Lindz

Ugh. I did not know it does not reverse the nerve damage already there. This cranial nerve stuff has got to go! Thanks for the link to the IG living website. L

First of all can anyone tell why evreyone's post headings are vertical? My view of this board as gone wacko. Anyway.... Hello, everyone, my last post was January when MSA was on my short list. I am happy to say that I have been cleared of that! Other diagnoses have emerged..... My diagnosis - CIDP- be helpful to some of you with full body neuropathy type symptoms. As far as ANS, my issues are super low blood pressure (85/52) but no orthostatic hypotension. I have orthostatic intolerance and crazy sleep epidsodes (not breathing, paralysis) Some nauseau and vertigo when falling asleep. My MAIN issue are a ton of cranial neuralgias and head pressures. This began 3 yrs ago with autonomic seizures, then cranial nerve headaches (trigeminal, glossopharyngeal and occipital) and then full body twitching and burning muscle pain and cramps all over, esp. running down my buttocks, hips, saddle region, upper thighs, calves and some weakness feelings. My mouth burns, my throat burns, my eyes burn, tug, pull, I feel like Im teething, my ears have pressure, my face twitches -- just a mess in the head. I saw a well known neuropathy dr at NYU who immediately recognized CIDP. I was thrown a bit, b/c how could the diagnosis have eluded 3 other EMGS and 8 other neurologists...... but I guess it takes time to develop. He was right on as a nerve biopsy proved it. So I am on IVIG, in middle of my first round this week. I did have a spinal tap the only abnormality being oligoclonal bands (2) in spinal fluid only which show inflammation/autoimmune response in the central nervous system. Sometimes CIDP can do that, he says, but I feel there is something lurking and that really bothers me to not have a cause..... He is convinced though that is it secondary to some other post infectious or rheumatic process. I do have Epstein barr virus that never leaves my blood (early antigen always there) and show positive Lyme exposure although the evidence of Lyme was very weak in my spinal fluid, it was there but weak. He still wants to do a one month PICC line of antibiotics. I have anticardiolipin antibodiies and raynauds and hypermobility and very low serum complements although no rheumy has called it lupus or any other connective tissue disease. I was worked up fully also with a PET/CT for cancer. Negative thank God, except it showed some calcified lymph nodes in a spot suspicious for sarcoidosis. I did have a polyclonal gammopathy and neuro and lung symptoms 16 yrs ago so who knows if that kicked something off. He will biopsy the lung node to see if it the smoking gun in all this.... I feel relieved (VERY) that it is not MSA, but there are so many baddies still out there that get me nervous (like exactly WHAT is in my CNS and is it progreessive? I feel worse every day) He says the CIDP can have CNS effects so praying the IVIG will work to modulate my immune system. Anyway, thats my update. I want to thank everyone for keeping me in your prayers. Im not done yet, so any and all prayers are still welcomed! Still waiting for paraneoplastic panel (which I came up for in serum as " fluoresence noted" why??? But then on Western Blot NOT confirmed- so we are testing the spinal fluid). I don't like having half an answer! So I have CIDP but whats causing it? I know there are a lot of us in this boat. Keep pressing. If you live near NY and want a good dr., I can get you his name. He is a research dr and clinician so hes very well versed in the entire nervous system. He was spot on - the only dr in 3 yrs that confidently knew what was wrong the minute I started talking and he moves very fast with diagnosing which alleviates the test waiting game. Its all literally done in a matter of two to three weeks. The only thing I can't square is the seizures, although he suspects since my ANS was malfunctioning that could be the reason. Also the throat neuralgia I have can sometimes trip the vague nerve into seizures so that could be it too. I just don't know. Its just not clean or clear enough for me but he sounded optimistic that he can get me feeling better in six months. Oh and I do have microhemmorhages on my brain MRI so there still could be some small vessel vasculitis going on here....... Anyway, for those of you who remember my panic, I thought I would let you know! (Still panicked but a tad less!) LOL L

Everyone thanks. Im on the east coast today enjoying a day with my family hunkered down with my family - in snowstorm Jonas. Sylvie, yes, you have talked me off the ledge before and I know you are going thru the diagnostic ringer as well. I appreciate it. Yes, I am seeing a movement disorder specialist. I was referred to a local clinic. I thought I was seeing the MSA guy, which I was excited about b/c he's supposed to be awesome, but found out Im seeing the Chief of the Movement Clinic. While he is not the "MSA guy", he is the chief and expert in Parkinsons and dystonia and with MSA being an atypical Parkinsons, he has got to be more than familiar with it for a start. I decided if there is a diagnosis or follow up, I will ask to see the MSA doctor and go to Mayo, Hopkins, Vanderbilt. I live in NJ. Thanks for the prayers and good vibes.

