Numbness, Sensory issues, Elevated Liver enzymes- What is this?

Posted , 4 users are following.

I am a 23 year old female. I don't use any drugs, drink heavily, or have any serious medical issues that I know of. Several months ago I had numbness in all my extremities that lasted four days and then went away. At the time I also had some trouble performing motor tasks. I would try to move or lift something and it felt like my forearm muscles just constricted instead moving the direction I wanted to move.

After that the symptoms just cleared up and for a month I was fine again. I had all but forgotten about it and then suddenly I was numb in all my extremities again. My lips were also numb. I had the same motor issues. This time I had a burning pain down my back on the sides, and also right under my belly button. I would sometimes have pain in my belly that I thought was intestinal but when I went to the bathroom it turned out my bladder had just been really full. But I had not felt any urge to urinate other than this pain. During this episode I went to class and I was having a lot of trouble following the conversation. I felt foggy, dizzy, slow and confused. I was writing notes and found that it was really difficult to remember the shapes of the letters. Afterwards my mom asked me about class and when I told her about it she decided we should go to the ER.

In the Emergency Room they did a neuro exam and it was normal (no stroke.) They took some blood and urine and they told me my liver enzymes were elevated (ALT128 and AST 60-something). They also said there was blood and mucus in my urine. However, they did not believe the test results were related to the symptoms and so they sent me home and said to follow up with my primary care physician.

That appointment was about five days later. My PCP reran the same tests which showed microscopic hematuria. My liver enzymes had come down but were still elevated (ALT 68 and AST normal). I also had low vitamin D (level was 14). My doctor did not try to interpret these results, but referred me to a neurologist, and put me on a Vit D supplement.

The neurology appointment was three weeks later. The doctor reran all the same tests and also tested ACE levels, blood count, sjogrens antibodies, lime antibodies, and ordered an MRI. At this point all the tests were normal except my vit D was still a little low (level was 20) even after a few weeks on the supplement. The MRI was normal except there was a lot of mucosal thickening on one side of my head. The neurologist said maybe a virus had caused all my symptoms and the odd liver tests. He sent me on my way and said I could come back if I have more symptoms, but for now everything looks good. I have had numbness since then that has lasted only a day or so at a time and gone away again. I haven't gone to the doctor again because it costs to much and so far has been useless anyway.

Also possibly relevant: I was diagnosed as failure to thrive as a baby- I had severe tracheomalacia and GERD, but I was put on a feeding machine and my doctors did not understand why I still failed to gain weight for so long (I was about 10 pounds at a year old). After I started eating solid foods I began gaining weight and became a pretty normal toddler, but I had low blood sugar and was a little underweight all through my childhood. I have continued to have reflux/heartburn issues all my life. As an adult I've been pretty healthy but I have Raynaud's syndrome in my hands and feet and also have occasional migraine headaches.

I've had flu-like symptoms (congestion, caugh, stc.) every time the numbness has started.

I am thinking maybe this is a mild form of Cystic Fibrosis. Is that crazy? I've read some posts by people diagnosed in their 50's. Anything else that seems likely? Am I over-reacting?

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  • Posted

    Hi! I just wanted to see if you had resolved this at all? If not, my sister in law had very similar symptoms minus the cold symptoms. She found that her's was caused by gluten ataxia. She went off of gluten for 3 days and her neurological issues went away almost completely. She was exhausted, numb, tingly, in pain, would loose ability to use limbs, etc.

    It's worth a try.

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    • Posted

      Wow, I really appreciate your words, I had also recently lowered to nearly no gluten. Then because of financial I've been back on some and found myself very dizzy since last Sunday liver ast and alt are so high over 400 1 and over 300 the other. I also was almost completely off sugar I'm wondering if these things have to do with my dizziness to Suzanne

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  • Posted

    I had a similar episode of elevated liver enzymes ALT (SGPT) was 62 and AST (SGOT) was 44. and i also had low Vitamin D Hydroxy 25 was 12 then 17.6 then

    29.6  . So im curious as well if you ever got diagnosed as it might be helpful for anyone with similar occurences.

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  • Posted

    My alt and ast levels are over 400 (1) and over 300 on (1) don't remember which, I read your article and funny but I relate to so much, I've been diagnosed with Reynolds syndrome also, and about 1 week ago I had started with a migraine which turned to severe dizziness, I missed 2 appointments with my liver specialist being an alcoholic in recovery with relapses about every 2 to 21/2 years. Sober again about 9 months and server back problems I feel so alone at times and a mess. I called the liver specialist who pretty much told me get to the er. They did a cat scan of my liver me thinking it has to do with those high levels it came back fine. Something is wrong and hoping to get answers from my primary who did a bone scan. I hope you are doing better and get my response I so need to have communication with people like myself being I'm 52 and homebound most of the time. Please respond back to me Peace and love Suzanne

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