Hello I Am New Here

[jodster]

Hello, I am a 33 year old woman who has been experiencing MS like symptoms for about 3 years. I have had 2 c-sections in the past 3 years, as well as prior colonoscopies, a tubal ligation, hernia surgery, and a bunch of bladder surgeries as a small child. During both pregnancies I suffered life threatening bleeds from what they think was the spenopalatine artery, although firm diagnosis has not been made, as angiogram at my age carries too many risks and I have been told not to risk furthur prenancies. I am currently taking no medications, except a multivitamin if that counts. I will try to be as brief as possible. Perhaps dating my symptoms would be easier...... Believe me, it's all heading somewhere. Sorry so long

March/2003: About 2 months of weakness in arms(although not afftecting strength) and pins and needles throughout body)

Had a MRI without contrast of head and evoked potentials(checking for MS) but all came back normal. Eventually sensations left so I felt better.

August /2004: 4 days with severe fatigue(not the kind when you are tired after chasing babies around all day). Fatigue that interfered with my daily activity . Sensitivity to sun and heat

September/2004: IN ORDER .....

1/electrick shock sensations all over body

2/pins and needles all over body, including face

3/incredible left eye pain, lasting about 3 weeks

4/weakness(not affecting strength) in right hand and in both feet

5/legs feeling like jello

6/brain fog

7/a few days of fatigue(severe)

*****these symptoms started at beginning of month and kind of moved from one to another for teh entire montha nd then subsided

October/2 weeks of nothing........

1/left eye pain

2/electrick shock sensations..pins and needles etcetc(add all others)

November/2005 Saw a neurologist who told me based on symptoms from March/2004 and September 2005 that she was pretty sure I had MS(looking at pattern and symptoms) and that she would do an MRI to check it out and then we would start meds in January 2006.The neuro I saw has MS herself so I found her quite kowledgable at time.

Had brain MRI with and without contrast. They came back fine, no lesions, no nothing. The neuro's office called and told me that it wasnt MS based on MRI's and that no follow up was neccessary.Neuro said that symptoms weren't neurological? That the only things the MRI showed was sinusitis and optic neuritis. I asked for a follow up but was told the office was too busy. Anyhow, saw optomologist(Sp) who did some in office tests and said that I didnt have Optic Neuritis, that often MRI shows something non remarkable that may mimic ON.

December/January 2006..... No real symptoms, just some electrick shocks and some burning in feet

March/2006....... the shocks are back more consistently as well as the weakness in right hand and feet. Fatigue can be overwhelming 2/7 days a week. The weakness does not affect my strength.

I have been tested for lymes, MS, vitamin deficiencies, thyroid, Diabetes, etcetc you name it and all my blood work has come back fine.

I know my body and I just don't feel like I did 3 years ago. I know that I have been under a lot of stress, and while my stress levels are decreasing, my symptoms are not. I am taking multivitamins hoping they will help with teh fatigue, but on those days, not much helps at all, it is a fatigue that I can feel in every bone, in my head, and in my chest.

I am hoping you have some ideas or insight or can point me in the right direction. I mean, if this could all be stress related then I will accept that, or maybe due to some form of Depression although I do not feel sad. 2 negative brain MRI's apparently completely rule out MS??? They were done 2 years apart.

My first and second attack were 17 and a half months apart and the symptoms are of a sensory nature. This would be the third episode , at present, and the September episode and this one both follow bad colds.

Anyhow, I hope I am not leaving anything important out. I really appreciate your reply. I just need to know what to do here as I have 2 children under the age of 3 and although I do not (to the best of my ability stress over my symptoms) they are alarming at times and I fear that one day I will wake up and not be able to move at all. The reason I am posting this here is that I was diagnosed with celiac when I was 1 and a half by my ped who had celiac himself. I can't find any records of what test was done. I was taken off the diet for some reason at age 7 and put back on it at age 22 for 5 montsh because I had some serious gastro symptoms and spent 2 weeks in hospital. My endoscopy was done 5 months after I was on teh gluten free diet and the gastro was a bit of an a#$, and said he knew his stuff and that if it was negative, it was negative. I was under teh impression that it would be negative after 5 months of no gluten whatsoever. Anyhow, fast forward til now and since my first pregnancy things have been downhill healthwise. I read somewhere recently that MS can really mimic MS, and that celiac should be ruled out before a MS DX(although I'm not getting one anywhase lol) Anyhow, I never mentioned the past celiac to my neuro because I didnt know it was one of teh things that can cause symptoms, but like I said, reading what I did, I am starting to wonder. I am having the tTG blodtest done next week so I guess I will go from there. I am wondering if anyone has experienced these symptoms before, the neurological ones, before DX and even after, if this is just a hopeful....that it's celiac and not MS lol!!! I should mention that I was tested for B12 and anemia, and they were fine. Thank you in advance so much for your replies. Jody

