Elevated sedimentation rate

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    • #117789
      SandraP
      Participant

      I’ve had an enormously elevated sedimentation rate since I developed CIDP, but my current neurologist says it has nothing to do with my CIDP. He says inflammatory neuropathy does not raise the sedimentation rate. Has your neurologist ever expressed an opinion on this? Mine hasn’t suggested how I can find out what IS causing my sky-high sed rate.
      Sandra

    • #117790
      Ausvoltz
      Participant
    • #117796
      SandraP
      Participant

      This article doesn’t answer my questions about CIDP. Is it an inflammatory disease? If so, why doesn’t it affect the sed rate?

    • #117807
      Walter K
      Participant

      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.
      Walter

    • #117812
      SandraP
      Participant

      Walter, multiple EMGs by three different neurologists have shown severe demyelination of the nerves in both my legs. By the time I was diagnosed with CIDP, I had lost 80% of the nerve function in my legs. There’s no doubt that I have severe neuropathy, and my first neurologist said my very high sed rate reflected that. Now I have a different neurologist who wants to blame everything on my back. Bad discs in my lower back can’t strip the myelin off the nerves in my legs. And if the high sed rate isn’t related to inflammatory neuropathy, what is causing it? He threw out (by email, which is how he’s treating patients during the pandemic) a couple of horrific possibilities, but I don’t have the symptoms of either. Then he more or less shrugged it off and said he doesn’t know, leaving me to wonder what the hell is wrong with me. I’m going to get an appointment with a good rheumatologist who knows inflammatory autoimmune disorders.

    • #117814
      Walter K
      Participant

      Hi Sandra
      Thanks for writing back.
      Nobody would doubt that you have severe neuropathy.
      I wrote to you to let you know that there is hope.
      Especially in your case, which I believe is very similar to my own. I have also lost measurable nerve function of 80% in some nerves in my legs.
      Lets be open minded and as an example look at conditions which cause symptoms and EMG results we both experience like Transverse Myelitis https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726
      Basically what this means is yes, there are conditions which can strip the Myelin of your nerves, call it CIDP or otherwise.
      The last 3 doctors and practitioners I saw all agreed that continuous aggravation of a nerve can cause enough inflammation which if left untreated can cause the symptoms I have, including reduced nerve conduction. They proved their theory by reducing my symptoms by 30% so far.
      I believe your new neurologist may be on to something, you just need to find the right person to treat it.
      If you look at your history you may have to agree that the potential is very high that your DR is correct and it is caused by your back. Your CIDP starting after having a pelvis operation is just too much of a coincidence. Having CIDP or neuropathy does not rule out that it is caused by the back, hip or pelvis and in your case that may be in your favour because the cause could be treated and potentially reducing your current symptoms by a great margin.
      I am seeing my neurologist today and shall update about future developments.

    • #117815
      SandraP
      Participant

      I have had back problems since my twenties and didn’t develop CIDP until I was 70.

    • #117842
      BryanF
      Participant

      Haven’t posted in awhile, but I have this same issue. My CIDP is seemingly getting better, but then I get horrible back pain and spasms. Of course it makes it difficult to function and my strength is affected. Also, when my back acts up, my CIDP seems to get worse.

      My GP did some blood tests and my sedimentation levels were extremely high. If I have it right, cancer, arthritis, and auto immune diseases can cause high levels of inflammation.

      My GP gave me a pack of prednisone and a muscle relaxer that lowers inflammation. Both seemed to have helped immensely.

      Definitely seems like there is a missing element in our treatments.

    • #117870
      Walter K
      Participant

      Hi Bryan
      Very interesting
      Can you please share what the name or active ingredient of the muscle relaxer is? Have you ever had any physical back problems?
      I still don’t have my back pain under full control. It is not a sharp pain but a widespread dull pain that feels like inflammation and it is hot at times.
      Still waiting to see a neurosurgon about it but it can take up to a year I was told so I need to find multiple ways to control it until then.
      At the moment my other therapists are on holiday so I rely on ice treatments which helps a lot when I get a big ice block rubbed on my back for up to 20 minutes.
      Prednisone kept my back pain and inflammation down for the last 5 months but since I got off that the inflammation came back.

    • #117871
      BryanF
      Participant

      Zanaflex.

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