EM or Peripheral Neuropathy

In my more lucid moments this last week I have been researching EM. Bearing in mind my poor circulation due to my lifetime of smoking I have looked up Peripheral Artery Disease (PAD) and this led me on to Peripheral Neuropathy (PN)

The symptoms of PN appear very like those of EM, which begs the question, are they part and parcel of the same problem? PN is a lot more common than EM and I may be barking up the wrong tree.

I shall have to ask my doctor for his view - bearing in mind he had never heard of EM.

Anyone had this as a diagnosis at any time before their EM diagnosis?

Peripheral neuropathy is a descriptive term, for the neurological symptoms which occur when nerves in the peripheral areas of the body(hence, feet and lower legs) are damaged. It can be caused by many things, such as nerve damage due to Diabetes, decreased peripheral circulation, and EM as a few. These things either decrease or change the circulation and/or damage nerves, but I think that the mechanisms that cause EM are different than what causes circulatory problems with smoking, but I could be completely wrong. My point is , the result, symptoms of peripheral neuropathy are much the same, whether caused by EM, or one of the other things. But the mechanisms that get a person to that point may differ a great deal. That is my take on what I have been reading. I think there are many differences also, based on what I am experiencing, and what I have read and heard about typical peripheral neuropathy. I have heard in many cases, those persons wih peripheral neuropathy have decreased feeling in the area, but early symptoms, before it progresses may be severe pain. I have not read that EM gets to that point. I could be off base.



Kathryn said:

Peripheral neuropathy is a descriptive term, for the neurological symptoms which occur when nerves in the peripheral areas of the body(hence, feet and lower legs) are damaged. It can be caused by many things, such as nerve damage due to Diabetes, decreased peripheral circulation, and EM as a few. These things either decrease or change the circulation and/or damage nerves, but I think that the mechanisms that cause EM are different than what causes circulatory problems with smoking, but I could be completely wrong. My point is , the result, symptoms of peripheral neuropathy are much the same, whether caused by EM, or one of the other things. But the mechanisms that get a person to that point may differ a great deal. That is my take on what I have been reading. I think there are many differences also, based on what I am experiencing, and what I have read and heard about typical peripheral neuropathy. I have heard in many cases, those persons wih peripheral neuropathy have decreased feeling in the area, but early symptoms, before it progresses may be severe pain. I have not read that EM gets to that point. I could be off base.

Hello Kathryn,

I don't think you are off base with your reply. I have done some more reading myself and agree with what you say.

I am still waiting to have a proper diagnosis. Until then the amiltriptiline is helping and I am more comfortable. Unfortunately it has depressed my breathing which doesn't help as I have emphysema.

I hope you find some relief from your symptoms very soon.

I am a bit confused about this as well. My initial diagnoses was idiopathic small fiber peripheral neuropathy with parasthesia, and I believe this diagnoses is still valid as many of my symptoms are not symptoms of EM (e.g. spontaneous & brief burning pain on the back of one ankle, with no redness, or sudden, brief warmth down a leg or on the top of a foot, or a squeezing sort of pain on one side from fingertip to shoulder).

I have read that small fiber peripheral neuropathy can cause EM. However, something is also causing the peripheral neuropathy, and if that cause is unknown it is labeled "idiopathic." Not sure, but I think the difference between EM and peripheral neuropathy is the vascular involvement. The small fiber nerves are sending wayward signals to the small blood vessels.

Yes, I was diagnosed with peripheral neuropathy several years before developing symptoms of EM. My underlying problem is a 34 yr history of Crohn's disease. I don't absorb the vitamins and nutrients my body needs due to most of my small intestines being removed. It's a double whammy to have both PN and EM. God bless you

hi all,

I am new here and find such comfort to know others are dealing with the same things as me. I was sort of diagnosed with peripheral neuropathy. in as much as my pain doc, (who sees me for FJA and rupture at C4-C5 and a L5-S1 annular tear) said I had PN but that it was irreversible and that the test was very painful. I have always been confused about the conection between PN and EM as well.

My docs re now checking to see if I have a undiagnosed Crohn's connection also

I am also saddened but comforted others have been left to fend for themselves re the dx of EM.

