Reply To: Elevated sedimentation rate
Sandra, Sandra, Sandra…
Thank you for bringing this up! You are a good observer.
Let’s try and get to the bottom of this.
I have read a number of your posts also here https://forum.gbs-cidp.org/forums/topic/have-you-relapsed-and-recovered/
where you tell us:
– My neurologist, who is considered one of the best in our area, got the idea that my worsening weakness and nerve pain, etc., was all due to my lower back problems, and for the better part of a year he’s done nothing to help me.
– in summer of 2015 I suffered major fractures in my pelvis.(My sacrum is now held together by a mess of screws and bolts.) I was told I would be “back to normal” in three months, but I never recovered. I believe the fractures and the surgery/anesthesia (which lasted half a day) triggered CIDP. I grew weaker, lost my balance, started falling, developed terrible nerve pains in my feet and legs. My doctors blamed all of it on the fractures and the nerve damage they caused in my pelvis
As Ausvoltz correctly linked to a mayoclinic article an elevated sedimentation rate has to do with inflammation which you observed since the beginning of being diagnosed with CIDP.
The fact that neurologists do not consider inflammation or other problems in the body especially in the spinal area to be in any relation with the CIDP disease whatsoever is very sad but reflects my own experiences.
I have suffered spinal inflammation since the start of my disease and it just so happens that it is in the area where had a disk injury a few years ago which is bulging and causing pain. Not enough for the MRI report to say it could be causing my symptoms which are very similar to yours.
In medical terms there only seems to exist the possibility of a stenosis which is visible and pressing on the nerves and then causing symptoms.
For example my report reads: Multilevel degenerative disc disease with facet osteoartropathy and small right paracentral disc protrusion juxtapose to the right of S1 nerve root, spondylosis is noted without central canal stenosis or neurocompressive lesions. Increase in kyphosis but no compression fracture seen.
Summary: NO DEFINITE EVIDENCE OF DEMYELINATING DISEASE IN THE BRAIN OR SPINAL AXIS
Ok that sums it up for the Neurologists. I have seen 5 of them and told them about my spinal inflammation and all of them ignored it but instead were quick to prescribe Gabapentin, IVIG and make use of the range of immunosuppressants available (Myfortic in my case). All of it made things worse for me as soon as I started the treatment. The only partial relief I ever found was from Prednisone. As soon as I lower the prednisone the inflammation in my back starts again.
I had my stops at the emergency hospital because I was getting too weak and symtoms progressing too fast just to be told they could not help me. It really reminds me of your story Sandra. Same exhaustion and weakness too.
I have in the last 2 weeks seen two diffent practitoners, one remedial massage practitioner and one osteopath.
I had icing treatment of the spine. After 4 hours my weakness was reduced by almost half, could walk normal again and could even hold by teacup with one hand for which I had to use two hands hours before because I was too weak.
The same effect with the ostopath who aligned my spine and worked on some pressure points. I limp in with a hot inflamed spine and walk out with a normal temperature spine, 30-50% improved strength and balance. Also nerve pain and twitching have reduced by a similar rate.
At the moment the inflammation is still present and not under control I am however convinced that this is the cause of my problems which present as CIDP.
It may also explain why I do not respond to IVIG and immunosuppressants.
PLEASE PLEASE PLEASE go and see an osteopath and someone with experience in remedial masssage and other alternative therapies. Conventional medicine does not address these issues.
There are some articles online which also state that CIDP or CIP can be caused by inflammation which support this thesis. There are also some youtube videos of practitioners claiming they can help without giving too much information about how but they are all talking about inflammation in the body.
I was extremely sceptical until a friend introduced me to a remedial massage therapist which changed my life from being devastated and being rejected from the emergency hospital to being able to walk a little better and gaining strength.
So far it was worth every cent I spent.
If it does not cure me it has at least provided me more relief than anything else I tried and got me out of a very desperate situation only 2 weeks ago.
I hope this helps someone.