New here, could I have MS?

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

New here, could I have MS?

Postby DannieAnn » Wed Apr 09, 2014 6:53 pm

Hello! I am hipoing to possibly get some advice here.

I am a 28yr old female. I would consider myself to be pretty healthy. I exercise 4-5 times a week and drink lots of water.

In 2012 I was training for a marathon. I didn't train nearly enough, I never ran further than 13miles in training. The marathon was May 2012. In April I woke up and felt my right leg hurting. I didn't think too much of it but I got up and nearly fell over the pain was so bad. I could not put any weight on it. I was very upset in fear I would not be able to do the marathon. I was getting ready to go to the hospital and suddenly the pain went away. The pain came and went intermittently that day. I did go for a run and felt no pain in the foot. At times the pain would last up to four hours. I tried pain reliever, ice, heat, elevation, nothing helped. I got one of the spasms walking to my mail box that day and my boyfriend literally had to come pick me up because it hurt so bad. The pain went from my achilles all the way up my leg.

I called my doctor and he sent me to a surgeon. The surgeon took x-rays and said I had some "arthritic changes." My doctor looked over the x-rays and concluded the same thing. I didn't think it was arthritis at all, far too painful for that.

The pain lasted about a week off and on. The longest it ever lasted was 4hours but sometimes it only lasted about a minute. It felt like my achilles locked up. I could not move my foot at all because it was excruciating pain.

It is 2 years later and the pain still comes and goes. When I get an "attack" I have to stop dead in my tracks. I can't even really describe the pain. Some have asked if it feels like a Charley Horse, I don't think so. I haven't suffered from many Charley Horses in my days but I don't think it's the same. The pain will stay for weeks or months and then disappear for weeks or months.

Other possible symptoms:

In 2009 a CT scan showed something wrong with my bladder and I had surgery to "stretch my bladder." They never really specified what was actually wrong with my bladder. Previous to the surgery I could not hold my bladder. At the age of 24 I had literally wet my pants because I could not hold it. It was as if I never had any notice to urinate, when I felt the urge I had to go immediately. The surgery helped.

In February 2013 my iron was so low that I had to go to the hospital for 6 days to get iron intravaneously. I am iron defficent and have been for years. It did help my fatigue.

My hands and feet are always very cold. If I am sitting down my feet are freezing cold. If I am walking around then my hands are cold and my feet aren't as noticably cold.

Depression- from not having an answer to what is causing the pain

Anxiety- I have been at work at times and experienced one of the these pain attacks and it is somewhat embarassing because it takes my breath away initially because it hurts so bad and I have to sit down. I am also very worried as to when the next attack may happen. I enjoy running and am always worried I may get one of these spasms during a 5K.

What I have done so far-

I went to the surgeon in 2012, x rays and said it was arthritic changes.

I went to my primary care doctor in January 2014 and he sent me for an MRI of my achilles because that is where the pain is. He thought it was tendonitis or maybe bursitis. The MRI came back perfectly fine. No tears,no inflammation, no tendonitis. He sent me to a foot doctor.

I went to the foot doctor January 2014. He looked over the MRI again and didn't see anything either. He said he wasn't convinced that it isn't soft tissue damage. He suggested physical therapy 2-3 times a week. Unfortunately I am unable to do that. I also had a Renal Profile done, everything fine.

I do not think it is soft tissue damage after 2 years. There is something wrong with me that is causing me very bad pain in my foot.

I can live with all of the other things. I have battled with my iron for years and I'm just use to putting up with it. I can wear socks and slippers for my cold feet. I use a heating pad for my hands and feet too. Since my surgery my bladder isn't really a problem.

I can live with the pain in my foot but it is just so frustrating and worrisome to not know what it is. I feel like nobody can relate to the anxiety caused by the pain and not knowing when I will have another episode.

Since this happened two years ago I have spent countless hours trying to research this problem. I always type it in different ways. 9 times out of 10 possible results listed include MS. I have dismissed it for the past 2 years but every other thing I look into never seems to really match what I have going on.

I read a little bit about MS and it matches the Relapsing-Remitting.

My boyfriend is a medical assistant for a neurosurgeon and I was thinking maybe an MRI of my brain could help.

I am open to any ideas or suggestions. Maybe I am way off track thinking it could be MS, I'm just really not sure.

I am sorry this is so long.

Thank you so much for taking the time to read this,

Dannielle
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Re: New here, could I have MS?

Postby CaliReader » Thu Apr 10, 2014 10:05 am

You're right that a brain mri and an appointment with a neurologist would be your next step to find out whether you have ms.
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Re: New here, could I have MS?

Postby lyndacarol » Thu Apr 10, 2014 10:33 am

Welcome to ThisIsMS, Dannielle.

You have said that you are "open to any ideas or suggestions." You will receive many differing ideas from each one of us. Here is mine:

Start with your GP or internist. Request that he test for a possible vitamin B12 deficiency, starting with a serum B12 test, folic acid test, methylmalonic acid test, and a homocysteine test.

