Terrified about a possible diagnosis

[sandy05]

Hi everyone,

Im new here and could really use some advice. Im 22 years old, I just graduated from college and am in the process of applying to medical schools. However, Im having some set backs and I've never been so scared in my entire life. My grandmother passed away a year ago after battling MS for 40 years. She was diagnosed at 16, got married and had 3 kids and was paralyzed for the rest of her life. They were extremely poor and back then in her country there wasn't treatment or therapy to help her. She spent 35 years of her life in one room, never even able to look outside her window (no wheelchair). And now, one year after her death Im experiencing similar symptoms. My fiance is a doctor and my mother is so familiar with the disease, they both are insisting I have MS and that I go see a neurologist. Im terrified to go, my culture is not very accepting of any diseases and Im scared this may mean the end to any future as a doctor.

I have been having unexplained pain on my left side for 6 months now. I had a mammogram and ultra sound done to make sure it wasn't cancer or an infected lymph node. Everything came back negative. In the past month or so things have gotten much worse. The pain has now spread to my entire left side from my arm down to my leg. My left arm and leg go numb and then pins and needles. My arms ache all over like the bone itself is achy. I get sharp pain in my left hand and the bottom of my left foot. Im exhausted all the time no matter how much I sleep. I always feel like a ton of bricks fell on top of me. The other day my left foot felt like it was on fire as well as my lower back. I have a long history of migraines but for the past week or so I have had so much pain in the back of my head that won't go away with medicine. Also, my vision is beginning to blur in my left eye. It comes and goes.

I know I should go see a doctor, but Im so scared of what they will tell me (dumb I know since I want to be a doctor too). I just want to know if what Im experiencing is just MS related or could it be something else less serious? And if it is MS, with my grandmother's history will I be paralyzed too? I watch her wither away and die and Im so scared that I will have the same life. If I do have MS, will I be able to get married, have kids, and life a normal life? Or will I have to give up on medicine and a family? Please help me, I know nothing is certain without testing but I could really use some advice to help me have the courage to go to the doctor.

Thanks,
Sandy

[lyndacarol]

Welcome to ThisIsMS, Sandy. The symptoms you describe COULD be MS, but they could easily be due to another condition.

Since you asked for any advice, I offer my standard action plan recommendation:

First, take a deep breath. You may not have MS at all. IF you do, you have found many supportive friends at this site. You will find many different ideas at this website--as a group, I think we agree on a few basic steps.

Second, work with the GP with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." Begin with a thorough baseline examination including blood tests for your cortisol level, glucose AND insulin levels, thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), etc. Ask for a copy of all your test results for your own file.

Third, if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS.

All the best to you.

[jimmylegs]

seconding LC re healthy diet.

welcome to the forum sandy. whatever is wrong, ms or otherwise, my approach is the same: match the nutritional status healthy people via lab test monitoring.

regarding the specific symptoms you mentioned, the pain, fatigue and vision problems may indicate potential issues with suboptimal vitamin d3, magnesium and zinc.

i think it's always wise to look at the nutrition angle, address any potential imbalances, and then see what symptoms you might (or might not) have left to deal with.

if you're interested in the nutrition idea, feel free to ask questions. you might like reading my signature links below as well. imho the nutrition approach is a good way to take control while you wait for the question marks about dx to resolve.

re the migraine history you mentioned:

Low Brain Magnesium in Migraine
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
"Brain magnesium was measured in migraine patients and control subjects using in vivo 31-PhosphorusNuclear Magnetic Resonance Spectroscopy, pMg and pH were calculated from the chemical shifts between Pi, PCr and ATP signals. Magnesium levels were low during a migraine attack without changes in pH. We hypothesize that low brain magnesium is an important factor in the mechanism of the migraine attack."

