undiagnosed and frustrated

[momtoccb]

I am a 38yo mother of 3 who works full time and is an avid runner. I have always been fit and healthy and had no medical problems. I was experiencing numbness and tingling in my right hand in 9/2013 and had been having intermittent tingling in both of my feet when running for over a year at that time. Both were not that bothersome, but just a weird annoyance. In 9/2013, The tingling moved up into my right arm and I went to my PCP. While I was there, I received the flu vaccine (because it was flu season) and was scheduled for MRI and Nerve conduction studies and had testing for lyme, b12, BG, thyroid, cbc. Over the next two weeks, I went on to have weakness and worsening of numbness and tingling in all extremities and tingling on my face.

Weakness increased until I was unable to grip in my hands and had trouble walking - I felt like I had lead weights strapped to my entire body. I was hospitalized. All labs (extensive check for thyroid, lyme, diabetes, autoimmune problems, vitamin deficiencies, etc) returned normal. MRI brain showed two small non-enhancing ovoid periventricular white matter lesions, but otherwise no diagnosis. Nerve conduction was normal, evoked potentials were normal.



Since hospitalization, I was sent for a 3T MRI with contrast of brain and Cspine. It showed same two lesions - more clearly defined. My symptoms overall have improved but many persist. I have seen an MS specialist once right after I was hospitalized, and then again recently. He reviewed my cervical spine MRI and sees a lesion at c4 as well as the two in the brain. I have also seen ENT - for the dizziness who thinks it is centrally related. I don't meet criteria for MS, but not sure what else could be causing it.

I independently sought out a second opinion from a general neurologist because if I don't have MS, I wanted to get an unbiased opinion of what it could be. This neurologist talked to me and did a brief exam for 15min and then told me I have carpal tunnel and anxiety. I was pretty sure that it wasn't anxiety or carpal tunnel causing my symptoms, but I took anti-anxiety medication for 8 weeks and wore wrist splints for carpal tunnel because I am willing to do anything to figure out what is going on and find some improvement. Unfortunately the anxiety med only worsened my fatigue and the wrist splints worsened my numbness.

Currently my symptoms are:

1. I have a tingling/burning sensation in all four extremities and in my face/scalp and neck. - this worsens when at rest and improves when I am active - but never goes away. I would describe it at times like I have something pressing around my arms (like a blood pressure cuff) and my feet feel like they are surrounded by blocks of ice - I sometimes can't even feel where my feet and hands are. At other times, it feels like my hands and feet are buzzing or vibrating from the inside.

2. My numbness and tingling significantly and immediately worsens in all four extremities if I put my chin to my chest or if I put my shoulders back/stand up or sit up straight

2. I have significant dizziness - I feel like I have been drinking when I have not - worsens when I go from lying/sitting to standing. I also have gone through 3 periods of time 1-2wks at a time over the past 1.5 years when I have motion sickness and bed spins.

3. I have significant fatigue - at times overwhelming - I've never been one to take/need naps, but I feel like I can never get enough sleep


I eat a very balanced diet and take Bcomplex supplements, biotin, vit D daily.
I really feel like I need some support and guidance as to what to do next.

Thank you for reading my long winded story. Be well.

[momtoccb]

I have posted to this site and a few other similar forums hoping to get some kind of response and am wondering why my posts are ignored? I'd love input...are people unable to relate to my story?

Anyway, as an update, I had a repeat MRI of my brain, cervical and thoracic spine and have multi new ovoid lesions at the T9, T10-11 and T11 level in addition to 2 brain lesions. I haven't met with my neurologist yet, but hopefully the new lesions will be enough for diagnosis so that treatment can be started.

I hope everyone struggling to figure out what is going on with them gets the answers that they need, or at least the respect they deserve when discussing their symptoms with their doctor. Please advocate for yourselves so that you get the care that you need!!

[ElliotB]

You saw a doctor/specialist who was unable to diagnose you. Not sure that someone without the necessary training can be of much help in further diagnosing you. Going from memory, I believe 3 lesions is enough for a MS diagnosis. And you have had several attacks.

