Doctors can't diagnose - I started thinking it's MS

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

Doctors can't diagnose - I started thinking it's MS

Postby Rigelmeister » Fri Nov 14, 2014 3:02 pm

Hi,

I've consulted to three podiatrists and two neurologists because of severe pain around foot & ankle which starts after 2-3 minutes of walking and after some time, turns into foot drop, disabling the dorsiflexion reflex completely and giving me terrible pain alongside with numbness.

I had x-ray, MRI and EMG scans which showed no problem at all. Everything was perfectly fine according to them. No lesion in tissues, no function loss or damage in nerves & muscles. Everything is as it should be. However, that didn't help me at all and pain gradually increased, which almost completely disabled me. Now, I can't even walk to subway which is just 5min walk from my home.

My lower back MRI examination was also fine. It said radiculopathy but it had nothing to do with my back. So my neurologist and EMG technician together made me do many exercises. It almost took one hour. We also conducted another test of EMG with pins directly into muscles. Even though I had a clearly visible control and sensation loss in my foot, nerves & muscles were again, fine!

Doctors were really confused and told me that we needed further examinations to be able to say something. Here are what I've been experiencing for almost a year now. All of those symptoms are quite strong and the ones that are visible to eye can easily be understood by someone else,

* Confusion and difficulty thinking properly, a blurred mind.

* Balance problems. Sometimes I just feel like "OH I AM FALLING" and stumble.

* Blurred vision. I can't see clearly and if the object is a little far to me, my brain can't focus on what I see. I can't describe this really well. My mind and eyes see what's there, but can't process it inside. That's how it feels.

* Mild pain on right arm.

* Sudden pin and needles sensations and loss of sensation in various areas - face, hands, legs etc. They suddenly come and sometimes go only for a minute, sometimes go for 15 minutes. Then disappear. But they are so frequent that they are like always with me.

* Extreme fatigue even though I do almost nothing. I can't walk because of my foot. I just sit. Even so, I feel extremely tired most of the time.

* Weakness in arms & hands.

So what could this lead to? I drink almost no water. May it be the reason for things like that? I am really scared of MS now. My doctors asked for USG of leg to see if my veins are OK, and also 3 different MRI examinations with contrast - Thoraric and cervical vertebrae alongside with brain.

Do you think those examinations would give an idea to my doctors about what I could be suffering from? Or at least, may I be able to walk properly again?

I had just thought that it was a simple herniated disc, so an operation to my disc would relieve it... But my world is now upside down. I am just 20 years old. Missed many exams because of this. I simply can't walk or do anything. Please share your thoughts.
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Re: Doctors can't diagnose - I started thinking it's MS

Postby Youarethecure » Fri Nov 14, 2014 9:23 pm

Do you have any one in your family that has MS?

I remember missing exams back when I was 19 because I had optic neuritis.. and my world turned upside down as well. Hopefully it is something else and not MS. Just go along with all the testing your doctors want to do. That will rule in or out many different things they will check for.

If it is MS please try and realize that its not the end of the world. I am only 25 years old and male. I was diagnosed earlier this year after a lot of symptoms started along with another bout of optic neuritis.

I had a very similar foot issue to what you are describing. My knee and foot were pretty painful for a week and then my foot went numb and use less. I could not lift my toes up or the front of my foot for over 3 months. It took many months of building it back up with exercises and electronic stimulation with a chiropractor to get it back to normal. Now its 100 percent back to normal like nothing happened.

There are many many different things that can cause symptoms like you are experiencing and that's why it is so important for your doctors to run many tests. I can relate to just about each one you are describing. I know exactly what you mean when you see something but don't actually register it or something, like you said its hard to explain.

If it is MS there are many things you can go to better your situation. Exercise, diet, nutrition, medication and lifestyle changes greatly have an impact on MS. No matter what it is you want to be as healthy as possible so exploring diet, exercise and nutrition is a great start.

I hope the best for you,

Chris
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Re: Doctors can't diagnose - I started thinking it's MS

Postby jimmylegs » Sat Nov 15, 2014 7:14 am

hi and welcome, rigel :)

sorry to hear about your symptoms :( frustrating and scary.

i was interested to read about your lack of consumption of water - what else do you drink through the day? are you thinking part of your problem could be dehydration?

one of several things i can relate to in your story is the fatigue - in my case there were several things going on but dehydration was definitely in the picture and has been since i was in high school (debilitating headaches when working out with the gymnastics team).

protein, iron and magnesium were all part of the longer term scenario, but still if i feel tired in the afternoon, i can get a boost from having some water.

can you share any more info about your day to day habits re food, fluids, meds/supplements, physical activity levels etc? have you made any changes to your long term status quo since developing symptoms?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Doctors can't diagnose - I started thinking it's MS

Postby lyndacarol » Sat Nov 15, 2014 8:34 am

Rigelmeister wrote: Please share your thoughts.

