Two for the price of one

General General CIDP Discussion
1

Hi All,

Wondering if anyone has had a similar experience to me? My CIDP was diagnosed in September 2013. Main symptoms were limb heaviness and weakness, falls, dropping things, visual changes, continence issues, arthralgic pain in my arms. After a 5 day induction of IVig in November I continue to have fortnightly infusions.

Coincidentally in August 2013 I started limping to protect my right foot with no identifiable injury precipitating it. An MRI showed a recent fracture in my ankle, and avascular necrosis in which bone tissue starts dying off after its blood supply is compromised. The falls were all 8 - 10 months before any pain arose. Diagnosis was later amended to bone marrow oedema syndrome in which the bone becomes abnormal and osteoporotic leading to insufficiency (of bone) fractures. It is self resolving over 3 -9 months with no treatment other than protected mobility.

A walking boot, crutches and occasional wheel chair allowed my ankle to heal over 6 months but 9 months later I remain largely immobile because as my ankle became stronger, my right knee developed the same problem The diagnosis then became migratory bone marrow oedema syndrome. Then as my right knee became stronger and I was about to return to work, my left hip and knee developed what seems to be the same problem, to be clarified by MRIs later this month.

As each new joint has flared up I have experienced a 10 day flare up of the CIDP symptoms and I am convinced the conditions are linked.

Research got me to the point of understanding that a particular protein that we make in bone and kidneys (osteopontin) becomes elevated in both conditions (and in multiple sclerosis, rheumatoid arthritis and some other conditions). One study proposed that manipulating osteopontin levels might relieve symptoms. This led me to finding and speaking to a medical researcher in the relatively new field of osteo-immunology who agrees that bone health can also be affected by inflammatory neuropathies but so far the research is in early stages and not linked to particular conditions and has no clinical applications.

While my neurologist and orthopaedic doctor are sympathetic they don't agree that the conditions are linked - their take is that I have two rare but unconnected conditions. I have now been referred to a rheumatologist who I will see for the first time in mid May and am hopeful of gaining a better understanding.

All of this continues to seriously impact my mobility, work capacity, financial and general well being. I'm thinking that although the bone marrow oedema syndrome is rare as is CIDP, it is unlikely that I am the only one affected in this way.

Has anyone else's mobility problems been related to bones rather than motor weakness?

Thank you for wading through my story.

2

I was diagnosed in 2010. My symptoms were being controlled with IVIG (Gamunex)for approx. 2 1/2 years . In 2011 I had knee replacement surgery which set the CIDP off big time. I had the typical needles and fire in my feet, then I lost all feeling from my knees down. My muscles in my thigh would not release. They were hard as a rock making physical therapy tuff. As a result my leg only has partial movement. I am currently on Prednisone with numb feet, issues with my hands and major fatigue and occasional nerve pain. Not sure if everything got fired up due to knee replacement or the surgery its self. Hang in there hopefully you this will pass. You may talk to your Doc about stem cell transplant. I had it done January 2013. It didn't do much for me but it may work for you. Everything seems to be a crap shoot. The only thing I know is I sleep like a baby.

Breeze

3

I don't know anything about your bone conditions, however, being on the CIDP sites it seems quite common to have other autoimmune disorders along with CIDP.

4

I was gonna say the same thing. I also have thyroid problems, which my endocrinologist says are probably caused by an immune system issue. If you read this forum and others, you will find that there are a fair number of people with CIDP who also have some thyroid problem, and I suspect they are related.

Unfortunately, knowing this doesn't help at all with treatment. But if I were a doctor and someone presented with CIDP, I would be on the lookout for other immune problems.

Michelle1966 said:

I don't know anything about your bone conditions, however, being on the CIDP sites it seems quite common to have other autoimmune disorders along with CIDP.

5

Breeze, where did you get the stem cell transplant done? In Chicago?