You can review the McDonald Criteria here:

http://en.wikipedia.org/wiki/McDonald_criteria

Since you obviously have something serious, whether it is MS or not, my suggestion would be to follow a MS diet, exercise without overdoing it and without getting overheated, take supplements (there are probably more you should be taking than you are taking now) and eliminate stress from your life.

Hope you feel better soon!

By the way, what do you consider a 'balanced' diet?

[lyndacarol]

I have posted to this site and a few other similar forums hoping to get some kind of response and am wondering why my posts are ignored? I'd love input...are people unable to relate to my story?

Anyway, as an update, I had a repeat MRI of my brain, cervical and thoracic spine and have multi new ovoid lesions at the T9, T10-11 and T11 level in addition to 2 brain lesions. I haven't met with my neurologist yet, but hopefully the new lesions will be enough for diagnosis so that treatment can be started.

I hope everyone struggling to figure out what is going on with them gets the answers that they need, or at least the respect they deserve when discussing their symptoms with their doctor. Please advocate for yourselves so that you get the care that you need!!

With 140 views of your thread, we are aware of your posts. Some of us may be reluctant to respond publicly, and we use private messages – we have not ignored your posts. We welcome you to ThisIsMS; I think most of us can relate to your story.


I urge you to familiarize yourself with the website: http://b12awareness.org/

Watch the videos and, if possible, read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M Pacholok, RN, BSN, and Jeffrey J Stuart, D.O. (This may be available through your library.)

All the best to you; please let us know how it goes.

[momtoccb]

Thank you both for your responses. I guess I was just getting more and more discouraged with the way that I had been treated as a patient and was hoping for someone to relate to my story and offer encouragement. I do not follow an MS diet at this time, but I will definitely research and figure out what makes the most sense to do. Does anyone have suggestions or is more based on personal triggers/trial and error?

I see my neuro to official review my mri results tomorrow am.

[ElliotB]

There are no simple answers to your questions, especially when it comes to diet. There are many MS diets and they all seem to work for some and not for others. I suggest you do as much reading as you can and make decisions that make sense to you. There is a lot of info on this site. There are many good books as well.

" I was just getting more and more discouraged with the way that I had been treated as a patient"

As a patient, you need to be patient. Let your doctors do their job. What you have may take some time to diagnose or you may have your answer tomorrow. MS can be hard to diagnose - there are hundreds of illnesses the mimic the symptoms of MS. Be patient!

BUT, there are so many things you can do to be as healthy as possible - you don't need a diagnosis to make good decisions for your general health.

[momtoccb]

I saw my neurologist yesterday and have been officially diagnosed with MS. He recommended starting tecfidera as first line therapy. Anyone with experience with this??

[jimmylegs]

Hi and welcome, mom.

re your intro info, i'd refer you to earlier posts here on athletic nutrient depletion, maternal nutrient depletion, and the similarities between those, and the nutrient deficits seen in ms patients.

here are some links you might find interesting:

re maternal nutrient depletion

http://www.thisisms.com/forum/general-d ... ml#p189082

Hi Guys--I'm just wondering if the lack of response is because my symptoms seem so insignificant that they're not worth commenting on (this would be a good thing) or if everyone is just sick of people coming on here and busting into your forums with questions that, really, only a doctor could answer. ...

http://www.thisisms.com/forum/general-d ... ml#p193710

Jimmylegs, I just wanted to thank you again and let you know that things are going SO much better! I've stuck with my vitamin regimen and pretty much all my symptoms have resolved. It turns out, I don't think it was the B vitamins that were making me so twitchy, but that GNC "Active" multi. I switched to this:
http://www.drweilproducts.com/drw/u/PRD ... tamin.html
plus extra zinc, iron, calcium and magnesium and the crazy twitching went away. Also, I started drinking 16 oz. of coconut water (which, as you know, super-supplement-genius, is really high in potassium) and that took care of the lightheadedness--I think my electrolytes were just totally out of whack.
Again, I can't thank you enough--you totally saved me a trip to the neurologist (and countless hours of worry!). Thanks for everything--
Cristin

re athletic nutrient depletion

http://www.thisisms.com/forum/under-25- ... ml#p221356
eg

berto - may I recommend a nutrient status check? your level of physical activity could be draining your nutrient status to a symptomatic level. ms patients on average have a known set of nutrient issues. a lot of the same nutrients can be depleted via exertion. especially if the diet is not quite up to pace. probably in your best interests to check some levels out.