I recommend that you watch the following 50-minute documentary about vitamin B-12 deficiency:
Diagnosing and Treating Vitamin B-12 Deficiency:

http://www.youtube.com/watch?v=BvEizypoyO0


Then investigate whether or not you have gluten sensitivity, starting with more blood tests.

Either of these conditions (B12 deficiency or gluten sensitivity) can result in malabsorption of nutrients. Your symptoms are not specific to MS and either of the two previously mentioned conditions can also be defined with your symptoms.

I have previously thought that excess insulin played the main role in my MS symptoms; but information about a B12 deficiency is convincing me that it may be the real key. I will soon have my own testing done in that area.
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Re: New here, could I have MS?

Postby jimmylegs » Fri Apr 11, 2014 5:02 am

hi and welcome dannie :)

has anyone mentioned the possibility of athletic nutrient depletion to you, or referred you for nutrient testing? we get a fair number of inquiries here, from athletes dealing with neurological problems. previous inquiries and related conversation here:
under-25-with-ms-f23/topic24219.html#p221356

there are a variety of well-researched nutrient problems seen in the average ms patient. while ms patient levels will come back 'low normal', healthy controls have levels in the high normal range. conventional docs are most likely to know something about vitamin b12 and vitamin d3. the rest of the nutrients of concern are less likely to be investigated.

the same nutrient issues seen in ms patients can be found in the wider population associated with a wide variety of conditions, including celiac illness. diabetes/insulin resistance, arthritis, pain, circulation, anxiety and depression.

serum nutrient levels seen in average healthy controls:

serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL).
serum selenium: two reference ranges found..
1..........0.90 to 2.00 µmol/L (adults)
..........< 0.3 µmol/L (in adult) - supplementation may be required
..........> 2.5 µmol/L (in adult) - possible toxicity
2..........1.02 to 1.91 µmol/L, OR 80 to 150 µg/L (molecular weight of Se is 78.96)
serum calcium: just a link to p. 11 for now, more later: regimens-f22/topic2489-150.html#p57111
serum uric acid: aim for 290-300 umol/L (about 5 mg/dL).
serum hemoglobin: at least 13
serum ferritin: i used to go for 100, now I go for 80 because some studies have shown increased disease risk at levels 80 and higher.
..........<18 probably iron deficient
..........18-40 possibly deficient
..........41-100 probably not deficient
..........101-300 not iron deficient
..........>300 possible iron overload

a personal friend of mine who in addition to our very active job would do a lot of working out on her own time, started running into some trouble and she went to the doc with a list of nutrient tests that i gave her. her results came back low normal. with diet and a supplement regimen, we pushed them to high normal, and she got better.

if you aim for healthy levels, you may see some or all of your symptoms clear up. one thing you can start on easily is an assessment of your own dietary intake of magnesium (which is easily lost via sweating). to see if your daily routine gets you up to 600mg of magnesium, you can compare against this list: http://www.whfoods.com/genpage.php?tnam ... #foodchart

if you have any questions, feel free to ask!

more info here: regimens-f22/topic2489.html#p15460
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Re: New here, could I have MS?

Postby DannieAnn » Fri Apr 11, 2014 6:09 am

Thank you all so much. I will try to have nutrient levels checked as soon as possible. I do not eat red meat at all so I am sure that I lose some nutrients that way.
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Re: New here, could I have MS?

Postby DannieAnn » Fri Apr 11, 2014 6:25 am

Thank you all so much. I will try to have nutrient levels checked as soon as possible. I do not eat red meat at all so I am sure that I lose some nutrients that way. The odd thing about my foot pain is that it comes and goes. Would that be consistent with a nutrient deficiency? It will really bother me for a few weeks to months and then completley disappear for weeks to months.
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Re: New here, could I have MS?

Postby CaliReader » Fri Apr 11, 2014 1:45 pm

Also, you could ask your doctor to try a low dose of one of the nerve pain meds to see if it would help your foot.
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Re: New here, could I have MS?

Postby DannieAnn » Fri Apr 11, 2014 6:50 pm

Thank you. I avoid medication at all cost. But I don't think it would help because the pain is very intense for about 30seconds to about 10minutes, it varies. I never know when it's going to happen.
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Re: New here, could I have MS?

Postby jimmylegs » Fri Apr 11, 2014 7:31 pm

ugh thought i posted another reply, where did it go :S

the gist of what i said was, if you have an active lifestyle as well as dietary restrictions, it does red flag nutritional issues.

sounds good re testing, and yes having symptoms come and go could be linked to variability in your diet over time. would you say your diet is somewhat seasonal? have you had a think about what your diet is like when you're feeling bad vs when you feel good?

do prioritize action - when i had early symptoms i didn't take it seriously and now i have permanent damage :S

if you are cutting out red meat, you'll need to look at alternative dietary sources of zinc, iron and b12. you could take care of those handily with oysters, clams and salmon.

did you have a look at your intake of magnesium to see if you get 600mg per day?

do see if you can prioritize whole unprocessed and ideally organic foods to meet recommended daily intakes of essential nutrients like zinc, iron, magnesium and vitamin b12. if you end up looking at supplements that will be a different conversation.

as for tests, if you had to prioritize only a few out of the longer list above, i would go for serum zinc, serum magnesium, serum ferritin, serum vit b12 and serum vit d3. if you do have these tests done, do get your own copy of the results and don't take 'it's normal' for an answer!

anon, get in here and talk to dannie about dietary change :)
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Re: New here, could I have MS?