Serum and Red Blood Cell Magnesium Levels in Juvenile Migraine Patients
http://www.ncbi.nlm.nih.gov/pubmed/7868328
"Recently an important role for magnesium in establishing the threshold for migraine attacks has become evident. Accordingly, we measured serum and red blood cell magnesium levels in juvenile migraine patients with and without aura interictally. In comparison with normal subjects, migraineurs had significantly lower serum and red blood cell magnesium levels."

question: do you have academic access to full text versions of these studies? i'd love to see the serum and rbc values in these patients and controls.

Serum and salivary magnesium levels in migraine and tension-type headache. Results in a group of adult patients
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
"It has been suggested that magnesium plays a central role in different etiopathogenetic conditions involved in the onset of migraine. We measured, by atomic absorption spectrophotometry, serum and salivary magnesium levels in drug-free migraine patients with and without aura and in tension-type headache patients. Migraine sufferers with and without aura and tension-type headache had significantly lower levels of serum and salivary magnesium concentrations in the interical periods than a group of healthy young individuals. Serum magnesium levels tended to be further reduced during attacks in all patient groups studied. A statistically significant decrease in salivary magnesium levels was evident only for migraine patients with aura. Serum magnesium levels and to a lesser extent salivary magnesium levels might express indirectly the lowering of brain extracellular magnesium concentration which occurs in migraine patients both in the intererictal periods and ictally."

there's more research out there but that's a start. if you get a test ensure your levels are at least 0.90 mmol/L. the lower half of the normal range is associated with symptoms of magnesium deficits. if you want me to dig out that study i will, just did a quick search without success, but i have definitely linked to it before.

fyi, magnesium-rich healthy food info: http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

magnesium is a very challenging nutrient to address with supplements so if you want to follow up on that make sure you pick a good soluble, organic form for best chance of proper absorption.

again, welcome to TiMS, try to stay positive!

[sandy05]

Thank you both so much for your responses. I will definitely be watching what I eat. Im a pretty healthy eater already (mostly home cooked meals) but I will watch the carbs. And I will make an appointment with my doctor and get it checked out. Thanks so much!

[sandy05]

So...things have gotten worse in the past two days. My left leg is shaking uncontrollably. Im losing my balance and I feel shaky when I walk. I saw my doctor today. They did blood work to test for vitamin d, b, b12 deficiencies. She is checking my thyroid and did a urine test to rule out uti. She gave me a referral to an ophthalmologist for the blurred vision and neuritis. I have an appointment on Monday with a neurologist. I wanted to know what to expect? Will he do an mri and if so, if no lesions are present does that mean its not MS for sure? Or is there still a chance it could be MS without lesions showing on the mri? Any help would be appreciated.

[lyndacarol]

So...things have gotten worse in the past two days. My left leg is shaking uncontrollably. Im losing my balance and I feel shaky when I walk. I saw my doctor today. They did blood work to test for vitamin d, b, b12 deficiencies. She is checking my thyroid and did a urine test to rule out uti. She gave me a referral to an ophthalmologist for the blurred vision and neuritis. I have an appointment on Monday with a neurologist. I wanted to know what to expect? Will he do an mri and if so, if no lesions are present does that mean its not MS for sure? Or is there still a chance it could be MS without lesions showing on the mri? Any help would be appreciated.

Sandy – In the appointment with the neurologist, he will perform easy, noninvasive, painless tests on you in the office to establish a baseline. Most likely, he will order an MRI to be done in the near future – this may involve an injection of gadolinium, a contrast medium, but other than that, an MRI is noninvasive. He may also want you to have a lumbar puncture, which involves taking fluid from the spine (not everyone diagnosed with MS has had this done – I never had a lumbar puncture). The first three MRIs that I had over several months were completely normal, I had no lesions. There can be a chance it could be MS even with no lesions showing on the MRI.

Go to your appointment with a list of your symptoms and a list of your questions – I find it easier to think of these things in the quiet days before an appointment. Good luck.

[jimmylegs]

hi sandy
sorry to hear your not doing well :S try to make sure they test your serum magnesium and serum zinc, if at all possible!