Lewis. Thank you. Imagine my horror. 2.5 yrs of trying to find out whats wrong with me and to have this diagnosis as the last man standing. Ive been labeled psychosomatic, my family stopped believing in me, the money on testing, etc. Its horrendous. Really, don't want to get on my soapbox, but I would KILL for a normal day of laundry, kids baths, etc without this hanging over my head. Yes, enjoy every day.

Hi everyone, I posted here a few times in the past few months. I had autonomic symptoms start out of the blue about 2.5 years ago. None of them were debilitating. However, at the same time I developed a stiff neck and what I thought were cranial neuralgias. Now I know from a new neurologist taking a look at my case that what I was experiencing was actually dystonia. Dystonia is a stiff cramping or involuntary pulling. Originally in my neck, then in my throat and oral cavity. Its called oromandibular dystonia. I wasn't too worried until recently, when I developed urinary urgency. I know a lot of you have it, but you don't also have the dystonia. At least I haven't read too many stories with that here. So now there is concern I have MSA. Because this type of dystonia is a "red flag" for MSA. And now I have the main autonomic symptom - which is urogenital. The other is OH- I don't have that .... yet. So now its like waiting for the other shoe to drop with the OH. Dystonia is also a first symptom of parkinson so, Im waiting for the parkinson symptoms to show up (in MSA you need the parkinson symptoms as well). Its horrendous. I cry every day. I tell you EVERYTHING else has been excluded. I have been worked up for 2.5 years. I know a lot of you probably don't know a lot about MSA but its terminal. Its the combination of motor and now autonomic symptoms which is the problem. It not just purely autonomic. I wish it were. I see a movement disorder specialist in mid February. I am 47 so in range for it. I also have three children two of whom are 5 and 7. I can't believe I might not be here to see them grow up. Im so scared. If you are a the praying type, can you throw one up there for me. I dont have a good feeling about this.

Thanks. I guess not everyone is a straighforward case of adolsescent POTS! How do you all cope with the, "Well what if it turns into...." It think thats my biggest challenge is not exactly how I feel now but what if this is developing into MSA, or another bad disease. I feel like I keep acquiring new symptoms every day and then I keep reading how a lot of autonomic dysfunction can herald other diseases in the future by years. Im sorry, Im being a fear mongerer and don't want to worry anyone. I have to try and live in the moment. Thanks so much for your replies. I do try and exercise but have cut it down mainly b/c of my psychological limitations. This is mainly mental for me , like how could I go from the highest functioning person to this. I am sorry you are bed bound Sylvie. And thanks for answering my posts!

Hi everyone, I had an ANSAR and no real explanation from my neuro for why all this neurological craziness is happening. Ive developed all sorts of neuralgias, now palpitations, obstructive sleep apnea and Im getting really scared that something sinister is behind this. I was having autonomic "seizures" two years ago (nausea, dizziness, arrythmias, rising sensation), but the EEGs never picked them up. I have not been the same since. I walk around foggy, with a burning headache, head pressure,burning eyes that I feel my eyebrows sometimes droop. Mine are not positional related. Its almost like all the time. I can't get in to see an autonomic neurologist specialist until March. Im really scared. I do have reactivated EBV and had Lyme in the past but can it cause all this? I also had mitral valve repair a few years back but felt Awesome until those crazy seizure-like episodes. Im depressed, anxious, etc. I am going to try beta blockers this week because the neuro thinks that the adrenergic tone of my test results may be causing my anxiety. The only way Im coping is with Klonopin to get me through this. How does everyone deal with the uncertainty and fear? L

YES YES YES. I have all sorts of head and eye pressures. Sometimes like somone pressing me down on top of head too. All day long, sitting and upright. I also feel a tingly head sensation too. Esp. when I get really nervous or anxious. From what I undesrtand its just the nerves acting up. Its my scariest symptom. Always makes me rethink what exactly is going on. I also have been having problems with sensory overload in stores like I just want to shut down (I just tried Christmas shopping and got anxious) and also in long conversations I get weird head stuff like its too much. (Teacher parent conferences were hard on me!) Is that normal to gets sensory overload too?

