MASS. General Hospital Boston

Bones, joints and muscles
1

Hi All,

Recently I promised to come back and share my experience at MGH Boston, where I had a Thursday appointment with Rheumatology.

MGH is beyond compare, I already knew that. Going from the suburban dope of a rheumatologist I was working with to the expert and his Fellow at MGH just highlighted why this hospital is a Center of Excellence. (My family has been MA General patients for many different conditions. They saved my husband, who had a Dissecting Aortic Aneurysm at age 48.)

My doctor is a GCA Specialist, but able to treat all things rheumatology. And he does. He had a complete grip on my story of MS, Exzcema, GCA and PMR, through the electronic records. He did not say one negative word about my prior care. Class Act.

He has a lot to work on with me, and put pain first in line. The worst pain is in my hips and it started with the relapse. One simple hug of the hips and glutes and he knew it is bursitis. And right then and there he did cortisone shots to the outside joints (didn’t send me down the road!). I will go back next week for shots to the back joints. (I cannot remember the names of which is which, but you know what I mean I think.) He’s hoping that my 3 month high dose Botox treatments to my legs, for MS Spasticity, to be done this Thursday, will help with getting my gait straighter and thus help with the bursitis. The cortisone is just starting to kick in today, I look forward to tomorrow!

Once the Bursitis in the hips is resolved, he will have a plan for my screaming lower back.

All the while, he will be SLOWLY tapering me down from the 60 mg of Prednisone I am presently on. And, he will be educating and communicating with me weekly through his Fellow. What a novel idea. LOL.

He does want me to stay with the pain management center that has been treating me a with low dose Butran pain patch, as it can help with the bursitis (holy cow is that a painful thing!!!). He does not want me on it long-term and I don’t want to be on it long term, but if it helps for now, and he approves, then it’s OK with me.

So there I am. A good care plan in action. Am totally disgusted at having been slammed into a relapse in my first two months of this journey, due to over aggressive tapering by Rheum #1. But he’s in the rear view mirror now and I’m moving on. Slowly. I still cannot walk very well and pain is a constant partner. But, I feel hopeful that this will not always be the case.

Fingers crossed.

Only tough thing about MGH is getting there, Boston traffic is now officially beyond ridiculous. Best way to get there is via commuter rail then either MGH shuttle bus or UBER from North Station.

2

Angela, how happy I am for you. Being a Rhode Islander, I have great respect for MGH. But must admit some what envies, you can get to MGH, Good Luck now put on that smile and all will be WELL!:slightly_smiling_face:

3

Thank you Michdonn! I am so lucky to be near the Boston Hospitals! For my MS care, I go to the Partners MS Center at Brigham and Women’s. People come from all over the world for these hospitals.

Your Rhode Island Hospital is nothing to sneeze at, right? I think that’s where our son did a rotation in Kinesiology. Now he’s a web developer making 10x what he would have made with a PHD in health care. He can live anywhere and work remotely. Right now he’s living the dream in the Rockies.

Phew that smile is a great big assignment. Living with MS for 40 years, I know pain. But, I have NEVER known pain like this. Huh! I kinda like MS now. I have transderm patches, I shall use tiny slivers to pull a smile on so my face remembers how. That’s a good start.

Thank you for your support, and I hope you are well today.

4

Great story. My PMR is being treated well, but the other problem of screeching-level pain was never really diagnosed. I bounced around doctors in southern Boston (Dorchester) and Milton for a horrific 2 years.
I actually live on the Red Line (the subway line with a stop near MGH) and can get to MGH very easily if I can walk or use my Xootr (kick scooter) a few blocks! If that nightmare comes back, I think it is time to tell my wonderful doctor that, although he is a PRINCE, for referrals on this issue I need to go to one of the hospitals that have made Boston a major medical center.
Thanks for convincing me of what I should have known! Snapper
PS I spent most of my adult life in the Rockies- Montana and Wyoming- and still miss the area.

5

Hi Snapper. HMMM yes hop on the red line and get to MGH! Since we come from the North shore, perhaps we should hop the green line in Melrose and skip the commuter rail, although that comes right through out city

You didn’t mention where your pain was located, however there is a unique type of bursitis that occurs in the cervical and/or lumbar regions of PMR patient’s spines. If you google PMR and Bursitis, you may find what I am talking about.

Along with my hip bursitis issues, I have the lumbar variety, in the lineup for treatment. The bursitis in my hips did coincide with the screaming relapse and was really messing up my messed up MS walking, so the doctor decided that was high priority although he isn’t connecting it to PMR he admits the timing is suspicious. Due to the specialist’s new baby, I am one month late for the Botox treatments on my legs. Too many scrambled factors.

And I agree, the Rockies are a very special place to be. I am not traveling now but usually go out a few times each year.

Hope that you are well today and are headed towards some pain relief

6

Angela, I doing marvelous, PMR pain free, since January, living in the mountains of NM, working out at the YMCA 3 days a week, walking 4 miles a day at 3 mph 3 days a week get ready for another great ski season. I am a ski instructor at our local mountain, Pajarito. So please believe me I do have a smile on my face, start smiling when I started walking a little over 2 years ago. Eileenh and some others got me moving, thank God for the forum. Smiling helps, some others on the know the story. Think positive, be active and smile. Have a good bowl of clam chowdah for me!:slightly_smiling_face:

7

That is great news, Angela, and I am so glad your faith in this Rheumy has been justified. I hope the treatments will help ease your pain and you will be able to get back to more of your hobbies. I remembered that you are finding it difficult to knit and sew especially because of the pain in your hands and wrists. You mentioned that you are still knitting but it will be good to vary this with sewing. My very best wishes for your progress.

8

Sacroiliac joints?

Sounds a good start - a name to know about for anyone who can get there I suspect.

9

Hello. I am also from RI. Don’t know anyone that has dealt with pmr except in this group. Dr says I don’t have pmr anymore according to my blood work. Just had cat scan of SI joints to see why I am having pain and stiffness in hips and down thighs. Also aching across right shoulder down my arm. Chiropracter says she can straighten me out. Hoping Dr doesn’t tell me I have something worse like ankylosis spondinytis!! I am a very active 60 year old.

10

What may be best about your new doctor is his acceptance that more than one thing is wrong and is trying to give you integrated care. Most of the doctors I have seen reacted according to the principle “when you are carrying a hammer, everything looks like a nail,” looking at my symptoms, saying “maybe this could help,” and doing whatever procedure they normally do. I went to a physiatrist, who is supposed to look at function and the whole person… and he gave me the shots his new practice specializes in.

Thanks for the information on the spinal bursitis- I had never heard of that. I’d been given shots for trochanteric bursitis, but no one mentioned that there were bursae in the vertebral column. I wonder how that is diagnosed…

All the best to you, I hope this all works really well for you.
Snapper

11

Normal range bloodwork doesn’t mean you don’t still have PMR! Wish they’d get the hang of that!