Craziest Neurological symptoms! Read my story!
 

So you want to hear a crazy story? And any neurological geniuses out there --I need your help and input!!

Here is my recent bizarre neuro nightmare:

I was the picture of health and I also had a baby NYE 2012...

Then I had sex on March 12, 2013 and caught some odd virus. (It wasn't an STD as I have since been repeatedly tested for Herpes 1, 2, chlamydia, gonorrhea, syphilis, all the Heps, and HIV.) BUT I WAS really scared it was HIV --and was a nervous wreck --as I somehow was transmitting it to my daughter via breastmilk as we both got extremely ill with fevers, night sweats, extreme fatigue, thick mucus and tears, jaundice, and I had a tingle downstairs. (I also had diarrhea, this lasted every day until I saw a chiropractor, 1.5 months later, but I'll get to that later.)

I went to the GYN and he gave me Flagyl to take (which I prob didn't need.) After taking it for a few days I had an extreme reaction with head pressure and a burning mouth and tongue. Water tasted like liquid fire and I ended up in the ER with this extreme reaction.

The next day I noticed I got very dizzy and then I noticed my arm was tingling, over the month it spread to my feet, hands, face, ears, I even felt it up my nostrils! I had horrible headaches, pressure, dizziness, and extreme anxiety the entire month. Then towards the end of month one, the PN started to let up.

Month two, I suddenly got tinnitus. As I had already seen a neurologist and GP and they told me that the tingling was all a reaction to Flagyl and should go away, but as I got a new symptom I decided to try the natural route, a chiropractor.

I had never been to a chiropractor before and she adjusted my body relentlessly saying I was full of toxins and she was going to help detox me. Afterwards I felt really funny and the next four days had the worst headache of my life; across the bridge of my face, behind the eye, in back of my head. Suicide pain. During this pain I continued to breastfeed. Mistake.

On the last day of these excruciating headaches, my baby started throwing up violently and then had what looked like a seizure two days in a row --and then she went into a trance for four days. Of course I panicked and brought her to pediatrician and they saw it and told me to take her to pediactric neurologist. So I did, but by the time the apt came a week later, she seemed like a normal baby. But I still saw some behavior that was not right (wont smile, laugh, play old games, obsessively biting down on everything.) Looking back I can't help but think that I had massive toxins released into my breastmilk, toxins that neurologically screwed up my baby!

Suddenly the diarrhea was gone. It had turned into constipation.

During this crazy baby week the PN came back. Then I had a cold and then the PN came back with a force I didn't know was possible. It woke me up at night. Always worse in the arms. It started with fatigue -extremely exhausted like I have never been. I collapsed without feeding my children as I was so ill!! I had never done that! Who does that?? I awoke several hours later burning up but the room was freezing. My temperature was only 94.5. My arms burnt like the sun! I ended up in ER again. They sent me home. (I should add that my temp the entire month was around 95.)

I continued to not have a bowel movement for 2 weeks. The constipation was severe. then 17 days and no amount of prune juice or glycerin would work I tried magnesium.

That's when the really crazy neurological story begins!

I only took 1/3 of a 250 mg of magnesium. In 30 minutes I got so dizzy I could not stand. Then, I swear to god, shapes of everything around me started changing. Walls turned round, floors were slanted, sinks were flat. I was freaked. This reaction lasted 20 hours. The next day I felt funny until the afternoon, then I ate a healthy meal, a lentil spinach beet salad. It started happening again, but this time colors were brighter, too bright, sounds were loud, pronounced and echo-like. I couldn't go into a trader joes as my SENSES were too hyperactive. Somehow my body's sensory system was in an extreme heightened aware state from a metabolic reaction! I also got a huge skin lesion on my shoulder/neck area.

And that's not all, suddenly, overnight after the magnesium, I developed acute autonomic dysfunction. I woke up extremely thirsty and felt like I could not breathe, or even figure out how to breathe normally. My heart which was always a perfect slow light rhythm was pounding out of my chest. My chest hurt so much over the following week and my left arm kept getting numb. All the while why I tried to figure out how to breathe. The palpitations were relentless.