Head and eye pressures. My head also feels numb and tingly sometimes esp. when I am anxious.

God is so very good. Small miracles and progress every day. )

Hi everyone, I posted my test results yesterday, but think I might reach a larger audience for the specific issue I'm asking about so I'm reposting - My test results indicate normal breathing on Vasalva and Standing yet noted that paradoxically, my parasympathetic increases in response to a sympathetic stimulation. I think this is called PPS and has been posted here years back. Wondering if anyone more recently has it. One of my issues is palpable, crippling, skin crawling anxiety since this began 2.5 yrs ago that has not responded well to psychiatric drugs. Wondering if this PPS phenomenon has anything to do with it, because I was noted to have "adrenergic" dominance. Here are the results: Impression: -The resulting sympathetic to parasympathetic ratio was abnormal with a marked adrenergic dominance. -Although breathing increased normally in response to deep breathing and Vasalva, this patient showed a paradoxical parasympathetic increase to the sympathetic stimulation. -Ortostatsis and postural orthostatic tachychardia syndrome are indicated by this inappropropriate decreased sympathetic response to standing as well as reflex tachychardia. Treatment with centrally acting beta blockers such as Sectral or Coreg. -Patchy skin response on QSART. Suggestive of small fiber axonal neuropathy.

Wow, I thought this was only me. I keep saying that my brain hurts to think. I get pressure, pain and a tingly feeling and am very very anxious. I cannot understand why cognitive activities make me so anxious.

5 minutes standing. I don't think I have hyper b/c nothing about pressure raises.. Now that Im reading the report, I see he mentions "Paradoxical parasympathetic response." I saw a good explanation for it - basically the two systems should be balancing itself out. Problems happen when one becomes more dominant. In my case, when the too dominant sympathetic system raises levels, the parasympathetic, instead of decreasing raises right along with it. So the treatment, whatever that is, is to grab both systems and lower them together to balance the see saw. Thanks for responding. Can I ask, does his line about POTS make me official? Do I have it?

Oh it was not a tilt test. I was just sitting then standing with electrodes and blood pressure cuff. Tilt test in a month.

Oh and I might add I am jumping out of my skin constantly. I keep thinking its my thyroid. (Which I also seem to have recently developed antibodies too as well!)

The jump was 104 to 122 to 130. No they did not test for the c's yet. They are sending me for a tilt table test in December. Will they measure the cathecolmine levels then? I am assuming you asked because it is significant Praxxtor? Thanks!

Hi everyone - my neuro sent me for testing. He is sending me to an autonomic neuro next. But here is what we have. Deep breathing = Normal parasympathetic function Vasalva = Normal sympathetic increase BUT paradoxical increase in parasympathetic function Standing = Postural orthostatic tachycardia syndrome are indicated by decreased sympathetic response to standing and reflex tachychardia (blood pressure normal) Sweat = Patchy decrease suggestive of small fiber axonal neuropathy Impression: Paradoxical parasympathetic responses and excess adrenergic tone Help! What does this mean?

I have noticed this too. Is it normal to get anxious and agitated when multitasking or doing concentration work? I often wonder if I am getting dementia and it scares me. Memory is still very good but I fall apart during stress or doing too many things at once. Is that normal? Please say so! Is the the autonomic dysfunction? Im considering taking anxiety meds just to cope. Had to take a 2 month leave from my job. Help!

I am also waiting to see Dr. Rudnick. I live in NJ. I went to see Dr. Tullo in northern NJ when I first started 2 yrs ago (NJ Faint Center). At the time symptoms were all over the place so he did not think they were dyssie related. However, now, two years later things are much clearer. My neurologist sent me for ANS testing. I am waiting on the results. I have an apptmt with Dr. Rudnick for the cardio side of things.

Thanks everyone. Between the symptoms and the crushing and overwhelming anxiety of not being diagnosed, taking and waiting for test results Im falling apart. Its horrible feeling so bad and getting no answers. I wish something were clear in my case. The only test result that keeps coming back is low C4 and very low normal levels of C3. And a raised IgM. Clearly my immune system is on alert to something but no one can tell me what. Im off to an immunologist in two weeks. And having nerve issues all over and guess what - my EMG was normal. I have no idea how I can be in so much nerve pain with a normal test. I was sure I had a neuropathy. They are taking the biopsy for small fiber next week, so maybe thats it.

