July 11, 2021 at 8:53 am
When you are talking about the spinal inflammation here is what I did:
– Cold showers in a thick stream running down the spine from the top of the head or neck down. You can also use a waterhose on low volume
– some days I put 5k Ice in a bathtub plus 20 or 30 liters of water and lay in it for 20 min.
– I had the best results from ice treatments directly applied to my back. Cut open a frozen bottle of water then use the block to gently slide the block up and down the spine but not too high in the heart area. Of course you need someone to apply it for you…
– It is an inflammation so any medications to reduce inflammation help as in prednisone (short term) or Curcumin. Also consider diet changes and cutting out sugar and carbs as much as you can. Some oils like fishoil and so on also assist to reduce inflammation.
– check out the motivationaldoc on youtube he has a few recommendations to reduce inflammation
– I am using a medication called Piracetam 800mg. It was first prescribed to me by a Thai neurologist and I was on 3 a day. I was not feeling any progression during the time I took the medication and an actual improvement from my starting symptoms. When I ran out of the meds the progression started. Since I now (2 1/2 years later) started taking one a day again the progression mysteriously stopped and my spine started cooling down. Its ok now since about 2 months and my spinal inflammation stopped. Not sure if it was coincidence.
I cannot say for sure this is caused by the piracetam or not but had it happen twice that it helped. I have to say my observation is no medical proof by any means and I would not want to give anybody false hopes. I do find however it would warrant further research. Piracetam is prescribed in Thailand and perhaps in some other countries for a variety of reasons, in my case it was for neuropathy symptoms and it worked for me. I read online it is used up to several thousand mg a day which I find is an overkill. 8oomg a day do the trick for me at the moment.
I recommend to see a number of specialists and not only rely on the first one. In my last MRI a small fistula was discovered in my spinal canal which could also have something to do with it.
In your case it may be worth having a look at Transverse Myelytis as well.
All the best and let us know how you go.
WalterJanuary 12, 2021 at 4:22 am
I could not agree more!
I am not even sure I have CIDP and would not be surprised if a high percentage of us here have been misdiagnosed.January 9, 2021 at 10:27 pm
I am 83 kg and started on 50mg. The most I took was 75mg for a few days and then reduced back.
I never heard of pulsing corticosteroids.
I did not have any noticable side effects from prednisone but had a great appetite and gained a few kg’s. Also with the last blood check the blood sugar levels were too high and it can cause you to become diabetic.
I your other post here https://forum.gbs-cidp.org/forums/topic/lower-leg-and-feet-muscle-tightness/
you described your symptoms more in detail and I did not find that prednisone helped me with these.
Here is how prednisone helped me:
– reduction or elimination of all inflammatory processes in my body (best at above 40mg at my weight of 83kg) I suffered inflammation in the back and one foot joint, all were gone for 5 months but now reappeared after coming off prednisone.
– minor reduction of twitching in the legs
– extreme increase in energy. I was completely exhausted with not much energy before prednisone. My neurologist always said that would not be normal for CIDP or neuropathy to be exhausted which I find hard to believe. It must have been the inflammation in my back which caused the exhaustion. My believe and that of a few other practitioners is that the inflammation also caused most of my symptoms if not even the neuroathy.
– reduced or eliminated swelling in my legs which I had after receiving IVIG for a week
It may not be for everyone or for every situation. For me it was worth a try and helped me learn more about my disease and my body and pointed me in other directions now to further decrease or eliminate inflammation in my body. The good thing is that it does show to be effective within hours and you can stop at any time if you find doesn’t help.January 9, 2021 at 8:36 am
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.January 9, 2021 at 4:37 am
I have exactly the same symptoms as you Pammy, decreased sensation, altered sensation,muscle tightness, tension, no toe curling. The tightness and tension started for me slowly after getting IVIG for a week but cannot be sure I can blame it on that.
Prednisone did not improve the tightness/tension at all for me even though it helped in other ways.
My neurologist even suggested it may have been caused by the prednisone.
It is too early for me to say since I only came off it a few days ago.January 8, 2021 at 4:52 am
I agree with Mike to some extend.
Prednisone is probably the esasiest accessible and should take the edge of it right away after 12 hours. Of course doctors always want to get you off it a.s.a.p. but it should get you through the worst over the next few months.