This craziness landed me in the hospital again. This time they kept me, for four days.

By the time I had gotten to the hospital, I was a nervous wreck from the food-caused heightened visual and auditory senses and the heart and breathing. Actually the heart and the numb arm scared me the most. The walk I took my baby on everyday I could no longer do without my heart going nuts. And I was practically fasting as I was terrified to eat as the reaction was so intense!

The hospital was a good break, but they were focusing on the neurological issue with metabolizing food. And I'm not sure if it was from all the fasting or what, but it started to go away. The released me saying they were a small community hospital: a place to have a gallbladder removed or have a baby. They were not equipped for this type of complex neurological disease. They recommended I go to a neurologist at a teaching hospital.

I went home and (via connection) made an apt with a top neurologist in NYC. (I hope he can help me. The apts in two weeks.)

So now we are up to date. In the meantime the metobalic reaction hasn't come back (yet) but the heart and breathing come and go and now I have PN over every single inch of skin on my body! I also feel like my insides are always vibrating and I hear/feel the heartbeat loudly in my head. What's worse now is my heart is constantly doing these weird ectopic beats with a thud. It's freaking me out so much that I'm wearing a holter monitor now so my GP can see what I'm talking about.

I also have an appointment with an infectious disease specialist next week. We are not sure if this is viral now? How can this be from an antibiotic??!!

Or is this toxin related? I can't help but feel like the extreme reaction I had at chiropractor meant I was full of neurotoxic something??

Please any neuropathic private investigators out there give me your insight? Doctors are confused and I'm living a neurological nightmare.

P.S. I've had normal blood tests of everything you can think of. Full panel Lymes, all organs, urine, stool, they even did blood tests and sent them to mayo clinic. Nothing. Normal head MRI, CT scan.

I forgot to add I also have daily fasciculations all over and bizarre back pain behind my ribs. Also my billrubin was elevated (but I have Gilbert's syndrome so not sure if related.)

Wow. Im so sorry you are going through this. I have no advice, but hope you find answers. I hope your baby is ok too.

Thank you. This has without a doubt been the most horrific period of my life. Every morning I wake up realizing I'm in a nightmare that has yet to end.

I'm not sure about baby. She is better. I had to switch to formula (which was painful for me) as we were worried about the breastmilk being toxic. She had bloody spit up a few times with the breastmilk. In terms of her nerological condition, she is smiling now, but still seems "off." She doesn't squeel or laugh and won't play any of our old games. Just wants to bite down. It's beyond stressful to witness.

I see two potential problems here.

1) the initial virus, sounds like a form of hepatitis, from the symptoms you describe. Were you tested for liver functions?
Were they elevated? Not all hepatitis is A, B , or C. There are general infections that may occur from other viruses, but they are usually temporary. There are tests for the A, B, and C variants, and those would show antibodies if you have or had one of those infections.

2) Flagyl is metabolized by the same enzyme system as alcohol. That is why a sticker is put on the bottle by the pharmacy to AVOID ALCOHOL. People can inherit an inability to metabolize this drug, and therefore aldehydes build up in the system. These cause all sorts of symptoms similar to Antabuse (alcohol deterrent)
drug which shares the same system.
These are the symptoms of aldehyde build up in the body:
from http://alcoholism.about.com/od/meds/a/antabuse.htm

Flagyl can also cause lesions in the brain. This complicates things for diagnosis considerably. They can resemble the lesions caused by MS. They only show up on MRIs.

I hope the specialist you have found is Dr. Latov, or Dr. Chin, in NY.
Some of our PN posters have been to one of them, with favorable results.

We had a poster Beglet, here who claimed to have gastroparesis from Flagyl... she no longer posts here sadly.

Autonomic neuropathy can affect the stomach, blood pressure, and heart, if the nerves that supply them are damaged by a toxin or infection. It is tricky to diagnose. Sometimes there can be triggers in the environment that set off autoimmune diseases, like Sjogren's or lupus. So I think you will have to wait until you see your specialist.

