Hello, i'm new here and am in desparate need of ANY advice/insight on my body that is apparently not so happy!!
Here is the saga:
31yo female
had a baby 8 months ago (was on heparin during pregnancy due to MTHFR)- 6 weeks post partum had an IUD placed- it perforated my uterus which landed me in the hospital getting blood transfusions. Right before I had the IUD put in I had a wicked virus (presume coxasachie/hand foot mouth- temp up to 103, diffuse muscle aches, sores on hands feet and in mouth/throat).
I obviously felt weak from the anemia for a while.. but never seemed to recover.. and in fact got worse.. I realized one day when I looked in the mirror that not only had I lost my baby weight (40lbish) but I looked THIN (i'm thin to begin with) I was 16lbs lighter than I had been in over a decade..
I then realized I had gone from having one bowel movement a day/every other day my whole life to up to 20 a day.. everything was passing right through me.. I kept thinking this would resolve itself- i was too busy with work and 2 kids under 2 to stop and think much about it.. Finally I got so weak I could hardly hold a spoon up, much less hold my kiddos.. I got severe stomach pains and landed in the hospital again - my heart rate wouldn't go below 120 and I was having all these bowel issues.
I went gluten free at that time (i have familyhistory of celiac and lupus).
colonoscopy/endoscopy showed gastritis and esphoagitis otherwise normal

Thats when the wierd neuro stuff started.. the same week I went gluten free and my intestines seemed to get better (from 20 or so bowel movements a day down to 3 or so) I started gaining weight (still eating gluten free).
First it felt like my right knee was "floppy" then I realized I was walking with a waddling gait (my hips feel weak/akward when walking with my feet close together) I also started waking up at night with my right leg and both arms feeling like they were asleep- but painfully so.. ALL Night long every night this happened.then one week later my forearms ACHED and felt really weak.. I started noticing akwardness in my dexterity in both hands and loss of fine motor skills (which I need in my job).
I then had all over muscle weakness where straining to go to the bathroom I barely have muscle for. I also began twitching/fasiculating all over my body- EVERYWHERE! (I have twitched after exercise/walking since pregnant with my daugher - I was ver ill with her- hyperemsis and on heparin 3 years ago, so it was only the all over twitching that was new).
I have loss of function in my thumbs and all tips of my fingers (like jello fingertips. My thumbs just don't work right for 6 weeks now)
The neuropathy/falling asleep/tingling pains/sensations then moved up from my wrists, to my elbows, then to my shoulders and neck..
Now I am feeling like I am having swallowing difficulty (choked twice today), My tip of my tongue is numb and my speech is slurring when saying certain words.. My legs and arms - everything feels as if it has concrete blocks on it
My face is also super fatigued.. If I smile or laugh my facial muscles ache out of fatigue and then tremble if i push them anymore.


I had an EMG that showed diffuse neuropathy (as the neuro said - my sensory and motor function is like that of a 90 year old- i was running and working out before the IUD). The first neuro said maybe CIPD.. but we'll just see what happens.. ugh.. 2nd opinion neuro doesn't raelly know, but is running LYME and Lupus tests on me and started me on lyrica for the neuropathic pain (which is helping me sleep finally)

My MRI head and neck - normal, labs all normal so far- including heavy metal, B12, chemistries , thyroid. (my b6 was twice the upper limit of normal- I stopped all supplements at that time, but things continue to worsen). My first ANA was 1:80 and abnormally speckled, 2nd ANA was normal. Stool studies thus far normal.

I need help- I am now really freaked out about the tongue/speech.swallowing issue. My neuro just wants to wait for the lyme and lupus tests to come back, but I'm getting nervous.. I don't want to loose my speech .

ANY ideas, would be GREATLY appreciated.. I don't know what to do from here!
Thanks in advance!

Welcome to NeuroTalk:

Your situation sounds very complicated to me.

But I have one question... if you have MTHFR polymorphism that was indentified.... what are you doing for that? I certainly hope you are doing something for that genetic error?

Thanks! Yea.. I am hearing I"m complicated a lot.. when it comes to a medical issue i prefer to not be complicated or "interesting" ha, especially when I'm hearing that from my Dr's!! I just want them to figure this out and fix me already!
They discovered the MTHFR when i had multiple miscarriages after fertility tx's.. I am homozygous C67tt gene, which I hear is the worst . So i take a baby asprin, 4mg folic acid a day.. and B12 and B6 until it was found i was toxic on the B6!!! Never had any blood clots or issues besides miscarriages thank goodness!
I"m desperate for help ... I feel like my body is failing me and no one is goign to figure it out

--like it could be related to nutrient deficiency secondary to your other conditions, especially the MTHFR mutation. Sometimes it takes a precipitating event to tip the scales over and start a cascade, especially autoimmune.

And, celiac/gluten sensitivity itself can cause neurologic symptoms, particularly neuropathy, not just in conjunction with the nutrient deficiency it results in (though that can occur too).

Strongly suggest you take a look at the Gluten File when you get a chance:

http://neurotalk.psychcentral.com/thread1872.html

People with the MTHFR mutation cannot methylate regular vitamins. You need to be taking active forms.

Methylcobalamin (active B12)
methylfolate (active folate)
P5P (activated B6)

You may be testing high in B6 because you are not converting it properly to pyridoxal.

I think you should be tested for MMA and homocysteine too.
MMA will show if you are utilizing B12 normally and homocysteine will show if you are not converting B6 to pyridoxal properly.

bny,

You mention that you are taking synthetic folic acid for your MTHFR. You have a very limited ability to break down folic acid into its active form, L-methylfolate. Folic acid must be broken down in a four-step process in order to be used by the body. You might want to ask your doctor about L-methylfolate (found in NeevoDHA, Deplin, Metanx and Cerafolin). It increases blood folate levels and decreases homocysteine levels more effectively than folic acid and is specifically indicated for women with the MTHFR polymorphism.

It sounds like you have a very complicated medical history and I hope you find the answers you are looking for. Best of luck!

Thank yall so much,, i'll defintely look into the folic acid.. with that mutation i'm also supposed to take B6 and B12, however I was B6 toxic.. so they think some of my neuro symptoms may be from that.. which can take 6-12 months to improve and hopefully resolve.. I'm not very patient, so the waiting to see if i get better or worse game is a little hard.. especially since i seem to be getting worse.. Any ideas on the rest of my issues?? I sure wish i wasn't very complicated- its so not fun being complicated in the medical sense! thanks again!

When I read your post it sounded so much like my father's symptoms. He is elderly but no doctor has been able to diagnose him properly. Waddled gait, anemia, drop in blood pressure, severe fatigue, dizziness, brain fog, and most recently holding his head up with his hand. It's been very scary. I finally did my own research and the waddle gait lead me to Mysternia Gravis. It's an auto-immune problem with the thymus gland.

Not sure if that's the problem for my Dad because this was strictly self diagnosis. Then found a web site that said if you have Mysternia Gravis stop eating gluten and the symptoms for MG will disappear. Gluten damages the nervous system. So I got my Dad to stop eating gluten. 24 hours later the severe fatigue disappeared. I was blown away. It's been less than a week now and he continues to be energetic. His thinking is so much clearer. My father also had ulcerated collitis in the '70's. Gluten intolerance should have been looked at back then, but most doctors don't even think of gluten as a problem. The villi in the intestines gets damaged and the body cannot absorb nutrients properly. It can take up to 7 months or more for villi to repair itself provided you stay gluten-free.

Continue to be gluten-free and with time you should heal. You may have an intolerance to dairy and soy as well. Ask your Doctor about MG. Take liquid vitamins and liquid minerals to help your body absorb them better.