Can someone help with my fears?

First of all Happy Holidays!

I have posted before. I have a history of past Lyme and current reactivated epstein barr virus. After a series of weird seizures 2.5 years ago (eyes twitching, nausea, a rising feeling, cold sweat, face stiffening), I have been experiencing neurological chaos.

Part of this neuro chaos is intermittent GPN and TN. Not sure which. My symptoms are I will get teeth pain like teething dull aches, cheek pain lower half of cheeks, jaw pain and throat pain (but not when swallowing). I also feel like someone is pulling my tongue down my throat and my roof of mouth is stretching and as weird sensations. I have sharp tonsil pain. Burning mouth syndrome. These are not the intensity of true TN or GPN, but nevertheless EVERY time I get them it brings me back to whats wrong with me and whats causing this. And it stays for weeks at a time, goes away and comes back weeks later. I have had every test in the book and ten neurologists, no answer. I also have full body twitches, sometimes burning spasms in my body, and on my face burning. I have also been diagnosed with autonomic nervous system dysfunction.

So here is my fear. Could this be the start of something horrible like bulbar ALS? I definitely dont have slurring of speech or choking issues or drinking issues. I have read that does not start with pain and I definitely do have pain and sensory issues. The thing that threw me over the edge was that all of a sudden I have developed obstructive sleep apnea. Im 120 lbs and definitely not overweight. I do have some predisposing issues such as the way my tongue and roof of mouth is. Anyway in discussing this with the dr, he said "well it could also be caused by some neuro condition that weakens the back of the throat" Well that did me in.

The logical side of me said this has been going on 2 years and most bulbar ALS cases are almost over by now and I dont have any real bulbar symptoms. But Im nervous that something is "developing" like ALS or something other nerve issue involving the throat (like what I don't know). How have you settled into it is what it is. I even had a tongue EMG last year when it was happening. Any words of comfort?

Hi Pyr2,

I think all of us have experienced fear. Fear of what if it is this, what if its that, sometimes not being diagnosed, other times have an established diagnosis changed. Sometimes it can alter with each neuro you attend. Non of it comforting. All I can say is, its ok to be scared, but don't let it take over. Its a bit like being a kid at the pool learning to swim - if they look at the length of the pool it creates panic in their little hearts. So take it one step at a time. Sometimes one symptom at a time. Fear overtime will only have a negative effect on your overall well being. You have kids, so treat yourself as kindly as you would them if they were facing an undefined challenge over which they had no control. Be your own best friend and don't borrow trouble. Decide today that you will take on board anything concrete and do your best to minimise negative stressors who, or whatever they maybe and put yourself first. You probably don't realise it, but going through everything you already have makes you braver and more resilient than you were before. You've gotten this far, so you'll go the distance, no matter where it takes you, and you'll do it with your kids and family with you. If your fear about ALS is increasing then get on the phone and ask your neuro to explain to you where you sit in the diagnostic puzzle in relation to this condition. You've already done some of this from your comments above. Sometimes, having your neuro explain their rationale can actually be quite comforting. I hope this helps you a bit - I'm sorry there's no quick or easy path here to follow. Get up tomorrow and savour the day, have a lovely holiday season with your family and really live your life to the full - because as sick as we get, we still woke up this morning to the gift of another day. :)