That's some good thinking there Mrs. D. I have seen a couple of descriptions (on alcohol related forums) of people who decided to drink on antabuse. They match pretty closely with the symptoms described by NBM.

Aldehydes are also formed as a by-product of fructose metabolization BTW.

Thanks. That's excellent information.

I do not drink alcohol. But I am wondering about the viral route. Should I ask the infectious disease dr about the other hepititus viruses?

Actually I already saw Dr. latov. He was the first dr I went to 2 weeks after taking the flagyl. Back then (first week of April), when I went to him, the neuropathy wasn't so bad and he wrote it off as a simple flagyl reaction and said it would be gone in two months. I've called repeatedly after this and he has never called me back or answered my questions. As its getting worse, and severe and bizzare, I'm going to Columbia Hospital's neurological institute. Dr. Louis Weimer instead to see if his team can figure this out. I'm pretty terrified at this point.

Also what could have caused the neuropathies to get set off the autonomic and sensory so quickly? It happened in a matter of hours.

Sometimes I think the mind/body route isn't helping. I've been extremely stressed/depressed during this bizarre neuro illness. Who wouldn't?

P.s. the jaundice was only week one in march when I first contracted the virus.
I also have joint pain too now.

I want to add again that I have Gilbert's syndrome, which means my liver takes a longer time to clear things out than normal and my bilirubin is always raised.

But I did notice that bilirubin jumped significantly from early April to end of May. When I was in the hospital 2 weeks ago.

April 8, 2013 hepatic function panel:
Bilirubin, Total 1.4 (high)
Bilirubin, Direct .02 (normal)
Bilirubin, Indirect 1.2 (high)
Total protein, 7.2 (normal)

May 30, 2013 hepatic function panel:
Bilirubin, Total 2.7 (High)
Bilirubin, Direct .04 (high)
Bilirubin, Indirect 2.3 (high)
Total protein 8.4 (high)

All other hepatic panels were in normal range but were also raised from April. They dismissed these results as they knew I had Gilbert's. but this was high, even for me.

I can't but hope if I figure out what virus or toxic hold is on me, I can figure out these extreme neuropathies. I'm pretty desperate. I feel so sick and have such bad fatigue, I can no longer take care of my kids.

In May I did do a full STD TEST and did not have A,B, or C. What other one could it be?

I'm very interested in the aldehyde theory.

If you are right, then the build up could have poisoned my breastmilk.

Question is I took the flagyl all the way back in March. And I have symptoms now. Could the aldehydes be stuck in my system? Also could it have been a lethal combo with the magnesium oxide?

I had to take Flagyl for a couple days and I was miserable. I couldn't take my pain meds and it landed me back in the hospital. It took days after I was off it to even be able to eat. This was a few months before the PN started. Nobody has been able to tie it together, but it's there.

How was your delivery? Epidural? Congrats on the baby. My husband is a NYE baby too, always a party going on for you!

Magnesium oxide is not absorbed orally. It remains in the GI tract as a laxative.

I doubt it is connected in any way, and is probably a coincidence.

Many viruses can inflame the liver. One is Epstein Barr (mono).
Doctors see liver functions go wonkey with many viral infections.

And while not common, even Herpes Simplex virus can affect the liver:
http://www.ncbi.nlm.nih.gov/pubmed/19930315

When you first came here I suggested you take some thiamine.
I still think that might be helpful. 100mg 3 times a day.
Thiamine is the cofactor in aldehyde metabolism to clear them.

I posted this to you before on an earlier thread.

Toxins damage nerves...and people vary in how their body can repair it...depends on genetics and whether you have the capability to make the growth factors. Viruses also damage the dorsal roots along the spine, and when that happens, there are more global symptoms all over.

This is only one example of the biochemistry involved:
http://en.wikipedia.org/wiki/Pyruvate_dehydrogenase

I don't know if there is a connection between your genetic Gilbert's and your current liver issues. That would be for a specialist to
evaluate. Your sensory issues therefore could be symptoms of another more serious thing. And that is beyond the scope of this forum format.

I so do appreciate all the information you are giving me.

Honestly I'm terrified to take any supplement now. I'm still kind of frightened to eat.