Hi, Rigelmeister. Welcome to ThisIsMS.

Have you been thoroughly screened for a possible vitamin B12 deficiency? (A serum B12 test alone is not adequate to find a deficiency.) Check out this website: http://b12awareness.org/

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
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Re: Doctors can't diagnose - I started thinking it's MS

Postby Rigelmeister » Sat Nov 15, 2014 9:29 am

Hi all!

Firstly, thanks a lot for your answers. I have nobody in my family with an illness history. Let alone MS, they don't have anything else either. I am the only one suffering from this kind of symptoms.

My lifestyle is horrible to say the least. My physical activity is ZERO since I can't walk. I didn't get checked for B12 specially but my creatinine and uric acid level are high which are sign of a kidney disfunction. Most of the time I drink soft drinks which contain horrible amounts of sugar. If I drink 200 ml of water a day, I drink close to 1 liter of soft drink. Dehydration should be a problem for me, but I am not sure if this could be the reason for everything.

Since I always order my food and they are mostly very unhealthy, I probably have problem with everything my body needs - minerals, proteins, vitamins etc. Because what I eat, mostly junk and fast food, contain almost nothing I need.

So yeah, I am leading a very unhealthy lifestyle but I am not sure if those all could cause my troubles...

A side note: I don't have diabetes. It's known to damage nerves and give foot pain in particular, but my blood tests showed that I don't have diabetes. I am close to it, actually. Sugar level in my blood, or whatever it's called, is normal but close to high.
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Re: Doctors can't diagnose - I started thinking it's MS

Postby Youarethecure » Sat Nov 15, 2014 11:07 am

Whether it is MS or not, being that unhealthy is very bad for you. Whether it is the direct cause or not, being so unhealthy is making whatever this is much worse for you.
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Re: Doctors can't diagnose - I started thinking it's MS

Postby jimmylegs » Sat Nov 15, 2014 11:32 am

hi again :) sorry to hear the lifestyle is less than ideal, shall we say! agree wholeheartedly with YATC.

i would not recommend keying in on dehydration as something that should be able explain everything - not by a long shot. in fact, i specifically mentioned that it was not the only player in my own scenario, either.

if it's any comfort, high uric acid is not typically associated with ms, but may be associated with dehydration. "chronic dehydration
represents a real lithogenic risk factor, mainly for uric acid stones" http://europepmc.org/abstract/med/8230496

high creatinine can also be linked to dehydration via impaired kidney health - you need to be properly hydrated to maintain good renal function.

studies on cellular hydration http://scholar.google.ca/scholar?q=%22c ... _sdt=0%2C5
note in particular: "Cellular hydration can change within minutes under the influence of hormones, nutrients, and oxidative stress".

you might want to touch base with TiMS member THX1138 to discuss his previous issues with dehydration even with high water intake - he needed to make some adjustments to nutrient status in order to benefit from fluid consumption.
related info (in second half of post): general-discussion-f1/topic24921.html#p226313

i would strongly suggest some diet and lifestyle changes, if only as a test to determine which of your various issues are related to your current status quo, and which are not. essential macro and micro nutrients are not called 'essential' for nothing!

re your elevated glucose level, i'll be interested to see if you have a serum zinc level on file also - related reading:
Effects of oral zinc gluconate on glucose effectiveness and insulin sensitivity in humans
http://link.springer.com/article/10.100 ... 141#page-1
"This study suggests that zinc improves glucose assimilation, as evidenced by the increase in Kg, and that this improvement results mainly from an increase in glucose effectiveness (insulin-like effect), rather than an action on insulin response or insulin sensitivity"

where do you live, roughly? i'm curious how easy or difficult it might be for you to access nutrient dense food options via ordering in, given your mobility challenges.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Doctors can't diagnose - I started thinking it's MS

Postby Rigelmeister » Sat Nov 15, 2014 2:42 pm

Thank you so much!

