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Just a Vent!

Posted: Thu Dec 18, 2014 8:58 pm
by Pele
Hi all!

This is more just a vent than anything, although advice is always appreciated. I just think my friends are probably tired of my 'what could it be' health discussions and I don't really have anyone to talk to.

I'm a 27 year old female, currently working full time and also going to school for a second bachelors in Chemical Engineering. My symptoms started with a suddenly weak hand and a lot of twitching in June of 2011. I was horribly concerned, but eventually managed to convince myself that it was a scary fluke when the weakness seemed to go away. The global twitching remained. However, the following spring of 2012 I developed a weakness in my right hamstring, followed about a month later by a kinetic tremor (stronger in my right arm than my left) and cloudy vision in my right eye.

I was frightened enough to go to the eye doctor, who said he thought it was an infection from my contacts and prescribed eye drops. The eye was painful to move, and remained cloudy for around two months before clearing up.

I went to a GP for the tremor and he offered me anti anxiety medication. I was just happy to hear what I wanted to hear (no MS) and went on my way without the drugs.

Mind you, this whole time my right leg is still suffering from weakness. It's important to note that I'm a long distance runner, so at the time I thought it was possible that I'd simply pulled a muscle. But the weakness has persisted, and now in 2014 it is my worst symptom. The tremor is still there but it's not as bad as it was, and is mainly contained to my right arm.

Interspersed throughout this three year timespan were other symptoms including speech difficulty, muscle cramps (specifically my left hip/quad likes to seize up for long, random periods of time), and shooting pain in my shin/foot/toes.

I finally found a GP through my insurance and was referred to a Neuro. I was immediately given an MRI, but the results came in as completely clean. I'm happy for that, but only when I ignore the fact that I've got all these weird symptoms. At this time I'm still running (I gave my leg three months off to no avail) and I'm reasonably certain that my right leg is smaller than my left. I just had a second neuro appointment and he ordered a cervical MRI, a visual evoked potential test, and then blood work for something he was rather vague on. I didn't push the issue on the last because I'm fairly certain he just didn't want me worrying before the results came back. I'm fine with that - don't need any more fuel on the fire.

I guess I'm just confused. I don't want MS, but I definitely have something going on. I'm terrified that my doctor, friends, and family will start to think I'm making things up. Honestly, I'd be willing to ignore EVERYTHING else if I could just run normally again. ):

Sorry for the essay, I'm just glad to write this out and get it off my chest. I'm scared of what could be wrong now that it looks like MS is unlikely. MS is scary, but I know there are worse things too. I suppose I'll just play the waiting game and see what happens.

Thanks for reading!

Oh, and as a side note my B-12 levels are fine.

Re: Just a Vent!

Posted: Fri Dec 19, 2014 8:16 am
by lyndacarol
Welcome to ThisIsMS, Pele.

You know your body best; you have real symptoms that need to be investigated. I am glad to hear that your "B-12 levels are fine" and interpret that to mean that you have been thoroughly screened for a possible B12 deficiency. I urge everyone to keep a copy of every test result; if you have done so, I assume that your serum homocysteine test and your serum (or urinary, which is considered to be more accurate) methylmalonic acid test returned with low values, confirming that you have no deficiency in the blood (As you probably know, the serum B12 test is unreliable and not used alone to determine a deficiency.).

If the B12 in the blood is being carried on the haptocorrin transport protein, and not transcobalamin (which is the transporter used to get it into the cells), there is still the possibility of a B12 deficiency in the tissues. I hope this was investigated with a HoloTranscobalamin (HoloTc) test. More and more experts seem to think this is THE test for a deficiency.

Since your symptoms are consistent with a B12 deficiency and since the Framingham Offspring Study suggests 40% of Americans have suboptimal B12, this still seems a likely possibility to me (I have NO medical background.). If this is been thoroughly ruled out, there are many other conditions to rule out before an MS diagnosis.

You are right: "There are worse things." But there is no effective treatment for MS until scientists know its cause, in my opinion, and the future course of the disease in anyone is unpredictable.

Your vent is understandable; we are always here to listen; I hope you heard my ideas with the tone of my sincere best wishes for you. Please let us know how your situation goes.

Re: Just a Vent!

Posted: Fri Dec 19, 2014 8:31 am
by ElliotB
Rather than play the waiting game, be proactive with supplements and diet and exercise. Help your body heal. An ounce of prevention is worth a pound of cure!

Re: Just a Vent!

Posted: Fri Dec 19, 2014 8:34 am
by lyndacarol
ElliotB wrote:Rather than play the waiting game, be proactive with supplements and diet and exercise. Help your body heal. An ounce of prevention is worth of cure!
But do not take vitamin B supplements before any testing as doing so will skew the test results.

Some people even think the folic acid (vitamin B-9), which is used to fortify flour (and food products containing flour) in the US and Canada is masking a B12 deficiency.

http://www.ncbi.nlm.nih.gov/pubmed/17921401

Am J Clin Nutr. 2007 Oct;86(4):1187-92.

Proportion of individuals with low serum B12 concentrations without macrocytosis is higher in the post-folic acid fortification period than in the pre-folic acid fortification period.

KF Wyckoff, V Ganji
1Rush University Medical Center, Chicago, IL, USA.

Abstract

BACKGROUND:
Large intakes of folic acid may delay the diagnosis of vitamin B-12 deficiency, which could lead to irreversible neuropathy.
OBJECTIVE:
The objective of this study was to determine whether the proportion of individuals with low serum vitamin B-12 without macrocytosis (undiagnosed vitamin B-12 deficiency) has increased in the post-folic acid fortification period.
DESIGN:
Individuals aged >or=19 y with low serum vitamin B-12 (<258 pmol/L) and mean corpuscular volume (MCV) measured between 1995 and 2004 were identified from medical records. The proportion and odds ratios of individuals with low serum vitamin B-12 without macrocytosis by sex, race, and age according to prefortification (n = 86), perifortification (n = 138), and postfortification (n = 409) periods were determined.
RESULTS:
MCV was significantly lower in the postfortification period (88.6 fL) than in the prefortification (94.4 fL; P < 0.001) and perifortification (90.6 fL; P = 0.007) periods. The proportion of subjects with low serum vitamin B-12 without macrocytosis was significantly higher in the postfortification (approximately 87%) and perifortification (approximately 85%) periods than in the prefortification period (approximately 70%; P < 0.001). In a sex-, race-, and age-adjusted analysis, the odds ratio for having low serum vitamin B-12 without macrocytosis was 3.0 (95% CI: 1.7, 5.2) in the postfortification period relative to the prefortification period.
CONCLUSIONS:
Subjects with low serum vitamin B-12 were likely to be without macrocytosis in the postfortification period. MCV should not be used as a marker for vitamin B-12 insufficiency. It is possible that folic acid fortification may have led to a correction of macrocytosis associated with vitamin B-12 insufficiency.

Re: Just a Vent!

Posted: Fri Dec 19, 2014 9:38 am
by ElliotB
Of course, it would be extra nice if there was a cure!