Mshell

dizzy,

I have small fiber PN, and the test to confirm the diagnosis was not very painful. They stick you with very small needle like things, but it's just a prick, and I would suggest you have the test. If indeed you do have PN, they're drugs I take for the nerve pain that you could also take to take the edge off. It is irreversible, but with the right kinds of medication it's tolerable.

Good luck.

Judy

dizzy said:

hi all,

I am new here and find such comfort to know others are dealing with the same things as me. I was sort of diagnosed with peripheral neuropathy. in as much as my pain doc, (who sees me for FJA and rupture at C4-C5 and a L5-S1 annular tear) said I had PN but that it was irreversible and that the test was very painful. I have always been confused about the conection between PN and EM as well.

My docs re now checking to see if I have a undiagnosed Crohn's connection also

I am also saddened but comforted others have been left to fend for themselves re the dx of EM.

Mshell

Judy,

Thank you for your response. I will defiantly talk to my doctor next month about confirming the dx. It is comforting to chat with someone who has been there. :)

mshell

mshell,

You are welcome. Keep me posted on your dx.

~Judy

dizzy said:

Judy,

Thank you for your response. I will defiantly talk to my doctor next month about confirming the dx. It is comforting to chat with someone who has been there. :)

mshell

I am amazed at how many of us have had a diagnoses of SFN before developin EM. I quite often get a warm wave down my right leg. It's quite pleasant if it did not remind me that something is wrong with my wiring. ;-(

I have only had SFN for about 3 years. I feel it's not looking too good but all we can do is soldier on.

My main complaint just now is that the meds I take for the neuropathy (anti-epileptics) have given me brain fog and memory problems. I continually forget words for even simple things and sometimes come out with a word that has no bearing whatsoever on the subject and that can give me a laugh.

I have the same problem with the brain fog and memory. It's embarrassing at times, especially around people that don't know it's related to the drugs I have to take. My hubby, close friends and family, have my permission to finish my sentence for me if needed. It's like the word is right on the tip of my tongue, but I can't think of it for anything!!

Alison said:

I am amazed at how many of us have had a diagnoses of SFN before developin EM. I quite often get a warm wave down my right leg. It's quite pleasant if it did not remind me that something is wrong with my wiring. ;-(

I have only had SFN for about 3 years. I feel it's not looking too good but all we can do is soldier on.

My main complaint just now is that the meds I take for the neuropathy (anti-epileptics) have given me brain fog and memory problems. I continually forget words for even simple things and sometimes come out with a word that has no bearing whatsoever on the subject and that can give me a laugh.

Boy, it's really great to speak to others who understand! :-) To know it's not just me getting dottled. My mother really sees it as I can be just as forgetful as her. I live alone and my family are not very supportive, too busy with their own lives and that's a good thing. My mum is on her last legs some distance away.

I noticed this brain fog as soon as I started the meds and it is hard not to get down about something that is essential. I have recently been diagnosed with severe sleep apnoea too and have tio have the dreaded cpap machine ;-( but I feel as though my body has been in hibernation as I have been sleep deprived for many years. I was reading that sleep deprivation can sometimes make changes in the brain of early Altzeimers but I am not going down that path lol

I am feeling some energy returning so hoping to get myself going.

It's just good to know that we can share and uplift one another.

