Hi Maggie. I am sorry to read your news but pleased in one way that a decent doctor is listening to you. When you find a good Rheumatologist you will be on the right path. It must be horrible for you Maggie. Be strong, you have to rely on yourself. Things will change now you are having decent medical advice and treatment. I know when the Pred kicks in you will have less pain and be moving better. Please let us know how you are. Autumm

Maggie, I am sorry to hear of your brain stem inflammation. The good news is that you will have a new rheumy! You can be glad that you have a quick thinking neurologist that was able to find the source of your walking problems.

I will put in some prayers for you. Hopefully, your doctors will get the inflammation under control quickly.

Keep us posted if you are able.

Hi girls Thank you for your reply,You are both right I have been in incredible pain,the Dr thinks I have 3 different conditions and is not ruling out MS that Scares me a lot,more Blood tests tomorrow!
What else might they find? I now use a wheel chair on bad days never thought it would come so soon! Im not going back to the Rheumatologist we found two other once now I just have to eliminate.
Im not in very good shape right now Prednisone is up to 10mg YUCK!!
It is not easy to remain strong when you can't walk or feel so ill.
Will keep you up to date when the Diagnose comes through
Thank you for your encourage me ,take care, stay well, best wishes Maggie

Hi Maggie. My best to you. Take heart, your new Rheumatologist may come up with the goods. 10mgs of Prednisolone does not seem enough. Are you on anything like MTX or Azathioprine. Have you ever had a muscle biopsy. Autumm

The Muscle Biopsy showed Necrosis of all muscle,Im on Methotrexate 20 mg by injection now,and Folate,the inflammation of the ponds in the brain stem are the same as someone with MS . I went for Blood Tests this morning for specific cancer finders and other items,I had to pay extra for these as they are not commonly done.So the waiting continues! while I go down hill fast.
Thank you Autumm for your message it does brighten up my day to read your suggestion and positive input.
Kind regards Take care Maggie

I'm so sorry you're going through this difficult time, Maggie. I will say a prayer for you. Hopefully doctors will get things under control for you soon.

Hi Maggie. The muscle biopsy points to Myositis. I don't know anything about the Brain connection. I started out on 60mgs Pred tapering slowly each month if the labs showed inflammation going down. Caner screening is part of the Myositis Protocol at diagnosis so do ask them why you are paying extra for it. I am not sure how your health system works but its worth the question. The MTX can take six months to kick in. I do hope you get to a decent Rheumatologist soon. Autumm

Maggie, sounds like the Neurologist wants to get to the bottom of all of this, i am concerned that youa re going down hill fast, that is not a good sign, but hopefully that will turn around soon, and just stable is okay at first. 10mg of steroid is not traditionally enough to stop myositis, it is usually much higher than that, and they often do IV steroids of 1000 mg a day for a few days to get things in order. If the walking gets worse, let the Neurologist know ASAP. Loosing that when more steroids might help would be a shame.
Sending you prayers and positive healing thoughts.

Thank you all my Friends for your great input I truly would not know what to do without your concern and positive wishes.and Support ,It has taken me this long to find the energy to response ,my GP appointment is tomorrow I'm on a lot of pain medication just to be able to move my legs .I m bed bound most days and the illnesses are taking hold fast,will see a new Rheumatologist within two weeks.my GP is at a loss too but still a very good Dr-they are not giving up on me,but I am slowly- Im on an Antidepressant now,will keep you up to date somehow Thank you all,Kind Wishes to you all Maggie

Hi Maggie. All the best with your appointments. You will get there. Right doc, right Meds and time. Best wishes. Autumm

Hi everyone from my comfy Bed ,never spend so much time in it before! Well just returned from GP all Drs are in a worry as my CPK is in the 1000's and I am going down hill.It is a flare up(i assume ) but it is knocking me flat, all my meds have been increased and some more added.((((The Nurses Union have taken my case on board for being dismissed because of having a lower immune system.it is discrimination ,well see.)))I wish my Drs were more switched on as I could feel going down hill for a week or so.Pretty scared at all this I must admit cuddle a Teddy Bear now,Well my Rhumy Just rang ,would like me in Hospital, Thanks everyone for your support Hope you are keeping well !! Sciatic----My Foot!!!!!!!!

Hi Maggie. Sad you are in a flare, but glad your Meds are all now increased. If the Rheumatologist got on to it a lot earlier this would have not happened. What was she thinking, I think you could go after her so she does not do this to other people. Am delighted the nurses union have taken your case, you could never have been dismissed in the UK but I am not familiar with the employment law in Australia. You should start to feel stronger in a while. Please let us know how it goes. Now its all just time. Best wishes. Autumm

Maggie, hope you got to the hospital and they are fixing you up with IV steroids in bursts each day... 1000mg a day is not unheard of, to stem the tide... WE need you out of bed, and i am so sorry that she waited so long. Often when i get bad, if the nurse or staff won't give me an emergency appt, i go get labs and go sit in the dr. office till they see me... someone will miss an appt and i get in that day!!! Not my favorite way but some times it works...
Hubby goes with me for this to confirm that it is way way worse. Once the docs get to know you, they usually respond quickly when in a flare. then i try not to be insistent with anything else, so i am not seen as uppity. Just i knwo when i am going down hill fast.

Okay to ask what do i do for a normal not feeling well call?? and what do i do when i know i am going down hill fast, what is the code word, or how do i get you to call me back??

Best of luck to you. Prayers and healing energy coming your way,
shawna

Maggie. Shawna gives great advice. She is a trained. Jose like you. Hospital seems a good idea. Autumm

I think Autumn meant to say i am a trained RN. Hope you are getting good care. It stinks, but the hospital may indeed be the best place to be when we are going down hill fast...
Sending you healing light and Positive thoughts, for a fast turn around.
Shawna