Waiting...?

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

Waiting...?

Postby kzabethski » Sun Nov 10, 2013 4:19 pm

Hello... I wanted to see anyone here could offer some advice. Im going through a lot of strange symptoms, my dr is now checking me for autoimmune disorders and also MS and this is why..

Back in July i became ill with appendicitis and gallbladder disease. While i was sick i experienced my knee swelling up.I and my dr thought it was runners knee since i was always very active and i love to run. I got surgery in Aug and spent a month recovering, my knee was fine during this time, however it never returned to feeling completely normal. In sept it flared up again, heat made it puffier. Figured i needed to lay off running again. however its never gotten better.

2 months ago, i went to the eye dr for pain, blurry vision, & floaters in my right eye,. He checked the overall health of my eye and it is fine, so he decided to order an MRI of my eyes to see inside after finding out that my my prescription is fine and i've also lost some ability to see bright colors in it. That was surprising to me. They explained optic neuritis to me but didnt say much about MS except that some young women my age(im 24) do develop MS. He said it could be nothing, or maybe a sinus issue. I didnt take any of that seriously and i knew nothing about this optic neuritis.

So fast forward to a week and a half ago. I was awoken by horrible tightening around my sides along with "spasms". I seriously thought it was my kidneys or something it was so incredibly uncomfortable. This happened 2 or 3 nights in the past week. Just this past thurs, i woke up vomiting...thought i had a stomach bug and it very well could've been. HOwever that night, BOTH my knees began aching, i have muscle twitching all over my body..from my shoulders down to my toes..around my knees and my elbows. Pressure on my spine to where it made me nauseous(this first started in july when i got sick & happens off and on). I decided to go to our urgent care because all of these symptoms together were awful. I was there only an hour as soon as the dr walked in he asked if i had ever been tested for anything autoimmune. He ordered the blood work and i saw my primary dr who wasnt thrilled about the muscle twitching or my eye and once again brought up MS. She wants to see what the MRI of my eyes shows(i get it next week as well as my blood work results) and she said i may have to go through another series of MRI's (brain & spine).

My husband and I are both a little scared at the fact that theyre even considering MS. Hes deployed and really worried. Autoimmune disorders do run in my family.. as does fibromyalgia which was my original diagnosis.. first time was when i was 13 because i have had horrible muscle pain and stiffness for 11 yrs as well as bad fatigue. These other symptoms are new... and a little scary. Other small symptoms i have had over the past 6 months are numbness and tingling in my hand... i.e. driving with my hand up or holding my phone my hand will go numb. Same with my feet, say if i cross my legs. Stabbing pain in theside of my head as as my neck and a terrible shooting pain from my head down my back. My hands have shook SOME since i was a baby my mom has always told me. My joints ache.

I honestly wouldn't be worried about MS if it weren't for my eye... im just wondering what your experiences are... if they're similiar.. if its a high possiblity i could have the disease. What to expect over the time of waiting for blood work and getting MRI's.... sorry so many questions! Im sure you all know how nerve wracking it is waiting around.

Thanks for reading all this!!!
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Re: Waiting...?

Postby jimmylegs » Sun Nov 10, 2013 7:34 pm

hey there :) if you think athletic nutrient depletion could be a part of your scenario, I could give you some pointers.

there are a constellation of depleted nutrients seen in the average ms patient, that can be either disregarded or misinterpreted in mainstream ms diagnosis and treatment (with the possible exception of vit b12 and vit d3). the list is similar to the kind of nutrients you could expect to be lost through physical exertion.

this post links to several conversations from earlier this year, related to athletic nutrient depletion:

undiagnosed-f54/topic22852.html#p214058

this one is from 2012

general-discussion-f1/topic20461.html#p195665

there's not necessarily good follow through documented at the links above. just an idea of where i'm coming from when it comes to nutrition for active folks :) if you are interested, feel free to ask questions :D
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Re: Waiting...?

Postby kzabethski » Sun Nov 10, 2013 9:30 pm

Thank you for your response :) I am honestly so confused as to what's going on. I've been drinking lean shakes since August due to my surgery and started taking vitamins almost a month ago. I felt fine in June and then all of a sudden.. I started falling apart. I was very concerned about my hair being so brittle it was breaking off.. That and fatigue is why I started the vitamins.
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Re: Waiting...?

Postby kzabethski » Sun Nov 10, 2013 9:37 pm

Oh, I was reading the second link... Just throwing a couple things out there. In June I was workin on insanity asylum with an OK diet(wish I could afford shakeology). Also, I received the flu shot around 2 weeks ago. I've never had any reaction from it previous years. Would not explain my eye, knees, or spinal pressure... But I did wonder if it had anything to do with these twitchy muscles and just overall feeling like crap.
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Re: Waiting...?

Postby jimmylegs » Mon Nov 11, 2013 11:11 am

sounds like your body is telling you something .. simple things like hair and nails can tell you a lot. do you have easy access to bloodwork so that you can test some levels? either a cooperative doc or a private lab?
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Re: Waiting...?

Postby kzabethski » Mon Nov 11, 2013 1:10 pm

I just had a ton of blood work done. Looking for autoimmune diseases, vitamin deficiencies and my dr added on a few more after my initial bloodwork. She's a navy dr but very nice and now, after all these little things adding up plus the new symptoms, is willing to listen and check things out.ill get my results on the 22nd.
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Re: Waiting...?

