This Is MS Multiple Sclerosis Knowledge & Support Community

New here. Thanks for reading this, as I have NO idea what's happening with my body and could use some insight. As a matter of fact, it just doesn't feel like I'm living in the same body as I was two years ago.

As of today, have had two docs suggest I have a mild case of MS based on symptoms. Waiting for a neurologist referral from GP.

History - 41 year old female
Feb. 2012 was when I started feeling initial ickiness, for lack of a better word. Living in Hawaii when it first started. Thought I was pregnant because had daily diarrhea (my morning sickness with first baby), nausea, dizziness, fatigue). Hot and humid in HI. Moved back stateside and stayed in Bakersfield, CA in June for two weeks. 106 degrees. Torture. So that's where it all began and continued on even after I arrived home in CO for about 4-6 months.

Dizziness every day. On the verge of losing conscientiousness a few times.
Stumbling
Fatigue
Incontinence - This is a big symptom for the docs, it seems.
Unable to recall simple words
Almost fell out of shower a few times when reaching for shampoo, etc. Turned too fast perhaps? Lost balance.
One morning, took half of a loratidine (mild antihistamine) and couldn't walk for a few hours as dizziness was out of control. Read up on it and said folks with MS have low tolerance to antihistamines sometimes.
Sleep Apnea

Now
Stumbling less often, thank God, but still there.
Blurry vision - feels like oil on right eye. It's not constant, more so in the afternoons and evening.
Discomfort in eyes when looking upward
Incontinence is so frustrating and just getting worse. Have to use protection most days.
Find myself stuttering
Inability to recall words becoming worse, too. Frustrating, as I am a writer. Got to have my words.
Complete intolerance of hot showers. Used to love my hot showers...all the way up! Now, have to keep it 'warm' and follow up with cold water. If I take a hot shower, I am exhausted afterward for about an hour or two. All my zip is just gone. Nauseated, too.
Sleep Apnea still waking me up. Snore like a bull moose with a sinus infections sometimes.

My sister has MS and I am aware of the symptoms from her experiences.

I am a vegetarian and have been for 23 years. I get my Vit D every morning and have for months in a flax oil I take daily. Aside from the piece of pizza I just ate, I eat healthy every day. Always have.

That's where I am right now. I appreciate being able to vent on here and just writing this down has helped organize my thoughts some (literally had to type the word 'thoughts' 6 times before I got it right). Another issue is typing; the word I am typing is not the word I am trying to type. It comes out a completely different word sometimes. I look at the screen and am like where the heck did that come from!?) I typically giggle at that one.

Anywho. Thanks again for reading this. Any insight would mean a lot to me, as I am not sharing this outside of my husband and myself. My family has had enough heartache with my sister's dx 7 years ago. She had a real doozy.

-Blueberry

Welcome to ThisIsMS, blueberry.

As you will discover, in this community everyone of us has a unique set of experiences and unique ideas about MS. Mine focus on wheat/gluten sensitivity and excess insulin.

Since you are undiagnosed and still seeking a name for your condition, I wonder if you and your medical team have considered investigating gluten sensitivity, which can develop at any time in a person's life. I know that symptoms can be shared among many conditions/diseases, but so many of yours are listed for gluten sensitivity: daily diarrhea (might be expected from gluten's intestinal effect), fatigue, stumbling (a.k.a. ataxia), word-recall problems ("brain fog").

https://www.enterolab.com/StaticPages/Faq.aspx

What are the symptoms of gluten sensitivity?

Although there may be no detectable symptoms of the immune response to gluten, the typical symptoms people develop occur when the reaction begins to damage the intestines. The symptoms, resulting from malabsorption or improper digestion of dietary nutrients, include abdominal bloating or pain, diarrhea, constipation, gaseousness, or nausea with or without vomiting. It appears that acid reflux in the esophagus, manifesting as heartburn, may be a potential symptom as well. Other symptoms people experience include fatigue, joint pains, mouth ulcers, bone pain, abnormal menses in women, and infertility.

If your GP has not ordered this testing, I urge you to request the relevant blood tests for these antibodies. Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:
Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

Some physicians prefer even to start with genetic testing for HLA-DQ2 or DQ8. Others move on to an endoscopic biopsy of the intestines in 4-6 locations. All of these are notoriously unreliable and can give a false negative result. Recently, a Texas lab claims a higher percentage of accuracy with their noninvasive analysis: https://www.enterolab.com

You are now a member of TIMS; we are here to answer your questions or just to listen, if that's what you need. All the best to you.

Hello and thank you so much for responding to my post so quickly.

I fortunately, do not experience the bowel issues any longer, thank goodness! That was a drag! It only lasted for about two weeks. The other issues lasted much longer.

I have a vegetarian diet now, for ethical reasons. While I am certainly intrigued by the gluten-free lifestyle, do you think a gluten free diet is feasible with a veg diet? There would be a lot of limitations, but shoot, if it made me feel better, that's all that matters (thinking out loud here...HA!). If you have any ideas or resources, it would be terrific, as my husband suffers from psoriasis/psoriatic arthritis at only 34 years of age, and a gluten-free diet would do him some good, too!

Thanks again for your insight and assistance. It means a lot.

Blue

I have not followed a vegetarian diet, but I assume a gluten-free diet is possible within it, with vigilance to avoid nutrient deficiencies. Low copper, low magnesium, low potassium, low zinc are common in celiacs when gluten has damaged the intestines and interferes with absorption.

I think it might be a good idea for your husband to be tested for gluten sensitivity also. Skin rashes, such as dermatitis herpetiformis and keratosis pilaris, are listed as atypical (non-intestinal) symptoms of gluten sensitivity/celiac disease; psoriasis is considered an autoimmune disease, and autoimmune diseases are also among gluten symptoms:

Dr. Amy Myers, M.D. explained gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

I think you can find LOTS of info on gluten sensitivity on the Internet; there is a growing number of GF bloggers and cookbooks – America's Test Kitchen even came out with a gluten-free cookbook about a month ago.

Great information.

Thanks so much. My husband and I will be looking through these.