Thanks PYr2 for your encouraging comments...I really needed that today! I have a a diagnosis of lefts sided GPN, Bilateral TN, Bilateral ON, burning mouth syndrome, palatal myoclonus, bodywide myoclonus, facial myoclonus as well as muscle twitches everywhere, spasticity, migraine w/aura, bodywide polyneuropathy, "fibromyalgia", disabling fatigue, etc. etc. etc. and just a few days ago got more really bad news from spine specialist when he told me I have spinal cord damage based on my neurologic exam, clinical signs and symptoms. Thus, am scheduled for a whole spine MRI with and without contrast (already had a brain MRI w and w/o contrast). The spinal cord diagnosis was not a shocker really because I had researched all of my neurologic signs and read and interpreted all my previous doctors reports about their neurologic exams because none of my drs were being upfront and telling me what was causing any of my neurologic symptoms.... but what is so upsetting is that none of the MANY neurosurgeons, orthopedic surgeons, rheumatologists and neurologists did anything about stopping further cord damage or finding the cause (back when signs and symptoms started in 2005) despite my persistence and my not giving up..no matter how hard it was to get a doctor to see me or to get them to do a diagnostic test I made it happen and despite that they still didn't diagnose me correctly!...I have lost track of how many doctors I have seen there have been so many. Some of my neurologic symptoms started in the late 90's, then had more develop in 2005, then more serious ones like bodywide myoclonus and neuropathy in 2009 so I have been trying to get a diagnosis since 2005 but I still have no diagnosis for the cause of all of this. My family is plain sick of hearing about all of it so when I was crushed by the recent diagnosis about my spinal cord I couldn't even discuss it with my husband or anyone else...it really doesn't mean anything to them when I explain it anyway...all they can understand is that it explains the pain and neurologic symptoms but we still must find the disease causing it....my best friend is intelligent but kind of has ADHD so listening to all the details is too difficult for her and she usually forgets what I told her anyway and then I must repeat it all from the beginning so I just stopped talking confiding in her about it. My symptoms and signs fit to the "T" that of neurologic complications of Sjogren's Syndrome. Sjogren's syndrome is one of the diseases that causes GPN and GPN is rare acorrding to the UCSD neurosurgeon who diagnosed my GPN along with my bilateral TN and ON (see John's Hopkin's University Sjogren's Center online for more information). Sjogren's is one of the most common causes of bilateral TN too. The other disease that needs to be ruled out is MS since it is the other most common one to cause bilateral TN. Anyone out there hear of MS causing GPN? I can't remember reading that in all of the journal articles on MS and cranial nerve disorders but my anti-seizure meds mess with my memory big time too...lol. We sold our beautiful custom home in Utah that my wonderful amazing husband built with his own hands and then we moved all the way to Calif. near our home town of San Diego to live with my mother in law in order to be close to major medical facilities like Scri..., UCS... and UCL... yet I have been seeing neuros and other drs here in San Diego for over 1 1/2 years now and still no diagnosis for what is causing my neurologic disease which continues to get worse. Rheumatologist here said not Sjogren's because no positive labs for antibodies even though over 50% of Sjogren's patients don't have the antibodies and this is especially true in those who present with neurologic complications...other Rheumatologists and eye doctors seen are also ignorant and think Sjogren's only causes dry eyes and dry mouth! Very frustrating to say the least to watch my level of disability slowly increase, worsening effects on walking ability, and worsening of pain levels, dysesthesias, spasms, cramps, twitches, etc. while doctors do nothing to find and treat the cause... and if I don't get somewhere with doctors here soon at major medical centers in San Diego after my spine MRI, I will likely being moving on to a specialist in Sjogren's at Cedar... in L.A. (finally got my primary dr to write a referral to them but was already seeing specialists at UCS... and hoped they would work as a team and figure things out like they advertise ...that has not happened...in fact my experience has been quite the opposite!..(it has been a pretty stressful experience and I have had to play mediator, communicator between specialists in order to get anything accomplished..even just to get an order for a diagnostic test sent to the correct place ). I will be forced to travel to John's Hopkins University Sjogren's center so long as I don't receive an MS diagnosis here first. However, if I do go to John's Hopkins my insurance coverage for going out of network will be so bad I won't be able to afford it!...but if it comes down to that I will do it if it means my ability to walk and function may be maintained! I spent literally all day on the phone Wed. from 8:45 a.m. to 4:45 p.m. just coordinating getting my MRI from my neurologist to the correct dept. at UCS... imaging in time to be scheduled for next week in time for my follow up appt with the spine specialist there on the 30th! I have no choice but to cram in the MRI, all diagnostics, appts. and RX's before the end of the year because I met my deductible and my out of pocket max for the year and don't even have a copay for anything right now (this is because I already had 3 other MRI's this year and numerous other tests and appts so have spent a lot of $$). However, I try to look at the bright side that although this month is very stressful due to all of this, at least I have health insurance due to Healthcare Reform which I would otherwise not have because my husband is self employed and this is enabling me to get the very expensive tests out of the way necessary to actually get a diagnosis (I already had the "million dollar" workup as far as labs and MRI's while living in Utah too and ruled out a lot of other diseases)...but when they couldn't come up with a diagnosis, neuros there had a really really bad attitude and told me things like "it was all in my head," and "I am just overly worried about my health" and even wrote a letter to one referring physician which stated that I had "somatoform disorder" BEFORE he had received my biopsy results back which proved I had neuropathy! So I keep pushing, keep demanding appropriate care, keep hoping one of the doctors I see will actually review my complete medical history and put the pieces together, and either come up with a diagnosis or refer me to the appropriate dr. who can do so...in the meantime to cope with all of this I cry a lot (mostly due to frustration and anger with the medical system and arrogant drs), and pray a lot, sleep a lot, and do my best to help others which takes my mind off of my own problems and puts them in perspective again... then determination usually kicks in which drives me to push forward and advocate for myself medically. And like you said I woke up this morning to the gift of another day....and when I can tell it is going to be a really bad day for me physically anyway if I don't get more rest...then I just go back to bed and start over the next day!..lol. :)