I live in Turkey, Istanbul. As I don't have a serious condition except for not being able to walk, I think I can get my health back - at least make my kidneys work better. There is a supermarket very close to my place, so I think I can buy fruits and some vegetables. The main reason for me to eat out is simply laziness. But now I gotta be more careful and maintain a healthy lifestyle.

Soon I will have blood tests for creatinine & uric acid levels alongside with B12. That will give me a better idea of what could be wrong with my brain or body in general.

My problem occurs only when I walk for like 2 or 3 mins, so I think even though it won't be easy for me, I can go and buy some stuff from supermarket. If there is nothing serious with my auto-immune system, I think plenty of water and fruit & vegetables will do me fine. If not, and if I have MS... Well, then let's see what happens!

I am REALLY scared of losing my feet and sight. That has always been a phobia for me - to lose sight or some important ability like holding things or walking.

Just a year ago I played ping pong, basketball and did ice skating almost every day. Now, it's a big deal for me to leave the apartment to go to supermarket, which is just 2min walk from my home. I've been in the same grade for 3 YEARS now and I will also fail this year due to my problem, simply because I can't attend classes and exams.

My foot may heal, but psychological part of this adventure has been devastating for me. My English is actually much better than this but I can't even write properly. I can't think freely. My mind and soul is in a complete mess, which only worsens things for me. I have nobody around to care or support. I just feel lonely, sick and useless. I understand, that is a sickness and it can find you at any age. But... Being unable to walk for an UNKNOWN reason at the age of 20, being unable to leave home... That's terrifying for me. Maybe my nerves and muscles will come back to life, but my soul is destroyed.
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Re: Doctors can't diagnose - I started thinking it's MS

Postby jimmylegs » Sat Nov 15, 2014 4:05 pm

no problem :)

if you are interested in learning whether your nutrient levels place you at higher risk for chronic illness in general, then at your next tests for Cr, UA and B12 you might also want to ask for serum zinc, serum magnesium, and serum 25(OH)vitaminD3.

i am glad to hear you have access to healthier food options and are willing to make some changes!

here is a file which provides recommended daily amounts for essential vitamins and minerals
http://www.crnusa.org/benpdfs/CRN012benefits_recs.pdf

here are some lists of healthy nutrient dense food choices, with mgs per serving, for the nutrients mentioned above
magnesium http://www.whfoods.com/genpage.php?tnam ... #foodchart
zinc http://www.whfoods.com/genpage.php?tnam ... #foodchart
vit B12 http://www.whfoods.com/genpage.php?tnam ... #foodchart
vit D3 http://whfoods.org/genpage.php?tname=nu ... #foodchart
vit E http://www.whfoods.com/genpage.php?tnam ... #foodchart
omega 3s http://www.whfoods.com/genpage.php?tnam ... #foodchart

note that for the dark leafy greens such as chard, spinach and kale, the mgs per serving are based on 1c of *cooked* greens. chard and spinach are boiled to reduce oxalic acid. chard 3 min boil, spinach 1 min boil. kale is a 5 minute steam.

another way to boost magnesium status is via soaking - if you can find magnesium chloride flakes or epsom salts and use according to package directions, it can help.

know that we are here for whatever support we can offer :) and also know that magnesium therapy may even help with mood - you might be surprised at its ability to help you cope even with the current depressing situation. good luck with researching recommended amounts and which foods you can find locally to try to meet those dietary targets. if you have any questions, feel free :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Doctors can't diagnose - I started thinking it's MS

Postby jimmylegs » Sun Sep 17, 2017 9:42 am

hey zyklon i found this while looking for something else. a compatriot - you'd said turkish men don't look after themselves too well!
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10701
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Re: Doctors can't diagnose - I started thinking it's MS

Postby Zyklon » Sun Sep 17, 2017 1:07 pm

OMG he is me!!! Correction: was me...

Education about self care is annoyingly bad in Turkey. We are industrial food heaven, 1 USD hamburger menus here. Surprisingly we are one of the easiest countries to get DMD treatments in the world. Funny heh?

My guess:

"Confusion and difficulty thinking properly, a blurred mind", "Sudden pin and needles sensations", B12 and other B deficiencies
"Balance problems", "Mild pain on right arm", "Weakness in arms & hands", dehydration, not enough physical activity, magnesium deficiency
"Blurred vision" B1, zinc, C, E, can be lots of things
"Extreme fatigue", iron deficiency or thyroid problems
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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