After reading several discussions today it became clear that a few of us EMers also suffer from some sort of Auto Immune disorder, diseases that effect the nervous system or other systemic diseases.
I was tested for MS in 2007 when I got my EM diagnosis but it was ruled out. I was later mis diagnosed with Fibromyalgia, then central pain sensitization. More recently the fibro has been ruled out and MS diagnosed from new lesions on the brain and also from a positive lumbar puncture.
I was wondering if others with EM have other diagnosis that could either be primary or secondary to the EM?
Not so far in my case. Both orthopaedics and neurology have said ‘not me Guv’ so I’m being referred to rheumatology now. I guess they might do more tests and find an underlying condition. I’m convinced my EM symptoms are secondary to something else but dont know what that is yet. Fingers x’d the next consultant will find out what the underlying cause is.
I was told my EM was secondary fairly early on in my dx but was told that EM symptoms usually precede any primary symptoms and often drs don’t ever find out what it’s secondary to. My MS dx came about 6 or 7 yrs afterwards. Fingers crossed they will find out what yours is secondary to.
Gourav, there are loads of different auto immune diseases with lots of different tests used to dx each different one. My twin sister has Lupus, rheumatoid arthritis and raynauds, each has different symptoms but all auto immune.
I am being treated for an undifferentiated auto immune disorder. They can't tell for sure what type it is but they are confident it is auto immune in nature. They are leaning more towards Behcetts but my blood tests have been inconclusive. I Started with many other systemic problems a few months before Painful EM started but I had mild EM for quite a few years before I just didn't know it at the time.
After trying a few different Autoimmune meds we have found one that significantly reduces my other symptoms just not my EM. I was hoping EM would get better when the other symptoms did but so far no such luck. My doctor doesn't feel comfortable saying the EM was caused by Autoimmune or if it is just bad luck acquiring both but I think they may be related.
I was looking back at my medical history and found out I had been diagnosed with Complex Regional Pain Syndrome on top of my fibromyalgia and diabetes, this is what the pain management doctor put down. I have had so many different conditions and diagnoses; for example.. restless leg syndrome, deep vein thrombosis, sacro-iliac joint dysfunction, herniated L4-L5, diabetic neuropathy, and hyper relexes in the legs and feet, (this one from a neurosurgeon). So I am a lot like you, how do you bring them all together into one diagnoses and who makes the diagnoses?
I have been tested for common autoimmune disorders and they have all been negative. My sed rate is always 1-2 points elevated. (Not impressive). My neurologist (an em specialist in boston had me try high dose prednisone (70mg daily for a month) and i had few flares while on it. Came back as soon as I weaned to 30mg. She felt from my response to the med my em is autoimmune. She said most younger and middle aged women have an autoimmune cause.
I had a dx of RSD a few years before EM started and I hear that RSD is similar or same as CRPS. I also got a fibro dx a couple of years ago but my new MS neuro is not convinced it was ever fibro but MS symptoms all along.! It's such a complicated tangeld mess trying to work out what, where, when we got everything it seems.!
gtrembley said:
I was looking back at my medical history and found out I had been diagnosed with Complex Regional Pain Syndrome on top of my fibromyalgia and diabetes, this is what the pain management doctor put down. I have had so many different conditions and diagnoses; for example.. restless leg syndrome, deep vein thrombosis, sacro-iliac joint dysfunction, herniated L4-L5, diabetic neuropathy, and hyper relexes in the legs and feet, (this one from a neurosurgeon). So I am a lot like you, how do you bring them all together into one diagnoses and who makes the diagnoses?
Mt dr told me that EM often preceeds primary autoimmune disorders by about 8 years but they don't always find out what the primary is. Mine I'm assuming is the MS because the symptoms all started at the same time as my EM.! (but like I said its an assumption because probably never really know) Alina Delp said:
I am being treated for an undifferentiated auto immune disorder. They can't tell for sure what type it is but they are confident it is auto immune in nature. They are leaning more towards Behcetts but my blood tests have been inconclusive. I Started with many other systemic problems a few months before Painful EM started but I had mild EM for quite a few years before I just didn't know it at the time.
After trying a few different Autoimmune meds we have found one that significantly reduces my other symptoms just not my EM. I was hoping EM would get better when the other symptoms did but so far no such luck. My doctor doesn't feel comfortable saying the EM was caused by Autoimmune or if it is just bad luck acquiring both but I think they may be related.