Smiley and SDCaligirl- Thank you for responding, it was a nice holiday surprise. Smiley, I know you have been on here for a while and your approach is very soothing and rational and seems to make peace with the situation. My problem is I have lost rationality because the symptoms seem so bizarre and neuro symptoms are just plain scary - I always feel something is lurking to come out. I have seen many specialists and had EMGS for ALS even one of my throat, but that was two years ago and Im worried, was that too early, etc. The continuing symptoms have me upset, even though I know that two years into bulbar ALS I would be in a truly bad place (slurring, choking, etc)

Cali- I have been the MS and rheumy route. I feel like I should have MS based on all my symptoms and would almost welcome it (did I type that) just to explain this nonsense. As for rheumy, I do have anticardiolipin antibodies and a positive (Low) ANA and low complement levels so they have said I have something "lupus like" but really no name. As for Sjogrens, yes, very familiar with it, and same with me they have not tested, and I have not asked for it, but perhaps the lip biopsy would be in order.


At this point I am waiting for results of my small fiber neuropathy to come back.

I have some reactivated viruses and it would make sense that these could cause these issues since epstein barr lives in the nerves. Also having Lyme in the past I suppose could do this. Its just the escalating and continuing nature that I can't handle. Its like a new symptom or manifestation all the time.

My family as well is challenged by this situation. I have some young children and a teen and my husband is just sick of this. Its been over 2 years for me. You can read my other posts on how it started. I am sorry that yours is so stressful that you need to move closer to these medical facilities that don't seem to help at all! I guess the best that we can all hope for is that if they rule out the deadly stuff, we can live with symptoms. Thats what I pray for. Just some reassurance and peace.

It seems like most people on the board have more "classic" presentation or a blood vessel or something obvious which makes it less scary because there is a cause or a pattern.

I thank you for answering. I am seeing a specialist at UPenn in cranial issue later in January so hopefully I can get some more specifics then.

Best,
linda



Pyr2 said:

Smiley and SDCaligirl- Thank you for responding, it was a nice holiday surprise. Smiley, I know you have been on here for a while and your approach is very soothing and rational and seems to make peace with the situation. My problem is I have lost rationality because the symptoms seem so bizarre and neuro symptoms are just plain scary - I always feel something is lurking to come out. I have seen many specialists and had EMGS for ALS even one of my throat, but that was two years ago and Im worried, was that too early, etc. The continuing symptoms have me upset, even though I know that two years into bulbar ALS I would be in a truly bad place (slurring, choking, etc)

Cali- I have been the MS and rheumy route. I feel like I should have MS based on all my symptoms and would almost welcome it (did I type that) just to explain this nonsense. As for rheumy, I do have anticardiolipin antibodies and a positive (Low) ANA and low complement levels so they have said I have something "lupus like" but really no name. As for Sjogrens, yes, very familiar with it, and same with me they have not tested, and I have not asked for it, but perhaps the lip biopsy would be in order.


At this point I am waiting for results of my small fiber neuropathy to come back.

I have some reactivated viruses and it would make sense that these could cause these issues since epstein barr lives in the nerves. Also having Lyme in the past I suppose could do this. Its just the escalating and continuing nature that I can't handle. Its like a new symptom or manifestation all the time.

My family as well is challenged by this situation. I have some young children and a teen and my husband is just sick of this. Its been over 2 years for me. You can read my other posts on how it started. I am sorry that yours is so stressful that you need to move closer to these medical facilities that don't seem to help at all! I guess the best that we can all hope for is that if they rule out the deadly stuff, we can live with symptoms. Thats what I pray for. Just some reassurance and peace.

It seems like most people on the board have more "classic" presentation or a blood vessel or something obvious which makes it less scary because there is a cause or a pattern.

I thank you for answering. I am seeing a specialist at UPenn in cranial issue later in January so hopefully I can get some more specifics then.

