[Pyr2]

Hello, I have posted here before and I suspect will be a regular poster in the next few months. I will try to break my questions up. I really could use some advice (and a big hug, but I will let my family take care of that!) although right now no one knows what to do with me.....

I am a 46 yr old female. 16 yrs ago I had a bout of tingling sensations. Neuro chalked up to prewedding jitters - EMG done, MRI only a t2 spot. Then 15 yrs ago after birth of my daughter, life exploded. Immediate onset of anxiety feeling and burning sensations in muscles and tingling everywhere. It was horrible. So much testing done including bone marrow biopsy. Only thing found was a polyclonal IGm indicating infection/inflammation but they said you had a virus, move along with your life. And so I did.

Throughout the years, more weird neuro tingles and vibrations, but nothing bad until 2 years ago. Then the world exploded again, but MUCH worse. Cranial nerve and autonomic attacks - almost like migraines, spasms with heart rate elevations, head pressures, "teething" feeling, feel like gums swollen, like someone pulling tongue down throat, dizziness, nausea, and the tingling and muscle aches back again. Ive had trigeminal, glossopharangeal and occipital. And the twitching and random muscle burns and tingles and vibrations everywhere. This has gone on for TWO YEARS. TWO YEARS of a million doctors and tests. How can this be? Still have that polyclonal IgM and now an antinuclear antibody but not postiive on any autoimmune test except anticardiolipin antibodies. A well known lyme doctor says I have lyme and definitely reactivated epstein barr virus. EMG last year says no damage, but no biopsy taken. Have been taking lyme meds but feel like thats inaccurate and Im not getting any better.


So here are my questions
-Anyone with an infectious cause to their neuropathy? I understand I can't cure EBV so does that mean this will just get worse and worse
-I am going to get the EMG repeated. I believe I have some muscle atrophy in calf as well. I guess my question is this - I definitely have neuropathic pain, but not sure about neuropathy b/c I have no real deficits - meaning, my feet are not numb, I have heat/cold sensation, etc. What does that say? Or is the level of damage/no damage not important. I can still run, workout, wear heels, etc.
-As the fun continues, I have begun to get repetitive sleep onset breathing issues. Like I just stop breathing or breathe too shallow and wake with chest pain and a dying feeling. That has me scared that something degenerative is going on with my brain! Or can neuropathy impact your brain and central nervous system as well. This was all preceeded by months of weird palpitations like my heart was short circuiting. So there is definitely an autonomic component as well.
-Having compression nerve sites as well. LIke when I rest my elbow on table.
-Finally, can PN present with crazy amounts of anxiety? Thats how this all started. Like someone flipped a switch. And no psyc drugs did anything for it. Only made it worse. I know it sounds either autoimmune or infectious, right. Could it have been dormant for 15 years?
-Is it possible to have cranial, automatic and pn at same time?

Sorry, Im just so scared. I need this to end. The nightmare the symptoms produced in 1999 scared the buckets out of me and when they returned in 2013 and haven't gone away ......

Sorry its so long. Im rambling now. Any advice!?

[icelander]

Originally Posted by Pyr2

Hello, I have posted here before and I suspect will be a regular poster in the next few months. I will try to break my questions up. I really could use some advice (and a big hug, but I will let my family take care of that!) although right now no one knows what to do with me.....

I am a 46 yr old female. 16 yrs ago I had a bout of tingling sensations. Neuro chalked up to prewedding jitters - EMG done, MRI only a t2 spot. Then 15 yrs ago after birth of my daughter, life exploded. Immediate onset of anxiety feeling and burning sensations in muscles and tingling everywhere. It was horrible. So much testing done including bone marrow biopsy. Only thing found was a polyclonal IGm indicating infection/inflammation but they said you had a virus, move along with your life. And so I did.

Throughout the years, more weird neuro tingles and vibrations, but nothing bad until 2 years ago. Then the world exploded again, but MUCH worse. Cranial nerve and autonomic attacks - almost like migraines, spasms with heart rate elevations, head pressures, "teething" feeling, feel like gums swollen, like someone pulling tongue down throat, dizziness, nausea, and the tingling and muscle aches back again. Ive had trigeminal, glossopharangeal and occipital. And the twitching and random muscle burns and tingles and vibrations everywhere. This has gone on for TWO YEARS. TWO YEARS of a million doctors and tests. How can this be? Still have that polyclonal IgM and now an antinuclear antibody but not postiive on any autoimmune test except anticardiolipin antibodies. A well known lyme doctor says I have lyme and definitely reactivated epstein barr virus. EMG last year says no damage, but no biopsy taken. Have been taking lyme meds but feel like thats inaccurate and Im not getting any better.