If your current condition is covid related then you could expect it to last several months since I heard a lot about people having a long recovery time so it seems to hang around quite a bit.
I found a dose around 50mg very effective. Lower than 40mg does not do as much.
Other drugs like Cellcept can take a long time to work (months according to my immunologist) and may not do the same.
I believe a general practitioner can prescribe Prednisone, at least that is the case here in Australia. Just shop around.
Of course Plasma exchange would be great but I underdstand it must be very difficult to get these days.
I just got off Prednisone this week after being on it for 5 months.
My own experience is ( and this time my neurologist even agrees) that neuropathies can flare up quite a bit during or after infections, so no surprise to hear you are going through a rough patch.
I hope you get better soon.
It would be interesting to hear how people with CIDP react to the covid vaccine…December 7, 2020 at 10:31 pm
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.December 4, 2020 at 5:09 pm
I live in Australia.
I never used it.
I had a look online and can see that they still sell here, I am sure you can find it on Google. I believe it is all made in China and that you may be able to source cheaper alternatives branded differently.
My own experience with massage:
Getting a general massage or even foot rub aggravates my nerves to the extend that I suffer for weeks until it calms down again.
Proceed with caution. Personally I would not use it but perhaps you need to make your own experience.
One thing that helps is to see an Osteopath or a good remedial massage therapist (not for a general massage) to whom you tell what your issue is and they can pinpoint where to touch and apply pressure to certain points, stretch, massage or align. This recently helped me to recover from a very grim situation to a point where I see hope, light and positive change.December 4, 2020 at 7:20 am
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.
WalterDecember 2, 2020 at 6:10 am
I have slight partial numbness/tension of my left cheek, starting near the nose and reaching down around my neck and then down the spine. It started with a light tickle and weakness in that spot about two years ago. Also have weakness and tension in my spine all the way up to the scalp, (was told that this is not CIDP like). Had a slight loss of strength in my left hand, mainly thumb which now spread to both arms.
The whole story started on the left two middle toes and spread to both legs and both arms now.
Not 100% sure If I have CIDP or another form of neuropathy but the last diagnosis was CIDP 10 months ago and there is some evidence to back it up.
Have tried IVIG which has made it worse from the second day of infusion by increased muscle twitching , itchyness and spread of numbness in my feet. Two monhs later we tried Myfortic at 3 x 360mg a day which made everything so much worse that I could not walk or work anymore a few days into the treatment. Things have eased off a little since I discontinued the Myfortic but still don’t want to walk more than 100m (I was working full time and on my feet for 12+ hours every day until I started Myfortic).
My experience is so far:
A). Some of the medications or treatments may not have the desired effect
B). Most if not all the medical professionals I have so far consulted were just guessing and trying.
C). Most of them did have a different opinion as to what typical symptoms of the disease look like and did not include some of the symptoms I observe or even some of the symptoms of people within this forum. Sometimes I mention one symptom to a Dr. which is not on their tick list and it feels like I was trying to cheat the system. On the other hand I keep reading how diverse the disease really is with too many variants and symptoms to properly diagnose.
D). I have seen 5 Nerologists and one Immunologist over the last 3 years and told each and every one of them multiple times that I can feel I have an inflammation in my spine. My spine is hot at times and when it gets hot I also feel a progression in my other symptoms. Not one of them found it neccesary to further investigate this issue since the MRI report said there is no visible evidence that it could be caused by my spine and the blood tests also showed no evidence.
E). I am now seeing several different alternative practitioners and an Osteopath to help with the spinal issues and pushed my GP very hard to get a referal to a spinal specialist. I had mild relief from it after one session.
I feel that anybody showing symptoms other than whats on the doctors list should not get discouraged and/or brushed off. Be persistent and persevere. After all from my experience the doctors don’t know too well themselves. ( Warning: This would not be a good starting line for a coversation with your specialist…)
Looking at the dosage of your medication perhaps side effects could also be investigated.
Please let us know how you go from here.
WalterNovember 2, 2020 at 8:00 am
The Curcuminoids I use here in Australia may be different brands to what you can buy in he US but they all do the same trick if they have the right concentration of the two main ingredients in each tablet namely Curcuma longa extract equiv to dry rhiz 15.8gr containing Curcuminoids 600mg, also Piper Nigrum extract equiv to dry fruit 140mg containing piperine 5mg.