Best,
linda

Linda....was nice to hear from you...sorry its been awhile since I have logged in...I have a friend who has lyme disease who has a firm diagnosis of small fiber neuropathy from a neurologist. She is seeing a lyme specialist (M.D.) in San Diego also. She has cranial nerve symptoms (mainly chronic itching of her entire scalp caused by the nerves....which is what I had before my GPN, trigeminal neuralgia, etc. started so I am very worried for her) but she has no pain from her small fiber neuropathy (yet)....she does however have joint pain and all the typical autoimmune symptoms...as for all the strange neurologic symptoms she hasn't mentioned those...however neuropathy can have very different presenting symptoms in different individuals. One thing I know is she has been sick for many years and has slowly gotten worse till recently developing the joint pain. She also has had a positive ANA several times. She definitely remembers the tick bite and symptoms that followed. She has also lived in a foreign country before but now lives near me in Calif. I have done extensive research on neuropathy, the different types (large fiber, small fiber, hereditary, autoimmune, etc. etc.) in all the same medical journals doctors use (or are supposed to be using...lol). Lyme is one of the few autoimmune diseases that cause cranial nerve neuropathy. Peripheral Neuropathy itself causes a lot of strange neurologic symptoms and it is possible to have both SFN and another type such as large fiber neuropathy (affecting motor nerves) at the same time. I believe I also read that lyme can affect both the central nervous system as well as the peripheral nervous system. Peripheral neuropathy can be generalized (bodywide) or can affect just the limbs...it has varied presentations depending on the type. The biopsy for SFN is just the beginning of the workup that you need if you have neuropathy and the workup should be done by a neurologist who is neuropathy specialist or you will end up wasting a lot of time and money (already been there done that and finally ended up at the neuropathy specialists). So it may be worth it for you to get a thorough workup for lyme disease and lyme neuropathy due to your history. Unfortunately, there are also many patients who never get a diagnosis of the cause of their neuropathy so it is labeled "idiopathic" and that number is quite high at around 40%. However, when the neuropathy is not your only symptom doctors should have a much higher chance of finding the cause...i.e. lyme, high ANA, EBV, etc. (my friend also has high EBV titers which her lyme dr. said is common in lyme disease because of their autoimmune response). I had a lip biopsy (minor salivary gland) and the results showed complete acinar atrophy of the gland...which would totally explain dry mouth but it didn't show the pathology necessary to diagnose Sjogren's. However, my biopsy was taken by an ENT totally inexperienced in Sjogren's and I don't think it was sent to a specialized lab either. Everything I have read about lip biopsies since says it must be done at the right lab and interpreted by Sjogren's experienced doctors to get a proper diagnosis. My mother's neurologist said it may be Sjogren's in her case which can be hereditary (mom has a lot of same neuropathy symptoms as me and SICCA syndrome with "fibro" and my daughter was diagnosed with "fibro" at age 7 yrs. by Primary Children's Hosp. Rheum.) All specialists I tell about this say it is very rare to have 3 generations of one family have fibro and much less have one diagnosed so young which makes me think it is is not the correct diagnosis...that the "fibro" is just a symptom and not the disease. Anyway, hope this info helps you some. I am making some headway with my new doctors in San Diego but it hasn't been without a fight that's for sure. I finally found out that I do have spinal cord damage causing myelopathy which explains a lot of my neurologic symptoms, bodywide and limb weakness but does not explain my GPN, trigeminal neuralgia, occipital neuralgia etc. I was previously told by my Utah specialists (5 of them) that I did not have myelopathy! Now my doctors must determine if it is being caused by my cervical degenerative disc disease for which I already had surgery or if there is an autoimmune disease causing damage to the cord (so new MRI's, CT's, etc. of my entire spine now). Myelopathy is a scarry diagnosis but at least I have some answers and it helps me feel less crazy and I can now work toward getting help to keep my mobility as long as possible even if it is very painful to move....don't give up...you are not crazy and it is not all in your head! Hang in there girl! Christina

Have you been checked for Eagles syndrome?your symptoms sound like mine

Thanks for your Reply Deleone. That's interesting because I researched Eagles syndrome a few years ago and sort of forgot about it since...at the time I thought many of my symptoms fit but a doctor who knows anything about that syndrome has not checked for it. I also have myelopathy (spinal cord damage diagnosed a few weeks ago) and cervical DDD but my doctors are in disagreement as to the cause of myelopathy (cervical DDD compression of cord vs. autoimmune disease, vasculitis or other cause). At least I now have some answers on the cause of my bodywide weakness, spasticity and possibly my myoclonus too...based on previous neurologic exam results (I review ALL my chart notes myself) I new myelopathy was the cause of these clinical signs and symptoms but had been told that I didn't have it by my old drs and so I couldn't get a diagnosis (really, come on docs pick up a textbook...this is neurology 101). I never mentioned the word to my new drs because I was trying to get THEIR opinions and immediately they said spinal cord damage based on my neurologic exam findings alone...exactly as I suspected...and they hadn't even asked me about my neurologic symptoms yet!. Thanks Deleone for the reminder...I will look into eagles syndrome again and ask my doctors!