[sandy05]

Thank you so much lyndacarol and jimmylegs, I took your advice to heart and came up with a list of questions and asked about all possible tests. My thyroid, TSH, and B12 all came back normal. My vitamin D levels are extremely deficient with a level of 13. Im taking supplements for that. However, my neurologist did a series of other blood tests today (c-reactive protein, ESR, ana screen, creatinine). He has also ordered an mri to be done. He thinks there is a big possibility it's MS. However, he's going to rule out lupus or other autoimmune diseases as well. Just want to know if Im on the right track? Are there any tests that he should have done that he didn't? Im feeling extremely anxious and the pain is only increasing with stress. What tests did your doctors do in order to rule out/diagnose MS besides the MRI?

[jimmylegs]

hi sandy! sounds like you have things moving, which is good. did they tell you your exact b12 result? that would be good to know.

what units is your d3 result in? ng/mL or nmol/L?

when you supplement d3 have they advised you to balance it with proper minerals such as calcium magnesium and zinc? or are you taking d3 by itself?

serum zinc and serum magnesium are not standard tests done to dx ms but they're very important nonetheless, since they're often both low in ms patients. if you can, press for serum zinc and serum magnesium tests, and get your own copy of the results.

my tests included b12, mri (brain and spine), lumbar puncture, visual evoked potential, and some other nasty thing for nerve conductivity. on my own i pressed for all additional nutrient testing. for me, the results have provided extremely useful info.

hth!

[lyndacarol]

... However, my neurologist did a series of other blood tests today (c-reactive protein, ESR, ana screen, creatinine). He has also ordered an mri to be done. He thinks there is a big possibility it's MS. However, he's going to rule out lupus or other autoimmune diseases as well. Just want to know if Im on the right track? Are there any tests that he should have done that he didn't? Im feeling extremely anxious and the pain is only increasing with stress. What tests did your doctors do in order to rule out/diagnose MS besides the MRI?

Your neurologist is right to rule out other autoimmune diseases; there is no one definitive test for MS; it is often the one that is left after the others are ruled out. I understand that you are feeling anxiety and stress, but stress especially will complicate your symptoms – try to relax in a warm bath of Epsom salts (The magnesium in Epsom salts can be absorbed through the skin and helps muscles.).

Like jimmylegs, I had the visual evoked potential test, and EMG for nerve conductivity – these were normal. My first three MRIs were also normal. Eventually, I was diagnosed on the basis of my symptoms and the fourth MRI which showed lesions.

[jimmylegs]

stress especially will complicate your symptoms – try to relax in a warm bath of Epsom salts (The magnesium in Epsom salts can be absorbed through the skin and helps muscles.).

seconding LC. stress contributes to depletion of magnesium, which makes you more stressed, etc, so it's a wicked catch 22. as for epsom salts, they are a useful option but don't overdo - more is not better

hope you get some relief soon!

[sandy05]

Hey guys,

So my B12 is 341 pg/ml range 211-911. d3 was 13.5 ng/mL range 30-100. tsh was higher than normal at 4.387 mcUnits/mL range 0.35-5 so they did an anti thyroid ab test to see why the number was so high. They want me to take d3 supplements once a week for four months and then get retested in four months to see if the level increases. So far they only want me on that supplement, the doc didn't mention calcium magnesium or zinc, but Im taking an all around vitamin everyday.

Also, they are going to do an mri on monday for my brain and neck. They said if it comes out clean there is no way it's MS? I found that confusing because reading other people's posts on here so many have said the first couple of mri's they had came out clean but they were still diagnosed later on. The neurologist told me there is no way it is MS without lesions showing up on the mri, so Im a tad bit confused.

If everything on the mri is negative, he is going to do an EMG and other tests to rule out nerve damage and such. I am trying very hard not to stress out, because Im finding the more exhausted I get the more frequently my leg starts to shake. I am going to go and buy some epsom salts and try a warm bath, only problem is I've been getting easily irritated by hot water. Thank you both for your insight and suggestions. You have made this difficult process a little easier on me.