I used Natures Own, Healthy Care and another brand depending what is on special at the time and I never noticed a difference in performance between any of them. I started taking one a day initially since that is what they say on the box but take 4 at the moment and believe I can up that a lot more. I also heard people using fresh Curcumin but it is not my taste.
The Herb oil I use is called Medicated Oil Wangwan Brand and I bought a few bottles in Thailand. The active ingredients are per 100cc, Plai extract 35cc, Methanol 7cc, Methyl Salicylate 10cc,.
Again I am sure there are many equivalents available in most countries.
Here a couple of things I would like to add to my previous post:
Don’t: Don’t drink alcohol, not even so called alcohol free beer since even that contains traces of alcohol which seems to agitate my nerves and trigger a new onset of the disease just when feeling a little better.
Try not to stimulate the old nervous system too much. That includes tea, coffee and Coke, too much computer or screen time.
I feel that apart from the damage in the peripheral nerves there is quite a bit run by the central nervous system.
That reminds me at some stage in the beginning of my journey when I experienced something that felt like some wires just fried in my brain. If I didn’t know better then I would say that is what happened. Ever since the things went downhill.
The consumption of alcohol while doing several hour long gym style workouts may have played a role…October 31, 2020 at 8:33 pm
See below a list of things that help me sometimes and also what causes things to flair up and make it worse.
Don’t forget everybody is different and the disease changes all the time.
I find relief from:
– going to the beach and cooling down in the salt water for 10 – 20 minutes. This provides me with the longest lasting improvement up to several days. I try to do it as often as I can.
– getting enough sleep
– stop watching TV or reduce as much as much as possible.
– use Chinese herb oil when the pain gets too strong. Gently apply, do not rub too much.
– Use Prednisone 40mg or more to settle down inflammation. In my case it does not completely stop the progression of the disease though.
– cold showers up to 20 min.
– Protein supplements and Curcuminoids 600mg or the strongest possible with piper nigrum
Things to avoid:
– Massage. I find this really sets off my whole nervous system and causes pain and irritation throughout the body even when I a get a light foot rub.
– Too much exercise. This is a difficult one. We need to to as much as we can to maintain health and muscle strength but every bit over the limit is causing the opposite for me. I started exercising a few months after my diagnosis 2 years ago and it seems it set off the disease to come on with a vengeance.
– Carbohydrate foods. I feel an instant increase in symptoms within minutes of a high carb meal or sugary food to the extend that after 30 min I can hardly walk while I was walking ok(-ish) before.
Both lists may be incomplete and subject to change. They may work for me but not for everybody.
I also read your post here https://forum.gbs-cidp.org/forums/topic/new-to-cidp-i-think-2/ and I see many relations between what you describe and my own experiences, including the unusual instant sudden onset. I believe that only a few here can fully rely on their initial diagnosis.
It would be great to continue to hear how you are going.
It would also be great to have a register of experiences, symptoms and remedies accessible in one place for others to look up. Perhaps one day someone will do that…October 22, 2020 at 9:26 pm
Being the same as when you were diagnosed could be a blessing. Many of us including myself are dealing with continious decline. Some more rapid than others. There is also always the question of whether the initial diagnosis of CIDP was correct or not. Doctors are only guessing. At least you can look forward to your current symptoms to ease up at some stage even though it is very hard to go through this part.October 22, 2020 at 6:56 pm
I only had one course of 5 treatments and stopped since then about 5 months ago. No intention to start again. Currently on Prednisone 30mg down from 50 and Myfortic 360mg x 3 a day.
Prednisone seems the most effective for me and works within hours to calm down inflammation. Yours could also be a short term reaction hopefully, nobody knows that is the problem. I also remember a biy of an itch for a few days but not as bad as yours. It also wore off after a few weeksOctober 22, 2020 at 6:03 pm
Hi Sandra, sorry to hear that. I did have bad reactions to Ivig (Intragam) myself. One of them was swollen legs. It took about 4- 6 weeks for symptoms to start easing and about 4 months to actually get better. It basically needs the same time as it takes for IVIG to wear off under normal circumstances.