Forgot to tell you in my last message that I also have autonomic nervous system problems and burning mouth syndrome too, jaw pain, sharp stabbing pain in throat (misdiagnosed as tonsillitis by ENT), spasms in throat if I try to sing, voice weakness, hoarseness, dysarthria sometimes when muscles are fatigued or in spasm, esophageal spasms, burning in face. Basically every major cranial nerve in my head and face as well as some of the minor nerve branches have a neuralgia syndrome involved. Even if the symptoms are all affecting your head, don't let your doctor make you think "its all in your head" and definitely do what you can to keep that from being written in your chart...been there...trust me on that one. Just because a doctor is ignorant about a condition, does not mean it is in the patient's head. Also, to me it does not sound much like ALS to me since I researched that when I began having the cranial nerves in throat and mouth affected too but I am not a doctor.

Hi everyone! Oh, how I wish that something like SFN would show up. Upenn cranial neurologist said not neuralgia. One general neurologist said dystonia, which a movement disorder neurologist disagreed with. So far all we know is I have autonomic dysfunction- TMI, but my bowels have completely stopped working. So its getting scary b/c now they are looking at things like multiple system atrophy and other dysautonomias, but my balance is good and knock on wood no orthostatic hypotension or urinary incontinence. How far afield this has gone from a throat thing- the pure GPN members are probably fed up with us! LOL. I also have full body burning muscle cramps and probably the throat thing is some type of spasticity b/c when it comes on it wipes me out from the pain and leaves my throat so sore. I also have lower body legs aches and nerve pains, yet all negative EMGs so clearly this is something coming from the CENTRAL nervous system. I too have very bad cervical necks issues so I am wondering if I should explore that. I am thinking that at some point I will wind up at Mayo or Vanderbuilt where they have autonomic units. And the upenn neuro did mention eagles syndrome but can't see how that would explain all the body wide myoclonus, spasticity, etc. Oh, yes, I was cleared on bulbar EMG for ALS over the New year.

Hi Pyr2,

Maybe, by the sound of it, you have a few different things going on. Which in your case could be an understatement. But if you apply that logic, then the Eagles diagnosis could make sense.. Just a thought. Really glad you've had the ALS cleared.

All the best :)

Hi Pyr2, I don't know if I mentioned before that I also have dysautonomia syndrome and bodywide movement disorder, bodywide spasticity...recently diagnosed myelopathy (spinal cord injury) and SEVERE cervical degenerative DDD with 3 level cervical fusion surgery in 2013. Also, no evidence on MRI that Cervical DDD is cause of my myelopathy and 6 neurosurgeons and orthopedic surgeons told me it is not the cause prior to my surgery. My myelopathy symptoms, spasticity, myoclonus, dysautonomia all appeared many years prior to 2013. If you have dysautonomia you need a TILT TABLE TEST by a cardiologist who is an electrophysiologist if you have not had that yet. Your bodywide burning pain and muscle cramps are definitely symptoms of small fiber neuropathy. There are many autoimmune diseases that can cause all of the above with cranial nerve damage but a few of the most common to cause cranial nerve problems including Trigeminal neuralgia and GPN are Sjogren's syndrome (which can include arthritis that can cause cervical DDD), Lyme disease, and MS. You definitely need a skin biopsy (no big deal just a punch biopsy) done by a NEUROPATHY specialist neurologist and sent to a specialty pathologist experienced in SFN to diagnose your SFN correctly...trust me been through it...waisted time and money with neurologists who didn't specialize in this. If you SFN symptoms (burning, cramping) are bodywide this means they should do a biopsy at both the ankle (distal) and upper thigh (proximal) on your leg because you have proximal (means close to the middle of body) symptoms if you have burning everywhere. This is the minimum biopsy to diagnose SFN and the ONLY sure way to diagnose SFN!. The cause of my movement disorders have not been diagnosed yet but am pretty sure they are not due to just myelopathy because my face has involuntary movements which cannot come from the spine and thus must be brain which means my disease has affected the CNS and PNS because spinal cord and brain are CNS and peripheral nerves like cranial nerves (GPN, TN, SFN, etc.). I was recently reading a journal article about spinal cord injury due to compression from DDD causing vagus nerve issues which cause dyasutonomia...it also talked about vascular damage due to compression of spinal cord cutting off blood flow to brainstem which affects function of the cranial nerves. I have not had a chance to mention this to my neurologist or neurosurgeon yet and not either is even qualified to understand it because last time I said something about the vagus nerve to a neurologist when my myoclonus started he looked at my like I was crazy and said there is no way that could be the cause of my symptoms! Well, so far everything I have read is pointing in that direction. From what I have read about dystonia it does not sound like you have it because your symptoms sound like mine and dystonia usually only affects the neck...I done extensive research on movement disorders and have probably read more journal articles on it than the # of class hours required for a general neurologist....only a movement disorder specialist neurologist will be able to help you classify your movement disorder but they tend to just want to treat it with meds and not find the cause which really makes me angry when that is not my only symptom so they are just looking at that one part of the picture. I have a friend who has multiple system atrophy diagnosis and she has parkinsonism shakiness difficulty standing and walking, POTS, etc and the disease progresses quite quickly and her involuntary movements seem to me quite different then mine...I asked about MSA when I was diagnosed with dysautonomia because I do have orthostatic hypotension but was told do not have MSA by neurologists. Your symptoms are sounding more and more like mine every day. I fear I may end up at Mayo or John's Hopkins too and I really don't want to put my husband through that because he is trying really hard to find a piece of land or a home for us right now since moving back to Calif. Thus, I for his sake I am trying hard to just deal with symptom management with meds as long as I can for the time being and going to UCSD specialists...at least I finally made the progress of the myelopathy diagnosis (which I diagnosed myself in approx. 2010 based on clinical neurologic exam findings and symptoms) but most of my doctors were so arrogant they didn't do a full neurologic exam or read my history with symptoms much less let me finish telling them my symptoms during a brief appointment...I am basically starting all over again with a new set of specialists in a new state and babysitting them every step of the way. When they refuse to take the time to review history, do an exam, etc. I move on to a new doctor who will. Too many of those and I will quit and go to Mayo or John's Hopkins. Make sure they check to see if you have any of the following neurologic signs on exam since you have cervical disease: Hoffman's sign, Ankle Clonus (these are two of most important), Babinski sign, Romberg sign. If they didn't tell you the results of your in office neurologic exam REQUEST YOUR CHART NOTES AND FIND OUT FOR YOURSELF and anything you don't understand research it so you can tell the next doctor any positive findings on neurologic exam and give them these chart notes! Doing these things is the only way I have gotten anywhere with any diagnosis I have received...In fact, every major diagnosis I have received I made myself long before the doctors did through very thorough research in the journals they are supposed to be reading. Some of these diagnosis still took years to get from doctors despite this...meanwhile I was suffering, completely disabled from working since 2005, etc. etc. Like I tell others, if you heard how many times this has happened and how many health problems I have you wouldn't believe me. Last visit to my pain mgmnt doctor who is great she said "you should be a neurologist...no REALLY you should because you already know it!" If only I was well enough to do so because I could REALLY use the paycheck...lol. How did it go at your appt. in January with UPenn....did you get anything diagnosed? Hope this helps you out in dealing with the process of diagnosis with these crazy neurologic problems. :-)


