New here, still looking for a diagnosis

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

New here, still looking for a diagnosis

Postby lesley1924 » Sun Jan 05, 2014 6:25 pm

Hi, I'm Lesley. I'm 28 years old and have been dealing with symptoms of something since I was 21. Just recently, (in the past 3 months) I was diagnosed with a gluten allergy and endometriosis. After 7 years I finally thought my symptoms would go away, but they haven't. So I guess I'll start from early on with symptoms and maybe someone can help me out with whether MS should be considered a possibility. I first started getting numbness and tingling in my arms and legs. Some nights I would wake up in the middle of the night and one of my arms would be in the most excruciating pain ever - like I had been clenching my muscles all night and it was so sore and painful. My husband would debate on calling an ambulance because I would be crying in so much pain. I have two bulging discs in my back from a car accident I was in when I was 11 years old, but from what my doctors always tell me I shouldn't be in as much pain as I am with my back. I always attributed my numbness, tingling, waking up at night, etc to my back injuries. Of course, I'm allergic or sensitive to every type of pain medication so I am currently unable to take anything for my back. I went to an urgent care facility a couple days ago for sciatica pain and he gave me steroids, which helped slightly, but I'm still in pain. I get blurred vision episodes from time to time, but I've always attributed that to wearing contacts. Last week was the first time it really scared me. I was at work and my right eye was so blurry that I couldn't see out of it at all, and the color was so washed out looking. I thought I was going blind! It was just so blurry and pale, and it lasted a few hours. I didn't tell anyone at work because I just started this new job and I wanted to make a good impression, so I fumbled through the procedure. But I often times get blurry vision where I'm doing something and I just can't focus on what I'm looking at. Not sure if that's MS related, but it's annoying and scary! Another thing I've noticed myself over these past 7 years is that I have become increasingly more and more clumsy. I drop things often and run into tables and walls all the time. I get so embarrassed at work when I drop a blood sample or sharp scissors! Even at home I drop things all the time. I used to get really severe joint pain where I couldn't grip anything, but that has since gotten better since I've been gluten free and am on vitamin D supplements. (I was tested and had a severe vit D deficiency). Now things just slip right out of my hands. I get migraines and headaches often, I'm always tired after work - like to the point where I CANNOT stay awake. My husband and I get into fights over the fact that I'm always tired. I was also told a few months ago that I could possibly have fibromyalgia due to the fact that when I run into things or my dog jumps up on my leg, (etc) it hurts like crazy - like way more than it seems like it should. Its like a stinging pain that lasts a while and sometimes I drop to the ground. My husband probably thinks I'm the biggest drama queen ever, but sometimes I wish he could feel and see what I feel and see. Even right now I'm having a hard time focusing my eyes and its blurred and pale in color.

At my new job, I have a coworker who's wife has MS and celiac disease, and he mentioned to me that I should talk to a doctor to get tested for it. I moved out to Arizona a couple years ago and haven't quite gotten myself a regular doctor that I feel like I can trust yet, so I'm having a hard time with that. Her doctor is in California and there isn't any way I can make it out there enough to be seen by him. I'm just looking for someone who has MS and deals with the symptoms to give me their opinion about what I'm experiencing and if it at all seems like a possibility for me. I've probably left some symptoms out, but those are the majority of things.

Sorry this is so scattered. I'm having trouble seeing now and feel like I should end this before it gets messy! Thanks for listening/reading this and I look forward to meeting all of you and hearing your opinions.
lesley1924
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Re: New here, still looking for a diagnosis

Postby lesley1924 » Sun Jan 05, 2014 6:32 pm

I guess another thing I should add is that I've been off and on antidepressants for 13 years now. I had a few traumatic events in my childhood and always thought they were the cause of why I always feel so depressed all the time. I also have a terrible immune system. I've had a sinus infection-like issue for years and I just can't seem to get rid of it! I had surgery last year on my foot and my doctor couldn't explain why the incision wasn't healing properly. So he administered steroid shots every 2 weeks until I had enough of it. Now I have a huge bulge of scar tissue, its still red, and sometimes hurts worse than before surgery, and its been over a year since the procedure. I just want to feel better already!
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Re: New here, still looking for a diagnosis

Postby jimmylegs » Sun Jan 05, 2014 7:12 pm

welcome to the forum Lesley.
please seriously consider nutrient testing beyond the vit d3 you have already had done.

i'll sound like a broken record to any regular readers, but please prioritize serum zinc and serum magnesium to address the depression, pain, infection, gluten sensitivity, numbness, tingling, blurred vision, poor colour vision, migraines/headaches, fatigue, fibro, poor wound healing, and so on. and because it is so commonly a problem, serum ferritin.

celiac patients also end up with a wide array of nutrient deficiencies, so it makes sense that the symptoms sound consistent, even if you don't have celiac disease yourself.

there's TONS of info out there on nutrition and diets for ms - all things you can do to optimize health regardless of whether or not you have a specific diagnosis in hand.

here are some of the specifics I have compiled to date on nutrition targets for ms. it's a lot of reading but you can go through it in small pieces at your convenience :) regimens-f22/topic2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: New here, still looking for a diagnosis