I know the sensory is a major response to something. It got better when I fasted, and I'm scared to death it could come back at any time.

The heart and the breathing is worse today. And the PN moves around a lot. Today it is all over my face and neck besides the regular places.

Pain in my back has been constant. It hurts to even lean back against a chair. Not sure which organ this may be attributed too.

Also the constipation is pretty extreme. Not sure what to do about this one.

I'm putting so much weight on the dr on June 25. I just hope my body can't make it that long. It almost feels like its shutting down.

The single most common cause of PN that is dietary is GLUTEN.

Did you ever try gluten free eating? If you feel better fasting, that may be because you are not consuming gluten during that time period.

Did you take vitamins during your pregnancy and breastfeeding?
Then suddenly stop them? Thiamine would be in them along with folic acid and other vitamins too, that you and your baby need.

I would ask for blood work at the doctor's for B12, thiamine, B6, folic acid, Vit E, and Vit D. Women with new babies can be low in a great many nutrients.

Good luck at the new doctor's visit. Try to write down your history for the new doctor, so that he/she can refer back to it
at their own pace, so as not to miss anything.

Yes - No gluten already. Also I stopped taking a multi vitamin at Dr. Latov's request back in APril because my B6 was high and thought that might be contributing. everything else was normal.

I have a fat FOLDER at this point. Lots of tests, lots of doctors. Nobody seems to have figured this out yet and I'm deteriorating.

I'm still interested in the Aldehyde theory. I think you guys are on to something.

Also wondering if Candida is also a component to this mess?

Candida releases alot of aldehydes into the host as byproducts of its metabolism.

Anyone with a metabolic problem or low thiamine levels, will therefore have symptoms like the list I gave you. Depending on severity, the symptoms will vary in intensity.

Funny you mention candida.

I myself am starting to question the link between candida and peripheral neuropathy. I have started my research and in my opinion there is a link between the two.

Can candida actually cause pn??? That is something I am starting to believe is possible.

Well I got into the neurologist tomorrow on a cancelation --thank god.

Tonight these autonomic symptoms are intense as I have chest pain, can't breathe and my left arm is numb tonight. It has never ben this bad. The veins in my left arm are completely faint.

I'm really scared.

I read that Candida causes acetaldehyde poisoning as well. That candida/yeast-derived chronic acetaldehyde poisoning can cause significant damage and/or dysfunction to a central nervous system.

Don't expect a neurologist to understand Candida issues!

They consider that faux science, etc.

A numb limb? that could be MS.

I got an MRI that ruled out MS and and type of leison. Thank god.

Good Luck at your apt tomorrow. Please let us know how u make out.

Mrs. D., My limbs go numb all the time, wake me up at night, sitting at dinner, pretty much anytime. MS was ruled out four years ago, diagnosis of CMT. I always assumed the PN caused it. I do have nerve compressions body-wide, but neuro dismissed them as part of the package after testing for HNPP. In the absence of brain legions, is MS still a possibility? I do have distant relatives with it.

Good luck at the neurologist today Babymama!

The MRI is revealing for MS.... It is really difficult to say, because CMT is so difficult also to diagnose without DNA testing.

The MS presentation is very complex... you could ask at our MS forum..some of the members went years before diagnosis.

Thanks! Am so excited to get answers.

Not all types of CMT are difficult to diagnose without DNA blood testing. There are numerous other ways such as family history, EMG/NCV testing, etc.

Hi Susanne, Don't you have a son? who was diagnosed with CMT? I can't remember if he had DNA blood testing or what. If so, what type of CMT does he have? At any rate, you both would have the same type of CMT even though you both have different symptoms as symptoms vary greatly even within the same family. I know you know this.

Well today was a bit of a disappointment. He was mainly focused on the autonomic disorders and ordered a few more tests. I felt like he was rushed and kept trying to leave the room --which was beyond upsetting. What's worse is he doesn't want to see me until all the tests are complete. One is autonomic testing which they didn't have availability to book until August! So no answers until then? I don't think I can handle this.

