Chronic Inflammatory Demylinating Polyneuropathy & Pots

[MNsue]

A few weeks ago there were a number of post's regarding neuropathy. I currently get IVIG infusion once every two weeks to control my neuropathy. I have noticed a number of people with similar symptoms to mine and hope others can benefit from looking up Chronic Inflammatory Demyelinating Polyneruopathy. It is very hard to diagnose, and it does not show up on an MRI and and can be present without blood markers.

I have debated if the side effects of IVIG were worth it. I believe it has kept me from having further problems. My POTS is much better, but I still have issues with weakness from time to time.

I hope this is helpful to some.

Rhonda

[pat57]

Thanks Sue.

That was interesting.

[Science girl]

I am in the process of exploring chronic inflammatory neuropathy. Is there a difference between chronic inflammatory neuropathy and chronic inflammatory demyelination neuropathy? If there is no demyelination is it easier to reverse?

I'm wondering is chronic inflammation is the source/cause of a lot of POTS cases. I have read that chronic inflammation can cause neuropathy...technically POTS is autonomic neuropathy. I know I have inflammation in my body and that if I can keep this under control the POTS is better. I have high CRP and ESR. I get rashes, gastric reflux, flushing, and now have found out i am vit d deficient (can be caused by inflammation) so my bones are soft and i have joint inflammation. I take a mast cell stablizer ketotifen which helps with some of the neuropathy symptoms like numbness, tingling, burning in my arms and legs as well as the more classic mast cell problems. I think trying these medicines is really helpful not just for symptoms but by slowing down the inflammation you can pinpoint triggers etc. On this medicine i have seen me aggrevate my back, then the flushing started followed by a bad POTS day. This lead me to a bone specialist who is taking care of my osteomalacia (vit d bone disorder). I have found that my period is a major trigger and it has dawned on me that the source of my chronic inflammation maybe due to endometriosis. I had this 14 years ago but since having my three daughters in 3 years it seemed to help the endo but my period pain is getting worse. I new POTS got worse with menstration so didnt make the connection at first and I had a problem with my pelvis with my last pregnancy and had a lot of nerve pain in my back so only having this extreme pain for three days a month seemed reasonable! Funny what we get use to. Thing is the pain is getting worse and longer every month and I'm seeing that non-gyne problems also flare with my period like chest pain and shoulder pain. I'm getting checked for endometriosis on my diaphragm (symptoms: shoulder pain, middle pain pain, shortness of breath, chest pain all linked to period) and endo on my sciatic nerve or other peripheral nerves. Since so many of these symptoms are related to POTS I never consider them to be caused by something like endometriosis. It will be interesting to see if the endo has actually spread outside my pelvis and is causing all this grief.

I think that if chronic inflammation can cause neuropathy and neuropathy can cause dysautonomia then it would stand to reason that any chronic illness that causes chronic inflammation may be the cause of POTS. Ie hyper mobility, endometriosis, lupus....and that in these cases treating the inflammation must be a part of managing POTS.

Thanks for your post!

[ramakentesh]

Thanks for dropping in - yes indeed some POTS has appears to have this as a primary etiology. Some small fiber neuropathy can head into this condition.

For some very weird reason I cannot explain, endometriosis is more common in POTS, NMH and CFS.

[issie]

They are thinking that endometriosis and mast cell issues are connected. I had endometriosis and also have HyperPOTS, MCAS and EDS. I think there are quite a few of us with all these things and there seems to be a connection.

Issie

[Science girl]

To me the association between endometriosis and these disorders is understandable. Endometriosis is a chronic inflammatory problem and effects the pelvic nerve pathways. Both can be causes for dysautonomia.

I have wondered however if this is a chicken or egg scenario. An immune problem could cause endo and POTS or endo could cause chronic inflammation and then POTS. Either way treating the endo and controlling the inflammation needs to happen. What I'm seeing with myself is that I can put up with a lot of pain and so I do (my periods are worse than giving birth and theres no rest between contractions!) but if I stay on top of the pain (inflammation) I don't have as many POTS days. We are so often warned not to over do the NSAID that we just 'manage' with minimal pain relief. But if I have in my mind I'm not just dealing with this pain I'm protecting my nerves by reducing inflammation then I'm more likely to take the drugs I cleanly need. If I don't see the connection I don't bother and put up with the pain not taking into consideration the bigger picture.

I feel like the connection between inflammation and dysautonomia is established but not often consider in treatment. It's vague. There maybe better and safer ways to deal with the inflammation or reduce it in the case of endo with surgery with the goal of also reducing the dysautonomia.

