2009. Also CRPS/RSD, MS. On 20 mg prednisone and taking IVIg, pain medication.
Diagnosed with DM August 2009. Also CRPS/RSD, MS. On 20 mg prednisone and taking IVIg, pain medication.
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Interests
Singing, jewelry making, scuba diving.
Singing, jewelry making, scuba diving.
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Journal
MonikaK hasn’t written any journal entries yet. -
Hugbook
Hug
thanks so much for reaching out to a stranger,, it's been helpful..
Hug
thank you very much for the hug munikak
Hug
Nice To Meet You!!! From Jeni At
http://www.msmagnet.org
Thanks
Hi Monikak, Thank you for thinking of me, it always helps to know that. I am doing a little better, I guess it takes a while after surgery for your body to get used to all the changes. I am not really up and about yet but getting better. I think I'm getting the fever symptoms from the DM that is making me feel sick. I can't wait to go for my post-op, I hope they have good news and some appointments to have the brain tumor checked. Sometimes the hardest part is not knowing. I think the hard part is nobody fully understands unless they are going through it, so it's hard not to feel alone. I'm glad I sugned up for this group, it does help.
Prayer
Hi Monikak , I want to thank you for your hug. I hope and pray that things will work out for you. Right now I feel so bad with the temp change how about you? Talking to people and praying is the only thing that helps with the pain. Pain killers only work for a while , but I find that if I keep my mind off the pain it will go away. LoL sometime it works. Take care and i hope to hear from you .
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Photos
MonikaK hasn’t uploaded any photos yet
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Support Groups
Close Polymyositis & Dermatomyositis
Treatments
- IVIG Somewhat Helpful
- It seems to be helping but running out since 2.5 weeks after the first transfusion I'm seeing a slight decline.The only side effects I've had are minor nausea 2 hours after completion and some pain for 4 days after in the vessel used for the transfusion. Mine is Privigen 50g in 500mL just under 1g/kg given over 6 hours on one day once monthly. I am very thankful to all the blood donors out there. Thanks for your generosity and for taking the time and effort to make this generous contribution.
- Prednisone Somewhat Helpful
- 20 mg a day.Acne increased nighttime sweats insomnia. bruising increased appetite.
- IVIG Working / Worked
- It seems to be helping but running out since 2.5 weeks after the first transfusion I'm seeing a slight decline.The only side effects I've had are minor nausea 2 hours after completion and some pain for 4 days after in the vessel used for the transfusion. Mine is Privigen 50g in 500mL just under 1g/kg given over 6 hours on one day once monthly. I am very thankful to all the blood donors out there. Thanks for your generosity and for taking the time and effort to make this generous contribution.
- Prednisone Somewhat Helpful
- 20 mg a day.Acne increased nighttime sweats insomnia. bruising increased appetite.
Close Multiple Sclerosis (MS)
I want to be informed about the latest research and successes, and share my own. I'm currently asymptomatic on the MS front - no category for that! Having been slammed by another auto-immune condition, dermatomyositis, I really appreciate the support from this online community.
Open Chronic Pain
To share experiences and learn from others.
Treatments
- Marijuana Considering
- I don't like the potential it has to alter my mind, and don't know in advance what it will be like. I could try it legally here, but there is so much going on with my health, that it might confuse the facts too. But I don't know that I want to wait too long if it might be a viable, less potentially damaging alternative to opioids...
- Meditation Working / Worked
- Good, but hard for me to do on my own.
- Morphine Working / Worked
- Part of the current long-term strategy I would like to not have.
- Naproxen Not Working
- Makes me very sick.
- Nerve Blocks Not Working
- Had the ones at the pain site - pretty useless.
- Neurontin Not Working
- I had very bad side effects.
- Oxycodone Somewhat Helpful
- Helped
- Physical Therapy Not Working
- Pushed and pushed. Got stronger and pain got worse to the point of severe distress. Smarter about this now, but the type A personality can be a problem when your history is work hard, do well.
- TENS Somewhat Helpful
- Not much to be said for this...
- Duragesic Patch Working / Worked
- Part of the current longterm strategy I would like to not have.
- Hydromorphone Not Working
- Is not the same as MSContin and caused problems when there was the MSContin recall.
Open Reflex Sympathetic Dystrophy
To share my experience and learn from others.
Treatments
- Neurontin Working / Worked
- Very bad side effects.
- Morphine Working / Worked
- Part of current strategy I wish wasnt needed.
- Duragesic Patch Working / Worked
- Part of current strategy I wish wasnt needed.
- Marijuana Considering
- I would like feedback on this as an alternative to opioids. It would be legal for me to use here but I dont really want to add more stuff if it isnt an adequate solution...