Postby lyndacarol » Sun Jan 05, 2014 10:39 pm

lesley1924 wrote:Hi, I'm Lesley. I'm 28 years old and have been dealing with symptoms of something since I was 21. Just recently, (in the past 3 months) I was diagnosed with a gluten allergy and endometriosis. After 7 years I finally thought my symptoms would go away, but they haven't. So I guess I'll start from early on with symptoms and maybe someone can help me out with whether MS should be considered a possibility. I first started getting numbness and tingling in my arms and legs. Some nights I would wake up in the middle of the night and one of my arms would be in the most excruciating pain ever - like I had been clenching my muscles all night and it was so sore and painful. My husband would debate on calling an ambulance because I would be crying in so much pain. I have two bulging discs in my back from a car accident I was in when I was 11 years old, but from what my doctors always tell me I shouldn't be in as much pain as I am with my back. I always attributed my numbness, tingling, waking up at night, etc to my back injuries. Of course, I'm allergic or sensitive to every type of pain medication so I am currently unable to take anything for my back. I went to an urgent care facility a couple days ago for sciatica pain and he gave me steroids, which helped slightly, but I'm still in pain. I get blurred vision episodes from time to time, but I've always attributed that to wearing contacts. Last week was the first time it really scared me. I was at work and my right eye was so blurry that I couldn't see out of it at all, and the color was so washed out looking. I thought I was going blind! It was just so blurry and pale, and it lasted a few hours. I didn't tell anyone at work because I just started this new job and I wanted to make a good impression, so I fumbled through the procedure. But I often times get blurry vision where I'm doing something and I just can't focus on what I'm looking at. Not sure if that's MS related, but it's annoying and scary! Another thing I've noticed myself over these past 7 years is that I have become increasingly more and more clumsy. I drop things often and run into tables and walls all the time. I get so embarrassed at work when I drop a blood sample or sharp scissors! Even at home I drop things all the time. I used to get really severe joint pain where I couldn't grip anything, but that has since gotten better since I've been gluten free and am on vitamin D supplements. (I was tested and had a severe vit D deficiency). Now things just slip right out of my hands. I get migraines and headaches often, I'm always tired after work - like to the point where I CANNOT stay awake. My husband and I get into fights over the fact that I'm always tired. I was also told a few months ago that I could possibly have fibromyalgia due to the fact that when I run into things or my dog jumps up on my leg, (etc) it hurts like crazy - like way more than it seems like it should. Its like a stinging pain that lasts a while and sometimes I drop to the ground. My husband probably thinks I'm the biggest drama queen ever, but sometimes I wish he could feel and see what I feel and see. Even right now I'm having a hard time focusing my eyes and its blurred and pale in color.

At my new job, I have a coworker who's wife has MS and celiac disease, and he mentioned to me that I should talk to a doctor to get tested for it. I moved out to Arizona a couple years ago and haven't quite gotten myself a regular doctor that I feel like I can trust yet, so I'm having a hard time with that. Her doctor is in California and there isn't any way I can make it out there enough to be seen by him. I'm just looking for someone who has MS and deals with the symptoms to give me their opinion about what I'm experiencing and if it at all seems like a possibility for me. I've probably left some symptoms out, but those are the majority of things.

Sorry this is so scattered. I'm having trouble seeing now and feel like I should end this before it gets messy! Thanks for listening/reading this and I look forward to meeting all of you and hearing your opinions.


Welcome to ThisIsMS, Lesley.

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities. IF you do have MS, you have found many supportive friends at this site.

You need to find a good GP or internist there in Arizona, one who is compassionate and enjoys being a "disease detective." I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize."

#1 Compose a timeline and symptom list. (I have highlighted some in your post.)
#2 Discuss your list with your doctor.
#3 Discuss the following suggestions from the University of Chicago in order to investigate peripheral neuropathy. (Tingling/numbness/the pain you described in arms and legs is called peripheral neuropathy.)

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels (You have already discovered a severe vitamin D deficiency.)
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (You acknowledge a gluten allergy; have you had endoscopy to check if intestinal villi are intact and able to absorb nutrients?)
Lyme disease
HIV/AIDS
Hepatitis C and B


On 12/2/2013 Dr. Amy Myers, M.D. spoke about 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.


In part 2 of his 7-part presentation on celiac disease, Gary Kaplan, D.O.,described the 4 forms of the disease:
http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo <http://www.youtube.com/watch?v=chjDo_pL9uE&list=PLbhHLKskAgt8Gqq9vRbW_zLqHjwF7ktRo>

At 0:30 he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility (I also had endometriosis.)
neurologic symptoms (ataxia, neuropathies)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - fibromyalgia is one; complete list available at <http://www.aarda.org/>
migraines

I have no medical background; I offer these personal suggestions to begin your investigations.
All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New here, still looking for a diagnosis

Postby lyndacarol » Mon Jan 06, 2014 1:33 pm

Lesley, although you say you are "gluten-free," I think you may have "been glutened" according to the following article (notice that your list of symptoms parallels the author's symptoms):

http://celiacdisease.about.com/od/Glute ... l-Like.htm
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New here, still looking for a diagnosis

Postby lesley1924 » Sat Jan 18, 2014 6:57 pm

Thank you all so much for your suggestions and advice! I have an appointment on the 28th to talk to a new doctor regarding blood testing and possible MS. Hopefully this doctor won't accuse me of trying to get prescription pain medications!
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