Does this make any sense? I guess I'm a little frustrated at the compartmenteralisation of the various problems we have instead of taking the wholistic approach that maybe it's not coincident that all these disorders are happening simultaneously.

[Science girl]

They are thinking that endometriosis and mast cell issues are connected.

This is what I mean by chicken or egg. Mast cells have been found in higher numbers in endometriosis lesions. It is thought that mast cells are necessary for the process of implantation and establishment of the new endometrial tissue. The mast cells change the extra cellular matrix making it ideal for implantation. This maybe why endometriosis grows in some people and not others. One theory of the etiology of endo is that of retrograde bleeding where you bleed into your pelvic cavity back through your Fallopian tubes during menstration. This happens for up to 90% of the female population but only 10% get endometriosis. A difference in mast cell expression could account for why endo grows in some of us. If this is true then the best treatment would be to get the endo treated and couple this with mast cell stabilization or immune suppression to stop it returning.

I guess the problem is we sit between theory and practice. Just because the theory is come quite far it doesn't mean that treatment changes. And even if it has changed within specialist circles your average gynecologist probably won't make the link.

[issie]

I understand what you mean. I too took a whole lot of NSAIDS - RX strength and that damaged my liver - as I have issues with breakdown in my P450 pathways. The only way I could stand the pain was to take them though. It was horrible and my periods unbearable. Life revolved around what time of the month it was. I had a hysterectomy after a whole bunch of clean-up surgeries. Each clean up brought more adhesion's and more pain. Finally, my 8th and last was a complete hysterectomy at age 36. I should have done it sooner --but, really had wanted kids that I never could have. I had a really good surgeon and a ghost surgeon that went through my entire length of bowel to make sure that nothing was missed. There was also a Urinary doc on stand-by in case there was endometriosis in that area that might require surgery too. I had POTS back then and didn't know it and the surgery took a very long time. Later, learned they nearly lost me - as my bp plummeted. They were all extremely anxious - as they had a very hard time stabilizing me and when I got to the room --the nurse wouldn't let me sleep because my bp was so low.

I've always worked on inflammation and had to work on pain levels (I have EDS too). But, that really hasn't helped my POTS. What it did do is get me out of the daily pain. And I sure don't miss having my cycle. The hot flashes are none to fun though and mine started the day after surgery. I finally had some estriol compounded and that along with Red Clover - settled out my hormones.

I always heard that you could take progesterone and it would correct endometrosis --but, I never could tolerate it. It made me have hot flashes and made me miserable. But, the above things worked great after my surgery.

If you want more details that I can't put on public --PM me.

Issie

[ramakentesh]

deleted

[Science girl]

Rama: you are probably right that my theory is not full proof, I don't claim it to be.

Back to the discussion, To answer your question about endo being an inflammatory disease. It is a poorly understood disease with many theories of its origin, one being it is an autoimmune disorder. But the fact remains, whether inflammation is causative or not, inflammation is what causes most of the pain and scaring. The abnormal epitopic growth and epigenetic causes may be just the start...the cyclical bleeding and subsequent chronic inflammation is what causes most of our symptoms. We are not likely to be able at this stage to treat the underlying misunderstood cause but we can treat inflammation and the wider implications this has on the rest of the body.

I guess I don't get why in treatment we are not looked at holistically. If we are dealing with inflammation or autoimmune issues causing inflammation why is this not considered when dealing with dysautonomia. This post started with CIDP which is caused by autoimmune issues. If you have endo (or any other immune related problem) and POTS then is it not likely that CIP or CIDP is a possible link in the two disorders?

[ramakentesh]

Sorry I was more just highlighting questions that we don't yet have answers to.

Edited March 26, 2013 by MomtoGiuliana

[Science girl]

NMSue: how did you get diagnosed with chronic inflammatory demyelination polyneuropathy? You said it's difficult to diagnose. I guess this means that doctors also don't think to investigate it. If it was suspected can your average neurologist diagnose it?

Thanks for your post, I think it is really important. Do you have another autoimmune condition?

Rama: thats cool. Sorry I misread your tone. Maybe an NZ/Aussie clash lol!

Science girl

[arizona girl]

Hi welcome to the forum science. You might not hear back from the original poster as they have not been online since 2011. You could try personal messaging her, as she would get an e-mail notification.

Rama's one of our critical thinkers, he knows he can be a bit blunt. He is one of our better researchers and is good at giving the other side of the picture. He means no harm, as he said. He also has his theories, which I don't always fit the research out there so far.