Postby Anonymoose » Fri Apr 11, 2014 8:41 pm

I assume you don't want me to complain about sweet potatoes and boiled kale...or go on about how I almost blew chunks when I ate my first oyster (second to last as well) and first animal in forever. :P

To increase your iron absorption, there are a bunch of things you can do. This page explains some of it fairly clearly. http://www.parentingscience.com/iron-absorption.html I think boiling greens gets rid of some of the phytic acids but I can't stand boiled greens so I've wiped that bit of info from the part of my mind that kinda works. Jimmylegs will have to hop in on that one. I could be confused with something else that interferes with the absorption of something else. Lol. I swear I'm not drinking!

I depend on nuts and seeds (and their butters and supplements) for the majority of zinc, copper, and magnesium. I don't count the greens because I don't cook them properly. (Lest you misunderstand, I am a complete mess nutritionally speaking (fallout of a treatment) and I'm very dependent on supplements right now so who knows if what I do with just food would work). I'd pay a lot more attention to Jimmylegs' regimen thread than to anything I've said here. And if you aren't in a really bad spot with levels, you are better off getting your nutrients through food because individual nutrients just aren't meant to be taken without co factors that are naturally present in foods.

If you are a bread head, like me, sprouted grain breads don't inhibit nutrient absorption as much as regular bread.

Guess who's been on vacation and very lazy/bad about food. :D

Jimmylegs, you must be really tired after your week...why on earth would you request that I talk about food?! You know I'm not a foody!! I tried.

Hope it helps Dannie!!
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Re: New here, could I have MS?

Postby DannieAnn » Fri Apr 11, 2014 9:30 pm

Yes, thank you so much! I have racked my brain for two years trying to figure out why my foot does this. I have spent hundreds of hours trying to find some type of answer. MS comes up a lot. I don't believe I have ever had these vitamin levels checked but when my iron was really low I remember my doctor wanted to have everything else checked too. I guess we forgot to do that. I will definately be calling to see if he can order the test for me. I have not eaten any red meat in probably at least 12 years. When these intense pains come I always try to think "ok what have I done differently to cause it?" Maybe the next time it happens I will log my food. Anything that can help me come to a diagnosis, I will do whatever it takes. The pain has caused me a great deal of anxiety because I never know when it's going to come. I really appreciate all of your help.

My diet is not seasonal at all. My boyfriend is an excellent chef and I have a pretty wide diet. Salmon, pork, crab, shrimp, chicken, aspargus, salad, eggs, a huge variety because he is always trying new things.

I know I am a little weird for this but I really would not want to take supplements. I would rather learn how to include them in my diet more and learn how to make my body absorb them better.

(Side note, after I went to the hospital for 6 days to get the iron intravenously I said to my doctor "I hope I never have to go through that again." He said "you probably will need to again at least once in your lifetime." I'm not sure how bad it was but I'm guessing pretty low. If it was that bad you guys could be right that maybe something else is out of whack. My complaint with the doctor when my iron was low was that I eat healthy, I hydrate, I exercise, but I am still always tired....then we found out my iron was low.)
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Re: New here, could I have MS?

Postby jimmylegs » Sat Apr 12, 2014 3:32 pm

hi again :) sorry to put you on the spot anon, you're just a good one for working hard to get er done with nutrition in spite of all the other stuff you try, and/or how much you hate the foods i suggest haha. and you're a champ with the testing too.

so dannie. sounds like you could indeed have a chronic underlying nutritional thing going on. fun times having a chef for a hubbie though! at least if there is a need for new foods you can have good fun trying out new recipes :D

as for tracking.. maybe see if you can make a habit of logging food just in general? if you can start to try and figure out your magnesium intake, it would be an easy first step. the target is 600mg per day. here's the chart link again: http://www.whfoods.com/genpage.php?tnam ... #foodchart

if you start now, then when and if you have another episode, you won't have to try to think back to try to figure out what might have been going on in previous weeks leading up to it.

as for supplements, it's definitely much better to make healthy whole food the foundation, and top up with supplements if you can't make it all the way with diet. (which again, means food logging to assess daily intake).

fyi, anxiety on its own causes you to use up and excrete essential nutrients. so it could put you at ease to have some testing done and then you know one way or the other, whether you have some nutritional work to do.

when you get in to ask for the next serum ferritin test, if at all possible see if you can at least get these tested too:

serum nutrient levels seen in average healthy controls:
serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...

remember to get your own copy of the results, so that you can compare your numbers to the above! :)

hope you feel better soon :D
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