No, the doctors haven't offered immunoglobin transfers as of yet. My immune panel was actualy negative. THe only thing showing up in blood work is elevated SED rate but nothing specific to any particular Autoimmune. They still believe I may have an autoimmune disorder just based on the elevated SED mixed with the systemic nature of my Symptoms and are treating me with Azathioprine. I have been on this med for about 6 months now and have seen improvements in my other symptoms just not the EM. I have recurring sores in my nose , mouth, scalp and vagina. All have been tested with no nown cause. I have gastrointestinal issues with slow digestion and abdominal pain diagnosed by eating radioactive eggs and watching it go through the digestion process. Along with Joint pain all over body and strangely intermittent neurological problems. My neurologist said that isn't possible but I know it happens! From strange sensations and tastes to numbness tingling not related to EM or Raynaud's and a couple of bouts of crazy high blood pressure lasting a couple of months at a time and only when I am standing/ Walking just to return suddenly and with no intervention to my normal ( 117 ish over 72 ish) even stranger when I have the weird blood pressure spikes it is the lower number that is the real problem reaching 118 or so. Know one can explain why or how this can happen!!!!!
I am regularly called a medical mystery by my doctors. My rheumatologist says that as much as 20 % of patients can have negative autoimmune panel but still have an autoimmune condition and feels that treatment without official diagnosis is the way to go and it has helped so there you go!
I will ask them about it at my next appointment and see if they think it might help. Thank you for the advice tizzy. Sorry to ramble so much. It's in my nature if you haven't noticed already :)
Take care,
Alina
Tizzy said:
Alina - have your doctors considered immunoglobin transfer ?? I have seen two other people in posts about to try this and if your immune panels are positive ,who knows. Seems it is often not a cure ,but certainly considered an immune modulator . Some anecdotal evidence of children responding and a few adult Em cases. Didn't copy articles, as I am too disorganised but you can try to google ./>
jen said:
I have been tested for common autoimmune disorders and they have all been negative. My sed rate is always 1-2 points elevated. (Not impressive). My neurologist (an em specialist in boston had me try high dose prednisone (70mg daily for a month) and i had few flares while on it. Came back as soon as I weaned to 30mg. She felt from my response to the med my em is autoimmune. She said most younger and middle aged women have an autoimmune cause.
No, the doctors haven't offered immunoglobin transfers as of yet. My immune panel was actualy negative. THe only thing showing up in blood work is elevated SED rate but nothing specific to any particular Autoimmune. They still believe I may have an autoimmune disorder just based on the elevated SED mixed with the systemic nature of my Symptoms and are treating me with Azathioprine. I have been on this med for about 6 months now and have seen improvements in my other symptoms just not the EM. I have recurring sores in my nose , mouth, scalp and vagina. All have been tested with no nown cause. I have gastrointestinal issues with slow digestion and abdominal pain diagnosed by eating radioactive eggs and watching it go through the digestion process. Along with Joint pain all over body and strangely intermittent neurological problems. My neurologist said that isn't possible but I know it happens! From strange sensations and tastes to numbness tingling not related to EM or Raynaud's and a couple of bouts of crazy high blood pressure lasting a couple of months at a time and only when I am standing/ Walking just to return suddenly and with no intervention to my normal ( 117 ish over 72 ish) even stranger when I have the weird blood pressure spikes it is the lower number that is the real problem reaching 118 or so. Know one can explain why or how this can happen!!!!!
I am regularly called a medical mystery by my doctors. My rheumatologist says that as much as 20 % of patients can have negative autoimmune panel but still have an autoimmune condition and feels that treatment without official diagnosis is the way to go and it has helped so there you go!
I will ask them about it at my next appointment and see if they think it might help. Thank you for the advice tizzy. Sorry to ramble so much. It's in my nature if you haven't noticed already :)
Take care,
Alina
Tizzy said:
Alina - have your doctors considered immunoglobin transfer ?? I have seen two other people in posts about to try this and if your immune panels are positive ,who knows. Seems it is often not a cure ,but certainly considered an immune modulator . Some anecdotal evidence of children responding and a few adult Em cases. Didn't copy articles, as I am too disorganised but you can try to google ./>
jen said:
I have been tested for common autoimmune disorders and they have all been negative. My sed rate is always 1-2 points elevated. (Not impressive). My neurologist (an em specialist in boston had me try high dose prednisone (70mg daily for a month) and i had few flares while on it. Came back as soon as I weaned to 30mg. She felt from my response to the med my em is autoimmune. She said most younger and middle aged women have an autoimmune cause.
Since you responded so well to prednisone are they considering treating you with immune suppressants even without official diagnosis or are you still taking the prednisone? My doctors like yourself believe I have an autoimmune condition but so far the blood work has been normal other than SED rate elevation. I have seen improvement in my non EM symptoms and that has helped a lot. I keep hoping it just takes more time on meds to see EM improvement if it is caused by autoimmune. My doctor says it is possible to have both and not necessarily be caused by the autoimmune.
I wish you the best in figuring this out.