I myself have autoimmune and primary immune deficiency and do get ivig to treat that. I also had petchial endo/pcos/colon rupture. Am a bit hypermobile. I believe my dysautonomia symptoms which include pots, orthostatic hypertension and near syncope happens as a result of an autoimmune attack on my small fiber nerves (autonomic nerves). I have had some improvement of symptoms with treatment. I am also treating hashi, udct, lichen and a gene defect called mthfr and with the addition of those treatments. My recent lipid and inflammatory tests have greatly improved. My crp, esr, mpo and lipids have all dropped by a lot. Still waiting on my thyroid profile.

One of my docs said the immune system is like a circle once there is damage in one area it can effect any or all components of the rest of it. Really depends on you genetics and where you are weak. Who would think one person could have some many different conditions. I personally think they are all connected some how.

So welcome, this is a safe place, and we do moderate the forum. If there continued to be a problem one of our moderators would have stepped in.

[Science girl]

Thanks for the input Arizona girl. It's nice to know it is safe here and chats are moderated. I haven't seen a neurologist yet. I'm going to get my endometriosis checked and then go from there. I have not had my POTS treated by a specialist as there are none in Belgium. I have had contact with some members from the Netherlands who I will pursue their contacts if I don't get any advised referrals to a neurologist here from either my bone specialist or the gynecologist. I was hoping that treating the endo might calm down my immune system and therefore the POTS and other neuropathy and inflammation symptoms. At the moment I'm really disabled but I feel like the POTS is only an added complication to what else is happening. But until I had the positive tilt test no doctor would even look into my case. Now I have got some mast cell stabilizers from an allergist who agreed that clinically it looks like i have some mast cell involvement and that meant the bone specialist would test me for osteomalacia (which the tests seem to confirm but I still need the follow up appointment). Because the mast cell meds are calming down my symptoms it was really obvious that my period made everything worse but they are not your normal endo pains but coming from my sciatic nerve and possibly my diaphragm. Since these are supposed to be rare sites for endo I thought/hoped they might be the source of my issues.

Needless to say I'm exhausted at trying to unravel this medical mess.

[ramakentesh]

yes i do have my own theories - sometimes ridiculously speculative. But I do love Arizona... Lovely place.

[arizona girl]

Me too! Hey, what is throwing me in that last set of research docs you posted is the following: I have doc sfn, I have doc rise in norepi on standing. However I drop low with bp/hr when supine to the the point of brady and hypotension at times and as you know I go up w/ bp/hr on standing. I almost never get dizzy unless motion or a near syncope is involved. I do get the hyperandregenic symptoms that grubb describes. With a lot of pain and discomfort the longer I'm on my feet. I'm always on the look out for a place to sit and get my feet up. I type lying down.

So, I didn't fit any of those abstracts and am wondering if there is another subset I'd fit into. Obviously the cvid and autoimmune issues are a factor. I know you have some autoimmunity too!

Any thoughts about why I might not fit?

[Science girl]

You explain my experience to POTS exactly. On my bad days my bp is always lower when lying 90/58 and then i stand it it goes up to 140/90 with a pulse of 120-140. I have had doctors say you might not have POTS because I don't have low bp on standing. They said the increase in heart rate is my body trying to stablise? I do know I sometimes have low bp on standing (85/60) but this has been only I few times and then I do calapse in a heap.

I would also love to know where I fit.

[ramakentesh]

Ha doctors make me laugh. If your blood pressure drops significantly when you stand then it would not be pots. If it is relatively stable or rising then according to the recent consensus statement its pots.

[issie]

Yes, if you drop upon standing - more likely OI issues. When your bp drops the body automatically raises your pulse rate to bring your bp up. (Unless there is pure autonomic failure of multiple system atrophy.) You should get elevated heart rate with a drop in bp. (Personally, I question trying to stop the heart rate hike at this point - because the body is trying to equalize the problem.)

Part of the criteria for POTS - is either level bp or increasing bp upon standing. The orthostatic part comes in later. There is still a drop --but, not immediate upon standing. The drops can be very subtle drops too ---don't have to be drastic and still causes the faint feelings or complete fainting. Our bodies are super sensitive to any change with our bp's. Over exaggerated response --possibly compensatory.

Issie

[Science girl]

What should your heart rhythm look like on a ECG at rest? I thought this was also often normal in POTS but the same doctor said that normal is not normal for POTS. I thought this was why it is often missed because you need the tilt test to see any abnormality.

[ramakentesh]

In POTS there can be normotensive syncope - cerebral vasoconstriction or faulty cerebral autoregulation.

[Science girl]

Hey just found this article on endometriosis as a neuropathic disorder. What do you think? Could explain the link to POTS?

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0031758

[ramakentesh]

Definitely.