So here are my questions
-Anyone with an infectious cause to their neuropathy? I understand I can't cure EBV so does that mean this will just get worse and worse
-I am going to get the EMG repeated. I believe I have some muscle atrophy in calf as well. I guess my question is this - I definitely have neuropathic pain, but not sure about neuropathy b/c I have no real deficits - meaning, my feet are not numb, I have heat/cold sensation, etc. What does that say? Or is the level of damage/no damage not important. I can still run, workout, wear heels, etc.
-As the fun continues, I have begun to get repetitive sleep onset breathing issues. Like I just stop breathing or breathe too shallow and wake with chest pain and a dying feeling. That has me scared that something degenerative is going on with my brain! Or can neuropathy impact your brain and central nervous system as well. This was all preceeded by months of weird palpitations like my heart was short circuiting. So there is definitely an autonomic component as well.
-Having compression nerve sites as well. LIke when I rest my elbow on table.
-Finally, can PN present with crazy amounts of anxiety? Thats how this all started. Like someone flipped a switch. And no psyc drugs did anything for it. Only made it worse. I know it sounds either autoimmune or infectious, right. Could it have been dormant for 15 years?
-Is it possible to have cranial, automatic and pn at same time?

Sorry, Im just so scared. I need this to end. The nightmare the symptoms produced in 1999 scared the buckets out of me and when they returned in 2013 and haven't gone away ......

Sorry its so long. Im rambling now. Any advice!?

I'm so sorry. I have many of those symptoms but not nearly as full on as you.

Search my post on stress reduction with CD recommendations. They do help me more than anything else I'm doing but I do them for hours each day. That would be my input on this. I'm expecting mine to go south one day. It's stressful wondering what day that will be. So I just get down with my CDs and often when I'm in that space I don't perceive any pain. I can even feel blissed out at times. They I get up and it's waiting for me but often decreased for several hours or even days right now. My prayer is that you may find some kind of relief. You could use a break right now.

PM me if you can't find that thread and you want to know what CDs I recommend.

[Pyr2]

I really appreciate the response. My post was long and rambling so Im not surprised that people haven't replied!!))

I went back and read and see that you are in Scotland AND have SFN and thyroiditis and RA. This is naive but if you control those, doesn't that control the neuropathy, or no?

I can't believe its been two years of this. I declined the biopsy when the emg was normal. Now I have hard time believing I could even pass an EMG! The atrophying muscle has me very freaked.

This is all made worse by a few things. First, I am a female of "that age." So there is more than a fair share of "oh your almost in menopause" going on. Second, I am 46 but I have 3 kids, 2 of whom are very small (4 and 6). This has been devastating for me b/c Ive become a snappy, yelling mom who is so absorbed in "finding out" whats wrong with me. I am also worried b/c I want to be here to see them grow - I want to be around and see them live and without a "cause," I feel like that sword always over my head. Also my husband, while amazing in so many respects, is of the tough and nonworrying sort - he doesn't beleive anything I say until the doctor says it. He is against researching and message boards, and honestly does not want to talk about this as much as I would like. You know what, on some level I see his point. I think too much knowledge has almost killed me. Finally, this may be harder for those of us who were once super active and super healthy. I came through open heart surgery 8 years ago (for a faulty mitral valve) without a tear or a worry. I wasn't on the message boards etc. I faced it very matter of fact b/c i KNEW what was going on. This has me mourning my future and I don't even know what's wrong yet. You are a few months ahead of me!

Direct me to the date of the post with your relaxing/healing recommendations.

L

[KnowNothingJon]

I will add that when I am stressed and or worked up my symptoms get enhanced. The buzz in my left heel is like Spiderman's spider sense in that way.

I don't have many of the same symptoms, but some. It is not uncommon for a diverse range, though.