Postby kzabethski » Mon Nov 11, 2013 1:12 pm

I've been having so much muscle twitching for now almost two weeks it's driving me crazy. It's moved now to the right side of my face and in my index finger as well.. Just wish I had some answers :/
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Re: Waiting...?

Postby jimmylegs » Mon Nov 11, 2013 2:29 pm

good to hear you've had some bloodwork done. I hope they did more than a standard blood panel with the possible addition of vit b12 and vit d3. re the twitching specifically - do you remember, or can you easily check, if they took a serum magnesium level?
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Re: Waiting...?

Postby kzabethski » Mon Nov 11, 2013 4:49 pm

It's hard dealing with navy drs, when I goto my appt I will ask. I am pretty sure they did check those two you mentioned. I got two results that day which was a normal CBC... Can't remember the name for the other think it started with an S, but I know if it's higher than 20 that's bad, mine was 6.
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Re: Waiting...?

Postby jimmylegs » Mon Nov 11, 2013 5:16 pm

ok. I would expect them to be caught up with the nutrition science to the extent of measuring vits d3 and b12, but not magnesium and zinc (or copper or selenium etc). they are important ones to monitor but at this point are still missed in mainstream practice by and large :( luckily lots of research exists to help guide patients where doctors' info is not up to speed.
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Re: Waiting...?

Postby lyndacarol » Mon Nov 11, 2013 7:47 pm

kzabethski wrote:Hello... I wanted to see anyone here could offer some advice. Im going through a lot of strange symptoms, my dr is now checking me for autoimmune disorders and also MS and this is why..

Back in July i became ill with appendicitis and gallbladder disease. While i was sick i experienced my knee swelling up.I and my dr thought it was runners knee since i was always very active and i love to run. I got surgery in Aug and spent a month recovering, my knee was fine during this time, however it never returned to feeling completely normal. In sept it flared up again, heat made it puffier. Figured i needed to lay off running again. however its never gotten better.

2 months ago, i went to the eye dr for pain, blurry vision, & floaters in my right eye,. He checked the overall health of my eye and it is fine, so he decided to order an MRI of my eyes to see inside after finding out that my my prescription is fine and i've also lost some ability to see bright colors in it. That was surprising to me. They explained optic neuritis to me but didnt say much about MS except that some young women my age(im 24) do develop MS. He said it could be nothing, or maybe a sinus issue. I didnt take any of that seriously and i knew nothing about this optic neuritis.

So fast forward to a week and a half ago. I was awoken by horrible tightening around my sides along with "spasms". I seriously thought it was my kidneys or something it was so incredibly uncomfortable. This happened 2 or 3 nights in the past week. Just this past thurs, i woke up vomiting...thought i had a stomach bug and it very well could've been. HOwever that night, BOTH my knees began aching, i have muscle twitching all over my body..from my shoulders down to my toes..around my knees and my elbows. Pressure on my spine to where it made me nauseous(this first started in july when i got sick & happens off and on). I decided to go to our urgent care because all of these symptoms together were awful. I was there only an hour as soon as the dr walked in he asked if i had ever been tested for anything autoimmune. He ordered the blood work and i saw my primary dr who wasnt thrilled about the muscle twitching or my eye and once again brought up MS. She wants to see what the MRI of my eyes shows(i get it next week as well as my blood work results) and she said i may have to go through another series of MRI's (brain & spine).

My husband and I are both a little scared at the fact that theyre even considering MS. Hes deployed and really worried. Autoimmune disorders do run in my family.. as does fibromyalgia which was my original diagnosis.. first time was when i was 13 because i have had horrible muscle pain and stiffness for 11 yrs as well as bad fatigue. These other symptoms are new... and a little scary. Other small symptoms i have had over the past 6 months are numbness and tingling in my hand... i.e. driving with my hand up or holding my phone my hand will go numb. Same with my feet, say if i cross my legs. Stabbing pain in theside of my head as as my neck and a terrible shooting pain from my head down my back. My hands have shook SOME since i was a baby my mom has always told me. My joints ache.

I honestly wouldn't be worried about MS if it weren't for my eye... im just wondering what your experiences are... if they're similiar.. if its a high possiblity i could have the disease. What to expect over the time of waiting for blood work and getting MRI's.... sorry so many questions! Im sure you all know how nerve wracking it is waiting around.

Thanks for reading all this!!!


Welcome to ThisIsMS, Kristin.

Numbness and tingling in your hand and feet fit the description of peripheral neuropathy; compare the work-up your doctors have done with these guidelines from the University of Chicago:

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

I hope these blood tests have been included in your testing:

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 (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution; brittle or thinning hair is a symptom of thyroid problems)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also – this is NOT the same as a glucose test .)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (These tests are important, as is a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease (Bartman, among other TIMS members, urge this testing.)
HIV/AIDS
Hepatitis C and B

The set of MS symptoms is different for each of us (for example, I have never had optic neuritis, but many others with MS have had it); and MS symptoms are shared by many other conditions, which must be ruled out before MS can be diagnosed. There is no definitive test for MS.

I do suggest that you ask for your own copy of all your test results and keep your own file at home.

Here at ThisIsMS you have found a group of understanding friends who are willing to share our experiences and opinions on MS; do not hesitate to ask your questions. Try to calm your husband's worries about you during his deployment – we will try to take good care of 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: Waiting...?

Postby jimmylegs » Tue Nov 12, 2013 3:07 pm

fyi, these are my actual detailed suggestions:
regimens-f22/topic2489.html
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