previous inquiries with potential links to athletic nutrient depletion:

jan 2014: http://www.thisisms.com/forum/undiagnos ... ml#p220615

could you post or private message the levels (with specific test type, units of measurement, and range) of b12, vit d, and magnesium? it's KEY that ms patients have LOW TO MID NORMAL results for essential nutrients. 'normal' is not good enough.

dec 2013: http://www.thisisms.com/forum/undiagnos ... ml#p218944

sounds to me like you may want to consider athletic nutrient depletion. the pain, shaking, and panic are all consistent with magnesium deficit. magnesium is easily lost via sweating and physical exertion/stress

aug 2013: http://www.thisisms.com/forum/undiagnos ... ml#p214058

I can help advise on tests and how to evaluate results if you're interested in leaning about and/or pursuing a nutrition science approach. worst case scenario, you rule out depletion as a factor. but at a minimum I would think you should be able to expect some gains from addressing any suboptimal nutrient levels.

jul 2013: http://www.thisisms.com/forum/undiagnos ... ml#p213263

hi and welcome you could get a serum magnesium test to [help] rule out athletic nutrient depletion as a source of your spasms. it's a major blind spot in conventional health care. your serum levels need to be high high normal to avoid deficiency. research has established that deficiency occurs inside the normal range

jul 2013: http://www.thisisms.com/forum/undiagnos ... ml#p212824

I have helped others deal with athletic nutrient depletion... the docs aren't trained to see the electrolyte problems associated with athletic nutrient depletion. I used to have SERIOUS cognitive deficits and muscular issues as well. once I started looking into it, I had multiple nutrient depletion issues. i fixed them and got better.

may 2013: http://www.thisisms.com/forum/friends-a ... ml#p209562

hi goss my antennae fired when you mentioned ballet. I would have a serious look at athletic nutrient depletion. ...

there is a forum for tecfidera here. i can't be of much help in that dept, since personally i had strong suspicions about nutritional influences in my case, that were borne out over the ensuing 9 years through extensive research and lab testing.

diets for ms can be problematic, since you might end up with meat eaters on diets that worked for vegetarians or vice versa. or you can have people who pick and choose what they like about a diet, and end up inadvertently missing vital components. imho dietary approaches are very personal things, informed by assessment of previous diet at a minimum, and in a perfect world, backed up with properly interpreted blood work (and not just for b12 ). if ms is different for each person, the diet should be personalized too. my 2c

[momtoccb]

This is great! Thanks so much for your input. It means a lot that others take the time to respond! I am hoping to see a naturopath soon and have proper nutrient testing. I have always been very thin (115lbs and 5'6") and was an avid runner (40miles/week), worked full time in a busy job and have three kids to run around after. Although I eat well- fresh/real foods in healthy quantities, I likely have some deficiencies with my activity level. I will let you know when I have more info!

[jimmylegs]

no problem

re blood tests with the naturopath - note in particular that the tests often come back 'normal' when in fact status is deficient. for this reason you need to be very suspicious of mid- to low-normal results.

the issue has been documented in published academic research, but has not translated to patient treatment yet, for several key nutrients.

it's very wise to get your own copy of results and take any health practitioner's interpretation of your results with a very large grain of salt.

i have found myself training my own doc AND my own naturopath on proper interpretation of test results on more than one occasion.

it's also very wise to avoid thinking of nutrients in isolation. they interact with each other in important ways that supplementers ignore at their peril.

attention to your diet's nutrient density, as well as inflammatory/anti-inflammatory balancing, is a useful starting place.

if done with caution, chronic nutrient deficits can reasonably be expected to benefit from a short term course of supplements at higher therapeutic doses, as long as careful attention is paid to whether you need them (assessment of past diet and/or bloodwork is useful there) followed by proper balancing of supplements and their nutritional cofactors. longer term maintenance doses of various nutrients of concern will vary from person to person.

i'm curious about details of your diet and your daily vit d3 supplement, can you add any detail on those points?