Smiley said:

Maybe, by the sound of it, you have a few different things going on. Which in your case could be an understatement. But if you apply that logic, then the Eagles diagnosis could make sense.. Just a thought. Really glad you've had the ALS cleared.

All the best :)

That's interesting because I researched Eagles syndrome a few years ago and sort of forgot about it since...at the time I thought many of my symptoms fit but a doctor who knows anything about that syndrome has not checked for it. I also have myelopathy (spinal cord damage diagnosed a few weeks ago) and cervical DDD but my doctors are in disagreement as to the cause of myelopathy (cervical DDD compression of cord vs. autoimmune disease, vasculitis or other cause). At least I now have some answers on the cause of my bodywide weakness, spasticity and possibly my myoclonus too...based on previous neurologic exam results (I review ALL my chart notes myself) I new myelopathy was the cause of these clinical signs and symptoms but had been told that I didn't have it by my old drs and so I couldn't get a diagnosis (really, come on docs pick up a textbook...this is neurology 101). I never mentioned the word to my new drs because I was trying to get THEIR opinions and immediately they said spinal cord damage based on my neurologic exam findings alone...exactly as I suspected...and they hadn't even asked me about my neurologic symptoms yet!. Thanks Smiley for the reminder...I will look into eagles syndrome again and ask my doctors

SDCalifGirl

So you hit on the big question - SFN or not? Believe me, I would be a lot more relaxed if I had it, but I dont. I already had the skin biopsy. I was really hoping for that. For me, then, I feel that my symptoms are absolutely CNS related, which is why MSA has been proposed. And thats one of those "it takes time to develop" things. I DID have a tilt table which was negative. The movement disorder specialist did not detect any parkinson or cerebellum symptoms and my MRI was clear but I get nervous that I am "starting to develop it." I felt that he kind of blew me off a little and was like, no you would be in a wheelchair by now but I have read of people developing autonomic symptoms YEARS in advance of MSA. How lovely to spend the next some odd years of my life daily worrying over symptoms and progression, etc. This is the biggest nightmare I have ever been involved with. The only other thing I can thing of is hyper mobility, ehlor danlos. I am hypermobile and have some other connective tissue disorder stuff- mitral valve prolapse that needed surgery, high arched palate, long face, etc etc. And I know those people are prone to dysautonomia. I don't know. I go an autonomic neurologist in 2 weeks. Im hoping he can shed some light on this or at least refer me somewhere. Thank you for responding, it makes me feel less lonely and weird.