Man, I hate the medical industry, and it IS an industry. All they care about is herding cattle through the office. My sister works in a huge Dr.'s office, and rest assured, they care more about the AMOUNT of people who they shuttle through the door than health of patients.

I would not wait that long.

I personally have learned how to fire a doctor.

If I don't like something, I will not say anything until I quietly begin searching for new options, then when I line someone else up I fire the other doctor.

People are too intimidated by dr's and allow them to control the situation, make us feel stupid, and we take it.

I hate the medical industry. :mad:

So true!

I wish I could fire him, but my husband won't let me. He's tired of me searching for answers going dr to dr.

I have all over PN again today. It's pretty bad. What could cause it to move all over body and sometimes hit every place? I even feel it down my esophagus.

What is going on with my body????!!!!

PN is never the same and always crazy.

Some days are good. Some ok, some bad. Some days I go several days and feel like the Queen riding high until I crash and burn. What prompts PN to come and go and move around? Who knows.

My symptoms recently changed also. I have no idea why.

Your symptoms are way worse than mine and I really hope you find some answers and relief.

Yes, Kitt, have solid evidence of CMT 2, family history, symptoms, tests. And I just found out that my second son is experiencing numb hands and feet, with clumsiness and toe walking. The eldest one is very affected at 28, about to go on gabapentin.
I was just wondering if they could be co-morbid.

Babymama, I am so sorry to hear about your experience. Diagnosis and tests can take a long time, but to treat you like that is inexcusable.

Thanks guys.

Anyone have luck with naturopaths? I really feel like this is all a toxic response. I'm trying detox: the gluten free, sugar free route to see if it helps. So far not much difference. I wonder if I detox for 6 months I can shake this thing?

It's just that the symptoms came on so suddenly from one day to the next. I also have chronic fatigue now. If I go for a walk, I'm in bed for two days following. And I'm a former athlete. I ran for 15 years. So something bizzare is happening.

I think an integrative physician or holistic MD would be better.
Where you are, there should be several to chose from.

Google Integrative physician... and a site comes up to put in
your zip code.

Thanks. I totally agree. I made an apt with top integrated dr but apt isn't until August! I'm in NYC and the popular drs are so hard to get into. I did also find a toxicologist but apt is July 22.

So it happened again. My visual sensory issues are screwed up and autonomic dysfunction is getting bad again. And it makes me completely nauseous. I forgot to add that I took Vit C same time as magnesium before. And the symptoms started again now after drinking orange juice. Coincidence? Could Vit C release toxins from cells? Also I stopped pumping breastmilk (i was pumping and dumping) the past 3 days and noticed my neuropathy got much much worse over all body. Were the toxins in bm being reabsorbed? How is this for craziness, after the three days I decided to pump and my arm neuropathy got better. My arms have always been one of the most painful places. There has to be a connection.

I stopped all citrus fruit and juice years ago. Makes my arthritis much much worse. Some people just cannot tolerate citrus.

Stop the OJ (and Lemonade) and fresh oranges/lemons for
a while and see how you feel. Two weeks is the typical time for
an elimination diet.

Food allergies and intolerances are very common.

Mrs. D, you have so much info, its seriously appreciated. Thanks.

so I've been up all night so far with my feet/arms/hands burning , but what is worse are the palpitations and heart rhythm. I feel the entire bed shaking from my pounding heart and it either is pounding way too slow, skipping beats, or, by a slight move, racing. What are the best ways to deal with this?

I'm new to these autonomic symptoms and they really freak me out. My neck even hurts from the heartbeat.

I'd report this to a doctor. Take your pulse also and log it.

I had pounding like that when I was having the crisis reaction
to my blood pressure pill! This is a serious symptom IMO.

It would be a good idea to have a blood pressure cuff at home so you can take it when these "attacks" come on. I had to keep a log of pressures 3 x a day for 3 months, when I had my reaction, that my doctor insisted upon.

Also you can get pounding like that after a heavy meal, or alcohol use.

Yes. I already have a blood pressure monitor and out of fear, take my measurements often.

Again I don't drink and I have been tested for wavy metals.