Hi everyone, Sorry Ive been a needy Nellie lately with all my posts... Im mid diagnosis right now, still waiting for test results of ANS testing... Okay, so one of my big issues has always been head pressure and eye pressure. The eyes feel like someone has marionette strings and I feel tugging or pulling behind the muscle. Lately when I feel like I have attacks of burning eye where my eyebrows or one eyebrow/eyelid will droop a little - its almost like a bells palsy but not that noticeable. I know some of you have discussed blurry vision. Just wondering about the eyelid. I heard it can be from autonomic dysfunction as well.

Are you actually supposed to sweat on the QSART (not the thermodynamic one). I did feel all the stinging tinglings, but I didn't actually sweat. When I asked the tech and told her, "I feel it" she said that is "good" and no, not supposed to sweat. It just simulates sweat". Does that sound right? Also for my breathing in and breathing out test, I don't believe my heart rate or blood pressure changed that much. Does anyone know what the proper response is? I don't believe I showed any Orthostatic hypotension, but did have the POTS rate increase (at least this is what I could see from the numbers she was writing down). Thanks! L

This is all so hard for me because until about two months ago I was still very active and athletic. Now its all catching up with me, but its coinciding with the sleep apnea, so maybe that is having more of an effect on me than I originally thought. I feel exhausted and unsteady on my feet (yet wired - can't relax). I think I was the opposite of most POTSies b/c at first I was able to exercise a lot and now I can't. I need to compel myself to try again. Ive had a total cardiac workout, no SVT.

I know I've been posting a lot lately. Thanks for your patience So I am 46 now. I am hypermobile, but probably not Ehler Danlos. I had severe mitral valve issues w/ regurgitation as a child. Lots of tachy and palpitations, tingling, etc. That gave way to panic attacks as a teen. I then joined the Air Force and got in shape. Everything was good until a few years ago, when I started to have the nighttime adrenaline surges, head pressures, etc. Everything has been downhill since then and I feel getting worse because of hellacious sleep apnea b/c of breathing issues. I don't necessarily feel dizzy when standing at first, but my heartrate does the 30 beat leap. My blood pressure is stable (always super low) and sometimes increases a bit when standing. Long extended stands are not good for me. And I don't have epsidoes so much as walking around all day feeling weird. Is that normal? 1. I have been to a millions dr's, but none too familiar with POTS yet, so all of this is alot of self diagnosis, but Im confident its in the ballpark given my history. Can POTS "change" throughout ones lifetime in terms of symptomology? I was complaining about the fact that I either stop breathing when I start falling asleep or go to sleep and wake up gasping for air with chest pain - my husband was like, yeah, you have been doing that since I met you, and I realize, he's right. Its just gotten to the critical point. 2. I have read past messages and it seems a lot of members have the same breathing issue. But mine also comes with head pressure/ache/congested issues. I really feel hypoxic while trying to fall asleep, like there Im not getting air in. Its a horrible sensation. I know that POTS is supposed to be better while supine-- is that always the rule?? I have terrible cervical cord stenosis and wondering if there is something mechanical going on as well compromising my breathing. Thanks for humoring me. I am so terrified this is progressing. My brain is always burning and tingling. Wonder if thats a hypoxia thing. I am supposed to get a repeat brain MRI next week and afraid that they will find something. Thanks for listening. L

Hi - Does anyone's dissy include facial pain episodes? I have epsiodes where my eyes start to burn, feel like my eyebrows are dropping, and then my whole face feels burning and tight. With this comes all sorts of facial pains and pressure, sometimes into my throat as well, tightness, etc. I definitely think I have some type of polyneuropathy going on with this. Also, when I get anxious, I can literally feel like my whole body has battery acid in it all the way up until my brain. Also I have a good 10-12 hours of living in me on a daily basis and then IM DONE. I need to get feet up or head down. Its not necessarily a true fatigue, but a different sort of fatigue.... Does this sound familiar to anyone or is it just me?? How am I going to explain this to the new neuro tomorrow without him thinking Im nuts.....