Take care,
Alina jen said:
I have been tested for common autoimmune disorders and they have all been negative. My sed rate is always 1-2 points elevated. (Not impressive). My neurologist (an em specialist in boston had me try high dose prednisone (70mg daily for a month) and i had few flares while on it. Came back as soon as I weaned to 30mg. She felt from my response to the med my em is autoimmune. She said most younger and middle aged women have an autoimmune cause.
I am also convinced it might be auto immune related. I myself have EM, small fiber neuropathy, Behcet's, h/o TIA, osteoarthritis, raynaud's, etc....still ruling out MS & RA (2 out of 3 past RF tests were positive). My birth mother passed away from Lupus & her mother (still alive) has myesthenia gravis & I have 2 more relatives w lupus arthritis as well as early cerebral aneurysms; not to mention all the cancer that runs in my family! Needless to say this is ALL on the maternal side of my family, which makes things worse.....gotta be some sort of genetic connection!!
Thank you dkel9307. And I hate to say it, I didn't even mention all of my medical issues! I was told I am a medical mystery & that when I pass away, I need to donate my body to science!! Gotta just laugh. What else can you do when you are 41 but feel 71?? :)
I have benign fasciculation syndrome. It’s another weird, rare syndrome of the peripheral nerves. They are hyper excited all the time…even when sleeping (or more accurate, trying to sleep). I twitch. I twitch all over the place and the twitches can turn into cramping. It comes with restless legs. It’s hard because when I fall asleep the muscles relax but the nerves never do. That’s when I’m jolted awake with a terrible cramp. Often times I get 2-3 at a time. I’m wondering if it’s related.
Hi; it's believed that I have either Autoimmune Inner Ear Disease(AIED) or Meniere's, which has been suspected to have an autoimmune component.. I have suffered from a severe vestibular disorder for the past 9 years (it disabled me in November, 2005) called Superior Canal Dehiscence Syndrome (SCDS); think of it as kind of like Osteoporosis on the Semicircular Canals.. The canals get holes in them, and all Hell breaks loose..
After 4 surgeries to repair my right ear (left ear issues have not been addressed yet), it was discovered during post-op testing that I was experiencing loss of function in both ears that seemed to be following a Meniere's like pattern, so I was diagnosed with Secondary Endolymphatic Hydrops: secondary vestibular disorder to the SCDS..
The weird thing is, when I began having issues with my feet at the beginning of April, I was put on 20 mg's of Prednisone, 3 times per day, and suddenly my balance improved! No more brain fog, nystagmus, dizziness, bouncing vision field, vestibular ataxia, or nausea! It was sheer heaven, or would've been if my feet and hands had responded as well as my ears had..
When I was admitted to the hospital on April 19th, they took me off the steroids, and we watched me deteriorate over 2 or 3 days; all the good that the steroids had done for my balance was gone.. After we figured out I had EM, I was put back on the steroids, this time, 20 mg's, 2 times per day, and 3 days later, my vestibular symptoms improved again. This piqued their curiosity. They said if it were Meniere's, they thought I shouldn't have an almost complete remission of my symptoms from what they've read, and they now strongly suspected AIED. My Rheumatologist would like for me to go to Boston and have the work up tests performed to see what's really going on..
At least I know if I do have AIED, there are treatments available to me! :)
Yes, 20 mg's twice per day.. Doesn't do much for my feet, but they were afraid of me falling with my bad balance, and figured it was worth trying to at least help me with that.. Still having pain in my feet, with some swelling and discoloration.. RUDE AWAKENING this morning: blankets were on my feet and toes got warm.. UGH! :( My husband and I joked that we could take care of them with Jack Daniels and tin snips.. I'm thinking this is going to be an "ice the feet" kind of day..
Oh, before I began the Prednisone on April 9th (pre being hospitalized), I had some testing done as it was thought I was having an autoimmune type of reaction (Mom's sister has RA, and Sjogren's. Lupus runs in family, both sides: I tested negative, YAY!), and my C-reactive protein, sed rate, and haptoglobin all came back high, and a 4th came back as elevated, but we couldn't find the culprit.. It definitely points out that something isn't right, possibly in the direction of autoimmune.. Maybe it's the EM that caused these results or the AIED? We'll find out, I hope! The Prednisone helps with the balance, thankfully.. I don't have to "toddle through the house" by touching walls to help me walk.. I'm grateful that at least I have THIS going for me..
dkel9307: I'll take ANY relief from these health issues I can get! lol
Hope you're all doing well..
Tizzy said:
That really is a strange group of symptoms ,but it seems EM pops up in an awful lot in immune disorders so nothing surprises me now! Are you still on prednisone for your vestibular problems? I have read that prednisone is rarely useful in EM,so that kind of fits your experience. Are you able to mobilise ? Also do you suffer any swelling in your feet as well as Em pain. Happy to give general physio advice if that helps - take care Tizzy