I also have MVP (no surgery needed), a long face (to some people). but not hypermobility, no other connective tissue disease except Fibro diagnosed yet. If you don't have SFN then maybe they need to look into your cervical spine causing myelopathy causing burning pain and spasms, twitches, involuntary movements bodywide (if these symptoms are below the head they can be due to spinal cord). If also have them in face then likely it is brain related. Do you have white matter lesions on brain or any other type of brain lesions? There are many diseases other than MS which cause these brain lesions including Sjogren's, and other autoimmune diseases....not sure if MSA does. You said: "How lovely to spend the next some odd years of my life daily worrying over symptoms and progression, etc. "This is the biggest nightmare I have ever been involved with?" I am so sorry you are dealing with this too.....this has been my experience also for many years now...it really saddens me to know ANYONE else is experiencing the same thing. Because my doctors wouldn't listen, were dismissive and incompetent, my myelopathy did progress since it was not diagnosed or treated and then I also developed bodywide muscle cramps (like Charlie horse type) if I try to exercise or sometimes even just do stretches which caused my condition to deteriorate even more resulting in weakness everywhere from lack of activity. Now I need extensive specialized rehab therapy to keep my mobility and build my strength back up and have not even been able to get my doctors to discuss this yet! So I am just watching myself fall apart physically and can't even lift anything heavier than my purse or run the vacuum etc. when I used to spend hours gardening several times a week, walk daily for exercise, do big landscape projects myself on my home, clean a 3 story home by myself, etc. I have hopes to find a good physiatrist/physical medicine dr. that can help me with beginning rehab soon. Recently they finally started me on valium for spasticity and cranial nerve issues and bodywide itching caused by SFN as well as baclofen at bedtime for spasticity and myoclonus but it took years of dealing with these symptoms to even get them to believe me and take this seriously enough to do this! If your doctors have not yet tried these meds for you ask them about these and see if they help you....many drs refuse to prescribe valium if you are on pain meds because valium is a benzodiazepine due to risks of taking them together and the governing agencies coming down hard on prescribing so I had to change pain clinics to a dr who actually cared about my "big picture" and wasn't afraid of these risks and knows how to monitor the meds and prescribe them safely. Baclofen does not seem to be such a problem to get from drs if you have a diagnosis of spasticity or myoclonus but it took me years! First doctor I asked about Baclofen back in 2010 told me "no that is for stomach problems" because he was totally ignorant about the medication! Went thru many other dr's since then and asked them too...they said oh no we only use that in MS or for really bad cases etc. Didn't finally get an RX for it till my pain mgmnt dr's P.A. really took a look at the "big picture" with my case and said "haven't they given you anything for spasticity."..as if it was someone else's job to do so. He ended up writing my first RX for baclofen in 2014...so went 5 years from when myoclonus and spasticity started before I received my first anti-spasticity drug despite me knowing the drug and specifically asking for it many times and changing doctors until I finally got it! Just like with everything else you must be your "own dr" and your own advocate and know the medications that work for your problems and request them specifically to prevent not being treated at all due to dr's ignorance or simply not being familiar with how bad your symptoms really are.

I know it can be very scary when everything in your body seams to be falling apart. I have CNS lupus including vasculitis, vasculopathy, and autonomic nervous system dysfunction. The best way I have found to cope is knowledge. Removing the emotion and focusing on things analytically. A doctor only has a limited time with you, but you know your body. Read everything you can, but watch out for what source you turn to. Look for studies and journals, medical texts. It will help you to be organized and armed with questions when you go to your appt. Have you seen a rheumatologist? I looked up Lyme and that appears to be one of the caregivers you would see. If you live anywhere near Southern California, see Daniel Wallace MD. He is amazing and has saved my life in a literal sense. If not, check every major medical center near you and check into the doctor’s medical education and reviews. Just taking control can help. Finding one great doctor can open up access to many others. My thought is it is all related to the Lyme. You can do this. I just joined the group and am amazed by all the people who are doing this. Take a moment to breath when you can. Pretend you are giving advice to a friend, then give that advice to yourself. Best wishes.

I am hear because I have GPN that is starting to not respond to medications. I am looking at having rhizotomy. I’m scared too. You aren’t alone. I am trying to follow my own advice.