My suggestion would be to get a punch biopsy, though. From the sounds of your symptoms it would not be surprising if the results were abnormal in some way. The EMG/NCS measures large nerve fiber abnormalities. It will not detect the small ones.

One the children front, I get it. It scares me to no end. I try to mitigate my impact on my kids, both under 10, but it is there. My wife and I both know it. We do the best we can.

My daughter is on the road to double digits and is a great help. The boy is on the way to four and to me, acts out at times over my issues. That is likely my irrational guilt over the impact this has on our lives.

It is hard and will remain hard. We are developing a long term plan and doing our best. I wish you the very best in finding an answer (if possible), a treatment option for your symptoms that is workable and quality family time.

My best,

Jon

[baba222]

Originally Posted by Pyr2

I really appreciate the response. My post was long and rambling so Im not surprised that people haven't replied!!))

I went back and read and see that you are in Scotland AND have SFN and thyroiditis and RA. This is naive but if you control those, doesn't that control the neuropathy, or no?

I can't believe its been two years of this. I declined the biopsy when the emg was normal. Now I have hard time believing I could even pass an EMG! The atrophying muscle has me very freaked.

This is all made worse by a few things. First, I am a female of "that age." So there is more than a fair share of "oh your almost in menopause" going on. Second, I am 46 but I have 3 kids, 2 of whom are very small (4 and 6). This has been devastating for me b/c Ive become a snappy, yelling mom who is so absorbed in "finding out" whats wrong with me. I am also worried b/c I want to be here to see them grow - I want to be around and see them live and without a "cause," I feel like that sword always over my head. Also my husband, while amazing in so many respects, is of the tough and nonworrying sort - he doesn't beleive anything I say until the doctor says it. He is against researching and message boards, and honestly does not want to talk about this as much as I would like. You know what, on some level I see his point. I think too much knowledge has almost killed me. Finally, this may be harder for those of us who were once super active and super healthy. I came through open heart surgery 8 years ago (for a faulty mitral valve) without a tear or a worry. I wasn't on the message boards etc. I faced it very matter of fact b/c i KNEW what was going on. This has me mourning my future and I don't even know what's wrong yet. You are a few months ahead of me!

Direct me to the date of the post with your relaxing/healing recommendations.

L

Has anyone tested all the labs for your thyroid?

[Pyr2]

Yes, several times, and Im always right at the low end of normal. Like right there at the very last decimal! I have read things that those low normal results are not good and that doctors should consider treating, but the dr's I have seen refuse to treat. I am going to revisit this thought if nothing shows up b/c it sounds SO thyroid to me.

[heb1212]

Originally Posted by Pyr2

Hello, I have posted here before and I suspect will be a regular poster in the next few months. I will try to break my questions up. I really could use some advice (and a big hug, but I will let my family take care of that!) although right now no one knows what to do with me.....

I am a 46 yr old female. 16 yrs ago I had a bout of tingling sensations. Neuro chalked up to prewedding jitters - EMG done, MRI only a t2 spot. Then 15 yrs ago after birth of my daughter, life exploded. Immediate onset of anxiety feeling and burning sensations in muscles and tingling everywhere. It was horrible. So much testing done including bone marrow biopsy. Only thing found was a polyclonal IGm indicating infection/inflammation but they said you had a virus, move along with your life. And so I did.

Throughout the years, more weird neuro tingles and vibrations, but nothing bad until 2 years ago. Then the world exploded again, but MUCH worse. Cranial nerve and autonomic attacks - almost like migraines, spasms with heart rate elevations, head pressures, "teething" feeling, feel like gums swollen, like someone pulling tongue down throat, dizziness, nausea, and the tingling and muscle aches back again. Ive had trigeminal, glossopharangeal and occipital. And the twitching and random muscle burns and tingles and vibrations everywhere. This has gone on for TWO YEARS. TWO YEARS of a million doctors and tests. How can this be? Still have that polyclonal IgM and now an antinuclear antibody but not postiive on any autoimmune test except anticardiolipin antibodies. A well known lyme doctor says I have lyme and definitely reactivated epstein barr virus. EMG last year says no damage, but no biopsy taken. Have been taking lyme meds but feel like thats inaccurate and Im not getting any better.