6



gslm said:

Breeze, where did you get the stem cell transplant done? In Chicago?
Yes, at Northwestern in Chicago.
7

Thank you all for your thoughtful replies. Kind regards, Gina

8

Primary bone marrow oedema syndromes
Sanjeev Patel1

  • Author Affiliations

1Department of Medicine and Rheumatology, St Helier University Hospital, Surrey, UK.
Correspondence to: Sanjeev Patel, Department of Medicine and Rheumatology, St Helier University Hospital, Wrythe Lane, Carshalton, Surrey SM1 3AA, UK. E-mail: ■■■■■■■■■■■■■■■■■■■■■■■■■
Submitted 25 January 2013 revised version accepted 22 August 2013
Abstract

MRI scanning in patients with rheumatological conditions often shows bone marrow oedema, which can be secondary to inflammatory, degenerative, infective or malignant conditions but can also be primary. The latter condition is of uncertain aetiology and it is also uncertain whether it represents a stage in the progression to osteonecrosis in some patients. Patients with primary bone marrow oedema usually have lower limb pain, commonly the hip, knee, ankle or feet. The diagnosis is one of exclusion with the presence of typical MRI findings. Treatment is usually conservative and includes analgesics and staying off the affected limb. The natural history is that of gradual resolution of symptoms over a number of months. Evidence for medical treatment is limited, but open-label studies suggest bisphosphonates may help in the resolution of pain and improve radiological findings. Surgical decompression is usually used as a last resort.

Key words
bone marrow oedema oedema bone bruising osteoporosis regional transient MRI bisphosphonates iloprost core decompression
© The Author 2013. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: ■■■■■■■■■■■■■■■■■■■■■■■■■■■■

I thought this might help and there is an email address to contact

9

THANKS for your post as I have had three broken bones in the last 2 yrs and the last one was my right lower leg in three places and I was just standing in front of my bathroom sink. I broke both bones in my lower leg just above my ankle and the smaller leg bone just below my knee. And I was doing nothing but standing there. I had no prior pain but have had many falls. I was diagnosed with CIDP in Sept 2011, I woke up one Sat morning and was unable to walk it took me 9 plus months to walk again. I did have a nerve biopsy taken from my right leg to confirm the diagnosis.

To repair my leg I did op for the surgical fix as this way I know the possibly of breaking it again are extreme low. At the very least give me something to ask my nuro about. You are correct about the financial as well as general impact this disorder causes. I have been unable to work since 9/2011 I was able to collect state disability for 12 months (state of CA) and have applied for Soc Sec Disability but do to my age (under 50) and the rare condition I am having to fight for my benefits, I did the first application on my own by once I received the first denial I hired an attorney and I have just submitted my 3rd or 4th letter from my Nuro and a function report (as far as what I can do know vs what I could do prior to becoming ill). So I am hoping that they will approve this time around.

10

THANKS for your post as I have had three broken bones in the last 2 yrs and the last one was my right lower leg in three places and I was just standing in front of my bathroom sink. I broke both bones in my lower leg just above my ankle and the smaller leg bone just below my knee. And I was doing nothing but standing there. I had no prior pain but have had many falls. I was diagnosed with CIDP in Sept 2011, I woke up one Sat morning and was unable to walk it took me 9 plus months to walk again. I did have a nerve biopsy taken from my right leg to confirm the diagnosis. I also have major mobility issues - I am having to rely on a walker and a cane all the time and this is very frustrating. I am so use to being able to work and do what I need to do and these days I lucky if I can feel any part of my feet when they don't hurt, on fire or feeling like someone is taking a nail gun shooting nails into the tips of my toes....

To repair my leg I did op for the surgical fix as this way I know the possibly of breaking it again are extreme low. At the very least give me something to ask my nuro about. You are correct about the financial as well as general impact this disorder causes. I have been unable to work since 9/2011 I was able to collect state disability for 12 months (state of CA) and have applied for Soc Sec Disability but do to my age (under 50) and the rare condition I am having to fight for my benefits, I did the first application on my own by once I received the first denial I hired an attorney and I have just submitted my 3rd or 4th letter from my Nuro and a function report (as far as what I can do now vs what I could do prior to becoming ill). So I am hoping that they will approve this time around. The chances of me returning to any gainful employment is wishful thinking. I just do not have the ability to work at this point my body just can't handled it.

11

Thanks Yoshi. I was beginning to think I was the only one this had happened to. From what I understand, insufficiency fractures happen as a result of normal activity on abnormal bone, for example standing or walking. My guess is that something about the inflammation in CIDP causes some abnormality in the bones. My other guess is that this may be a rare complication of a rare disorder and that science hasn't quite caught up yet.

How did your doctors explain your fractures? Are you walking ok now?

I live in Australia which seems to have a very different benefit system to the US.. I am on unpaid leave from work but hopeful of returning once I can walk again, even if it's very part time. In the mean time I am lucky to receive interim sickness benefits which is just keeping me afloat.