[lyndacarol]

...They said if it comes out clean there is no way it's MS? I found that confusing because reading other people's posts on here so many have said the first couple of mri's they had came out clean but they were still diagnosed later on. The neurologist told me there is no way it is MS without lesions showing up on the mri, so Im a tad bit confused.

If everything on the mri is negative, he is going to do an EMG and other tests to rule out nerve damage and such. I am trying very hard not to stress out, because Im finding the more exhausted I get the more frequently my leg starts to shake. I am going to go and buy some epsom salts and try a warm bath, only problem is I've been getting easily irritated by hot water.

I am glad that your physician has ordered so many tests – it is a good beginning. But your neurologist is wrong about MS being impossible if your MRI shows no lesions. I know of at least two other people on this website (LR1234 and gwa), who like me had several initial "clean" MRIs. In fact, as I recall gwa has NEVER had lesions show up. I'm sure there are more than three of us, I just can't remember – perhaps they will identify themselves.

I understand that it is hard not to stress out. The Epsom salt bath should help, but avoid HOT water – keep it warm or tepid.

All the best to you.

[jimmylegs]

ok for b12, that 341 pg/ml x 0.738 = 252 pmol/L. that's pretty low. outright deficiency is defined by hematological criteria, ie visible structural changes to blood cells. before it gets that bad, there are a number of cognitive issues that come into play. i like to keep my b12 levels at least 500 pmol/L, and in your units that's 500/.738= 677 pg/ml. so you could basically stand to double your levels.

here's an abstract which demonstrates some of the problems with the current 'normal' ranges for serum cobalamin - abnormalities in other metabolites, which indicate cobalamin deficiency, are present, even though serum cobalamin levels are not considered low. the range is off. also the range provided by your lab could be just numbers from that lab's patients, with zero healthy controls represented in the data (i don't know that but i've seen it be the case over and over in other labs).

anyway, that abstract:
Diagnosis of cobalamin deficiency: II. Relative sensitivities of serum cobalamin, methylmalonic acid, and total homocysteine concentrations
http://onlinelibrary.wiley.com/doi/10.1 ... 5/abstract
"The serum cobalamin level has been generally considered to be essentially 100% sensitive in the detection of the clinical disorders caused by cobalamin deficiency. We tested this hypothesis in two groups of patients. In patients with pernicious anemia or previous gastrectomy who received less than monthly maintenance therapy, early hematologic relapse was associated with elevation of the serum methylmalonic acid, total homocysteine, or both metabolites in 95% of instances, although the serum cobalamin was low in only 69%. In the absence of hematologic relapse, the methylmalonic acid was abnormal more than twice as frequently as the serum cobalamin. We also reviewed the records of 419 consecutive patients with recognized clinically significant cobalamin deficiency. Twelve patients were identified in whom deficiency was clearly present although the serum cobalamin was greater than 200 pg/ml. Anemia was usually absent or mild, but 5 had prominent neurological involvement that subsequently responded to cobalamin. Both the serum methylmalonic acid and total homocysteine were increased in each patient. The serum cobalamin was normal in 9 (5.2%) of 173 patients with recognized cobalamin deficiency seen in the last 5 years. Antibiotic treatment lowered the serum methylmalonic acid but not the total homocysteine level in two cobalamin-deficient patients, suggesting that propionic acid generated by the anaerobic gut flora may be a precursor of methylmalonic acid in deficient patients. We conclude that the serum cobalamin is 'normal' [JL: my emphasis] in a significant minority of patients with cobalamin deficiency and that the measurement of serum metabolite concentrations facilitates the identification of such patients."

[jimmylegs]

also, can you give me a link to the all round vitamin product you are taking? typically the forms and levels in multis aren't that great.

if the docs have not told you to balance your intake of d3 with appropriate minerals, then they are not clear on what they're doing. they may not clearly understand the interconnections and interrelationships between d3, magnesium, zinc, etc. if you start to feel certain symptoms worsening on the high dose d3, i would recommend that you insist on a magnesium and a zinc test. for one thing, your body won't absorb or utilize d3 nearly as efficiently, if you have low zinc at the same time.