So glad you invited me to this group. I'm not in much of a mood to talk/share right now, but when the time comes ~ I'll share more than you probably want to hear!!! LOL! I have Polycythemia Vera and the EM is a follow-on - very annoying, but I see here that my issues may well be minor, by comparison. YET, the pain is sometimes almost unbearable and I've given up wearing shoes...which means I've also given up - going out except for absolutely necessary events - such as my PCP and Hematologist app'ts. My major goal is to stay off medications for either issue for as long as possible, so I just take aspirin and even that, I take sparingly. I have a phlebotomy every 6-8-10 weeks, depending on the need/labs at the time of app'ts., so I am "clinically anemic" - I guess that's the same as Induced anemia...but whatever it is, it leaves me pretty much exhausted and I'm sure there are other things I don't allow to surface. I am just recovering from a nasty stomach virus and we laugh that "the monkey's somewhere in SA must have caught it from the cruise ship tourists and it came to me via the bananas" - since I have little to NO contact with the outside world!!!! LOL! But, my husband and son DO and I'm sure that's the link....I am blessed to have an amazing family who take such good care of me in every way possible. I could not survive otherwise, so my heart aches for those who do not have a good support system. Well, seems I was into talking more than I thought! I look forward to coming here often - I don't have a whole lot of good advice/information - just my own experience with EM and that I have been dx'd by my hematologist - reluctantly, but there's no denying what's going on and we know it is a tag-along to PV. I THANK the moderator at MPDchat, "Judy" in Cambridge, England, for advising me two years ago to step up the aspirin - it made a huge difference. Then I read last summer that soaking the feet in cold water IS NOT RECOMMENDED as it can cause the ulcers and can also lead to amputation!!!!! I only share that as I know some doctors actually tell people to do that!!!! SO, any information that is medically valid reagarding that practice should be shared - with references, perhaps so more people are warned of the potential danger - and doctors can actually communicate w/each other on our behalf. And YES! It IS wonderful to be able to share with each other and to hopefully be uplifting....as we all have our "days" for sure. Whew! I'm done - for now.

I am exactly the same with the meds, I constanly 'lose' words and also say completely the wrong word too. I was talking to my daughter a little while ago and ended up saying umbrella instead of letter... She just laughs at me. It does get worse when on high doses of meds but I also notice I get it when either in lots of pain or feeling sleep deprived. There have been embarrasing times when I've phoned up for a hair cut and ended up asking them how much the charge for wash cut and blow.....(fill in the blank and it wasn't dry) Not something I would EVER say to anybody so no idea where that saying came from.

Alison said:


My main complaint just now is that the meds I take for the neuropathy (anti-epileptics) have given me brain fog and memory problems. I continually forget words for even simple things and sometimes come out with a word that has no bearing whatsoever on the subject and that can give me a laugh.

hahahaha that gave me a right laugh but I know EXACTLY what you mean ;-)

Some of the words I come out with are so obscure....nothing to do with the conversation at hand...

Thanks Laura for making me laugh out loud. What did the hairdresser reply?

I have the same trouble with words and even though I can see it in my minds eye it just won't come out of my mouth. Senior moment of senile decay?

Still chuckling!

I still laugh about it now years later, I remember hearing the receptionist laughing but I lost my bottle and hung up, to make matters worse I was at my mums and she almost wet herself she was laughing so much. I didn't go back to that hairdresser for about a year. I am going to have my hair chopped today, luckily nobody there remembers it was me.. One day I might have the nerve to remind them :)

I’m slightly different but before EM I was diagnosed with Nerve Damage to the sensory nerves in my feet and hands which funnily enough is my EM effected areas! … I also for the past 3 years now have nerve damage in my eyes. 3 years ago I developed an ulcer on my cornea and had to get an operation to protect the cornea so I now have a big scar across it and have slight blurry vision and find it impossible to get further than the third line on eye testing charts! No glasses nothing will help but back to the point! … During the op they saw that the nerves in the back of my eyes are showing nerve damage and are breaking away which they can’t explain other than EM, so it’s very interesting.

All so, my brain is just a scattered mess! I’m 17, and should have a young mind, I was always good at remembering but now I struggle!. When I talk I muddle up my words… A LOT! and when talking I raise my voice a lot as I’m trying to ‘push’ all my words out quickly before I bore the person or if it’s a lot to say before I forget! I all so really struggle with concentration! If I have a flare mostly I can’t concentrate at all, but even if I don’t, my mind goes blank a lot all so, it really frustrates me!

Dear Alison welcome to the…um…CLUB!

Dear Lauren, try not to be scared. It’s the drugs, girl, not you. I figured I’d have to make a choice…the brain or pain. I chose not to have the pain but I can’t find words, etc. I don’t care. The Lyrica helps the pain. I’m sorry you’re having to go through this dastardly disease as so young an age. IT AINT FAIR!