Hi Nicole.....I have had a consult with a neurosurgeon who diagnosed trigeminal neuralgia, glossopharyngeal neuralgia and occipital neuralgia who has been performing neurosurgery at UCSD for 40 years! I was then worked up by neurology at my request because I have bodywide polyneuropathy, autoimmune symptoms, dysautonomia syndrome, fibromyalgia syndrome, arthritis, sjogren's symptoms, myelopathy neurologic signs and symptoms etc., etc. etc. The surgeon had recommended surgery for the TN and for the GPN. Then after seeing several neurologists who specialize in NEUROPATHY, Cranial nerve disorders including trigeminal neuralgia vs. trigeminal neuropathy, and headache disorders including migraine etc. The TN & cranial nerve specialist neurologist at UCSD new immediately what my diagnosis was before I said anything due to my history and because I had GPN along with the TN and my TN is bilateral. He said if the surgeon had performed ANY trigeminal neuralgia MVD surgery or GPN surgery I would have been SEVERELY disabled because mine is from NEUROPATHY not neuralgia (hard to imagine being even worse than I am now but he said I would have been!). He said lots of people are misdiagnosed by surgeons as having microvascular compression just because the surgeon sees the MRI showing the TN compression and that TN neurosurgeon at UCSD that they no longer do rhizotomy on TN patients anymore due to the complication rate thus I would be worried about this with GPN as well and really get more information. He said he will only perform a rhizotomy on a TN patient who is very old their health makes them not a cadidate for MVD surgery but if a patient is young and can live through regular surgery he would do an MVD for true Trigeminal NEURALGIA caused by compression. I would think he would say the same thing for true GPN NEURALGIA caused by compression since that is what he recommended for me before he understood my health history! It has taken me a year of seeing a lot of neurosurgeons and neurologists to weed out the bad ones and find the good ones and get to the bottom of things. Finally I am being referred by the TN cranial neuropathy neurologist at UCSD and by my neuropathy neurologist to a Rheumatologist who specializes in Sjogren's syndrome and autoimmune diseases to determine if in fact I have an autoimmune cranial neuropathy since we already have a biopsy to show I have a neuropathy and my clinical picture and family history suggest possible Sjogren's. OTHER AUTOIMMUNE DISEASES CAUSE TRIGEMINAL, GLOSSOPHARYNGEAL, OCCIPITAL NEUROPATHY/CRANIAL NEUROPATHIES including lyme disease, MS, etc. etc. I recommend seeing a TN/cranial neuralgia/neuropathy specialist neurologist if you have not already who understands which diseases cause these cranial nerve diseases and when it is caused by vascular compression and when it is not if you have not already done so. And Dr. Daniel Wallace (Rheum) is well known for autoimmune disease at Cedar Sinai in LA but I have not seen him yet...I researched him and obtained a referral and read some of his publications before I found help in San Diego..he seems to really know autoimmune neurologic complications. There is also a good lyme literate Dr in San Diego who is an MD (sorry don't know his name..maybe try google lyme literate doctor San Diego and if interested in going there I can get his name from my friend)... my friend with a lyme diagnosis is currently seeing him..she also has bodywide neuropathy but hers is not the painful type so more just numbness and tingling and itching. However, she has itching scalp (along with burning mouth syndrome) from the cranial nerves which were of my first cranial nerve symptoms before my whole head basically ended up with severe neuropathy pain in most of the cranial nerves so I worry she may get what I have eventually if autoimmune attack on nerves not properly treated. I still may need to go Dr. Wallace in LA if the Rheum in San Diego can't help me..I live kind of in the middle but bit closer to San Diego and of course never want to drive LA traffic. I hope this information helps you make the correct decision with your treatment and that you get an accurate diagnosis for the cause of the GPN. Feel free to personal email me again any time but need a reply email address because can't reply to the board "No reply email." Take Care, Christina

I will set up for private messages. I have Sjorgren’s as well. I was part of a study in SF. I’m sorry you are going through so much. It is not fair and so frustrating, especially when the picture is so unclear. You are in my prayers

Just FYI, its been 6 months since I posted. Looks like I have CIDP- chronic inflammatory demyelinating polyneuropathy. Its an autoimmune attack on the nerves. Having cranial involvement is atypical, so Im still a little leary of the diagnosis, but SCal, it fits with what you were saying about your situation as well and why mine was systemic and not just in my head. I was diagnosed by EMG and sural nerve biopsy. I was diagnosed with oligoclonal bands in the my central nervous system. Apparently this can hit cranial, peripheral, autonomic and central. RIght now I am on a loading dose of IVIG for 5 days once a month. Hoping this works. I just wish they could pinpoint what the pathogen my body is reacting to. I still show Lyme in the blood but it was not very high in my spinal fluid. Anyway, thats my update as to where I am.