So here are my questions
-Anyone with an infectious cause to their neuropathy? I understand I can't cure EBV so does that mean this will just get worse and worse
-I am going to get the EMG repeated. I believe I have some muscle atrophy in calf as well. I guess my question is this - I definitely have neuropathic pain, but not sure about neuropathy b/c I have no real deficits - meaning, my feet are not numb, I have heat/cold sensation, etc. What does that say? Or is the level of damage/no damage not important. I can still run, workout, wear heels, etc.
-As the fun continues, I have begun to get repetitive sleep onset breathing issues. Like I just stop breathing or breathe too shallow and wake with chest pain and a dying feeling. That has me scared that something degenerative is going on with my brain! Or can neuropathy impact your brain and central nervous system as well. This was all preceeded by months of weird palpitations like my heart was short circuiting. So there is definitely an autonomic component as well.
-Having compression nerve sites as well. LIke when I rest my elbow on table.
-Finally, can PN present with crazy amounts of anxiety? Thats how this all started. Like someone flipped a switch. And no psyc drugs did anything for it. Only made it worse. I know it sounds either autoimmune or infectious, right. Could it have been dormant for 15 years?
-Is it possible to have cranial, automatic and pn at same time?

Sorry, Im just so scared. I need this to end. The nightmare the symptoms produced in 1999 scared the buckets out of me and when they returned in 2013 and haven't gone away ......

Sorry its so long. Im rambling now. Any advice!?

Rambling is allowed... You've earned the right!
I read your post twice to let it sink in. I have a four year plight as lengthy as yours and as torturous. I have had nearly every type of pain possible... Every nerve including the cranial ones you've mentioned and joint pain in nearly every joint and fibro muscle pain. My teeth even hurt too.
Your post is personal to me. I'm scared too. I don't know if I have been tested for the polyclonal IgM so I wouldn't know if I'm positive for that. But the interesting thing is I have positive anticardiolopin antibodies too. They are only slightly elevated. But another anti phospholipid antibody called beta 2 glycoprotein is extremely elevated. All other autoimmune bloodwork has been negative. And yes... The onset of my body wide pain and "sensitization" was at first considered post-viral after a bad bad case of parvo virus b19. I still have evidence of its presence in a positive DNA test for it. No doctor anywhere, and believe me, I've chased down every doctor across every specialty, has been able to understand it or help me. So yes, mine is seemingly related to an infectious and possible immune-mediated process. Nonetheless, even knowing this, there is no help except medication to simply take the edge off a miserable pain level otherwise.
I'm so sorry for your suffering. It touches me personally. I have tears for you.

[madisongrrl]

Hello Pyr2,

I think we share more than a few symptoms. I have burning all over my body; numbness; tingling; crawling; heart palpitations; eye,face and throat pain; shortness of breath etc. I do have temperature loss from my wrists to part way up my forearm. My immune system is over reacting to heat to the point where my face is swelling up angioedema style and my doctor said she has never seen this. Good times! My symptoms came on very fast about 1.5 years ago; however, I've had some strange and subtle symptoms for over 10 years.

I'm seeing a Lyme Literate doctor this week. I live in Wisconsin (Lyme endemic state), was an avid mountain bike racer, and have been bitten by ticks of all varieties on a weekly basis. I was in the woods at least 2-3 days per week, every week from Spring until Fall, every year I trained and raced.

10 years ago I was bitten by a deer tick (not my first and probably not my last) and proceeded to have typical Lyme disease symptoms several weeks later (and not so typical symptoms too). I had nausea, extreme fatigue, I was dropping things at work, had feelings of electricity, heart palpitations, and had two seizures. I had 4 negative Lyme tests along the way. They tested me for MS and when that was negative, docs just shrugged their shoulders. Finally, they decided to give me a 10 day course of antibiotics and it slowly made me feel better, but not entirely.

After that particular tick bite incident, I've had strange symptoms over the last decade. I'd complain about my toe joint problems to my foot doc. The X-rays and MRIs would always indicate that the level of damage was not as bad as my pain level complaints.....until my foot doc actually saw my toe joint swell up and turn red one time. He didn't know why or what to do!

I'd get a bike injury to my wrist (long race in the cold - ulnar nerve palsy), but then I'd have burning pain for years after, even with a negative EMG (PCP always thought it was fibro or RSD related). Again, diagnostic damage would never match my pain levels.