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[Rusla]

Hi Jody,

Welcome to the board. This is a great place for support. At first your symptoms sounded like mine when I was suffering from pernicious anemia and sometimes I still get them. It is hard to tell they could be associated with celiac disease or not. That is the problem this disease can affect many areas of your body and with over 200 different symptoms it is hard to tell. Sometimes blood tests are not that reliable. The thyroid test for me is not it took ultra sound to find out those problems and an antibody test.

[plantime]

Hi Jody, welcome to the board! Some of your symptoms, the shock, tingling, and weakness, sound like what I suffered with a couple of years ago. My docs found nothing, but a natural healer suggested sluggish liver. My enzymes were normal, but very low normal. I have been taking Cat's Claw and Hawthorne Berries for it, and feel much better. It could also be that you have some nerve problems caused by years of eating gluten. I wish I could give you a more definitive answer!

[jodster]

Thank you so much for your replies. I really appreciate them. So you have had symptoms similar to mine. That is somewhat reassuring. I kind of figure that if I have been eating gluten all these years(I'm 33) and I am celiac there is probably the possibility that I could have caused some nerve damage amoung other things. I really don't want MS(who would ?) so I am still hoping this tTG comes back positive. I will look in to tose natural berries and things as well. Thanks so much for responding. ((((((HUGGSSS))))))

I meant to add that for the last 6 montsh as well I have had this white coating on my tongue that comes and goes. Very pasty. My GP thought it was thrush and I was treated for it 3 times but it obviously wasnt. I did that saliva test which shows if you have too much yeast in your system and it was positive and is every day. Wondreing if that offers any insiught as well. Also, could poisoning your body with gluten all these years let in other diseases and conditions easily?? Just curious. Okay...I am done with questions for today lol...Thanks a lot and good evening to all

[penguin]

My husband's advisor has Celiac also, but he was misdiagnosed with MS. He was actually on MS meds for a couple of years as I understand it before they figured out it was Celiac. So yes, Celiac symptoms can mimic MS symptoms!

[Deej]

I was misdiagnosed with MS before being diagnosed with Celiac Disease. My symptoms were numbness, tingling, red hot swollen feet, exhaustion, brain fog. The neurologist changed his mind once I was diagnosed with Celiac Disease. He decided then that it was likely Peripheral Neuropathy. I still get those symptoms occassionally but not nearly as often and not to the same degree. I don't know if that's helpful to you though.

[Carolita]

Hello Jody. Welcome to the forum.

I'm Carol. I'm also new here. My celiac blood work came back + last Wednesday.

I found it interesting that you said you had yeast in your mouth. You could have Candida Albican, which is yeast over growth in your body and it can cause the same symptoms celiac does. I was diagnosed with Candida Albican about a year ago and I have been on a yeast free / low carb diet since then. I also get allergy shots for it and take Nystatin. This has helped me a lot but I still don't feel 100% better. Two weeks ago I went to see my internist and I told her about the yeast situation (I don't have it in my mouth, I have it in my intestines) and she recommended the celiac disease test because she stated that people following the yeast free diet felt much better from Celiac. On Wednesday the nurse called me to tell me the test came back +. So I have both, yeast and Celiac. Some how I have the feeling they are related. I recommend going to a good immunologist who knows about Candida Albican and believes in it so that they can determine if that is part of your problem as well.

By the way, I too get the tingling feeling on my fingers and feel very tired when I haven't followed the diet. It is a very awful feeling and I don't wish to anyone so I hope you get better soon.

I hope soon you get the diagnosis you need with Celiac or/and Candida.

Carol