I had a VMO/quad tendon overuse injury in my knee (which is extremely rare in a cyclist) where I went through 4 PTs, one famous sports medicine UW Badgers doc (PRP therapy), and 2 rehab docs. The pain burned in my knee for 4 years and would move around to the inside and outside of my knee and up my IT band. I was also getting the same thing in my spine and back. It was the last PT who told me that something was very wrong - and that I should have been better with all my rehab and something other than muscle-skeletal was going on.

Several times a year, both knees would always swell up to the point where I couldn't bend them. There was no test that was ever positive or that entirely explained these symptoms. I've had pain all over my body that I chalked up to being an elite athlete (pro card holder in cross country mountain bike racing).

Now I have burning all over my body and I have large fiber damage in my peroneal nerve that doctors can't explain - even the highly touted rehab doctor from the teaching hospital. I could go on and on........is this Lyme or a tick-borne disease? Maybe. Is this presentation normal? Hardly. Either way, tick-borne disease is the most important avenue to investigate based on my personal history.

I'm sorry you are dealing with this. This stuff is very hard to sort out and often it is hard to find a doctor that is willing to help you sort it out. I'd recommend a book called Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz. I think this book will help you decide if you should keep pursuing the tick-borne disease angle or even choose a different Lyme doctor (there are many different philosophies how to treat Lyme). I'm also sorry that your husband isn't totally on board with you; however, make sure you don't burn him out by always telling him about your symptoms. Use this message board to vent, compare symptoms or ask questions. People on here will understand what you are going through.

[baba222]

Might want to do T3 and T4 and get a knowledgeable doctor that knows the results.

[Pyr2]

Heb, Bab, Jon, Mad, thank you all for your very kind words and messages. Heb, no tears, really I've shed enough here!

Yes, I think what scares me the most is the underlying process, not the neuropathy. I do not have pain that requires medication (at least not yet!) And I almost wish on some level that its not SFN b.c it seems like if its another type, then at least they may be able to try IVIG, etc. I know that sounds crazy to wish for something "worse."

As for Lyme, Madison, I feel for you. While not an elite athlete, I was/am! a pretty good one - and I have been been cutting back the last few months out of fear. Should I? Probably not. And that has led to deconditioning which has led to more fear that Im weak and tired and something "must" be wrong.'

As for Lyme, yes! I have the Horowitz book. Very good. I have VERY specific Lyme bands - 39,23, etc. Always indeterminate on tests (so never negative either). Lyme dr says I have been exposed to Lyme but may not have had the illness. I have no idea what that means but i must be a distinction with a difference. She has never been able to really fully explain how that can be.

I am thinking though that its the EBV. My titers NEVER go down. I had a horrible case as a teen. Every time Im tested they are there. I think that is the source of my persistent infection. I am going to an infectious disease dr at U Penn next week but not thinking she's going to make anything of it b/c while I show high titers by ELISA, I don't by PCR and you have to have the DNA in your blood for them to consider it an issue (kind of like you and Parvo , heb). I will ask her about the Lyme as well but I know ID doctors are not big on Lyme either.

Ive also become somewhat agoraphobic and afraid to leave the house. Why? I have no idea. I just don't want to be out. Definitely a huge level of depression here and lack of in anything else.

I remember when I was recovering from crazy round #1 in 1999, my then 94 year old grandmother (who would live to 104 bless her soul!) sat me down and said to me I don't care how you feel, you will get up and go back to work. Work is good for you. Its good for me. I still scrub the floors every day. And you know what, I started a new job and as hard as it was, I got better and it took my mind off of this.

Now I work from home part time and take care of my three kids. Yes, a lot going on but a lot of "alone" time for me at home to go on the internet and look and ponder, wayyyyy too much.

I said to my husband that sometimes I wish I could just go to a country home, you know like they did at the turn of the century to recuperate! LOL. Honestly, I have some notion that total rest away from the home will kick whatever this is into remission like it went over 15 yrs ago.

Okay, enough psychology! Thanks again. All of your responses meant a whole lot to me. And will definitely recheck thyroid.

I will update you as I know things! Lots of appointments in the next 6 weeks.

L