A crazy few months brings me here...

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

A crazy few months brings me here...

Postby Karme » Tue Aug 07, 2012 8:04 pm

Hello. Sorry in advance for the length, but here is my loooong introduction :

Yesterday has added even more questions, fear, and uncertainty to the lives of my husband and I! My husband was given the diagnosis of MS yesterday, and I am here to look for direction on what to do next. To give some background, my husband has always been very healthy and very active. He is at the gym every morning for an hour before work, and spends his weekends hiking, and as much time as he can, backpacking.

In February he began noticing his right arm and leg would "seize" up for 10-15 seconds while he was on the weight bench at the gym. By March, it had increased to a couple of times a day. He made an appointment with our family doctor. He expressed concern to our doctor about the cost of testing, but the doctor suggested he start with a good blood work-up. We found out in mid-April that we had met our insurance deductible for the year...just in time... hubby had a sudden spike in "episodes" (4 to 5 per hour for 4 or 5 hours) that also pulled his face and disabled his speech (15-20 seconds in length) and I rushed him to the ER with what we thought were siezures or a brain tumor!! He was in the hospital for 5 days and they did many (many!!) tests. The neurologist on staff at the hospital was convinced that hubby was having mini-strokes and wanted him to immediately start aspirin and blood pressure meds (hubby was experienceing very high bblood pressure). One area of "concern" was found in hubby's MRI of the brain. The whole mini-strokes didn't add up to us, so when we saw our family doctor two days later (and hubby's blood pressure was normal), he felt comfortable telling my husband to hold off starting blood pressure meds until we got the results of the lumbar puncture that had been done.

Well, when we saw neurologist for check-up two weeks later he was more upset that hubby didn't start the blood pressure meds and he was snarky and said that everything pointed to mini-strokes when I questioned the lumbar tests. He said the results were normal. When we left, our family doctor called to say that he had seen the lumbar results and they showed some concerning levels of proteins. Neurolgist calls my hubby two hours later to say that the lumbar results have him thinking MS instead of mini-strokes and wants to know when hubby can come in for more tests. Ha ha ha yeah, right. He didn't even look at the lumbar results before (or during) our appointment!!!

Family doctor recommends we find a neurologist at John Hopkins (thankfully we are close enough to benefit from this facility). We saw someone in June and he said that according to everything he saw in hubby's records, it had him leaning toward MS, or at least CIS, and he scheduled a second MRI for hubby, to include the spine. MRIs were performed almost exactly 3 months after the ones in the hospital.

Yesterday we were told that a second lesion was found in the new MRI of the brain, but still no lesions on the spine. The MRI lesions, the protien in the lumbar tests, and some other markers (including low Vit D) in the plethora of blood work they performed gave the doctor the confidence to bump hubby to a MS diagnosis. We were then told to research drugs and get back to him on what we would like to try. Hubby has had no other symptoms since the initial right side "episodes" went away a week after his hospitalization. he had no symptoms with the new lesion that devoloped in the past three months.

Hubby and I are not really "medicine" or "doctor" people, so this has really given us some concern. We do not know where to start. i have asked our family doctor to help us, but have not heard back from him yet. The neurologist also suggested that hubby start 4000 iu of Vit D (and he also suggested we get the levels of all 4 of our children checked). My migraine this week is stress related I am sure!!

For those that have read my long story, thank you. For those with any encouraging advice, thank you very much!! My hubby's passion is backpacking and he wants to section hike the AT (he is 10% done) and I want to keep him healthy and happy as long as we can!
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Re: A crazy few months brings me here...

Postby Cammie » Tue Aug 07, 2012 10:52 pm

I too had what I thought were seizures, but on the left side of my body. And I was originally diagnosed with mini-strokes. The first MRI revealed nothing, but a couple of years later they decided to do another MRI because the muscle spasms (what I originally thought was seizures) were getting more frequent and very, very painful. This time the brain lesions showed loud and clear! Then I had a lumbar puncture which the neuro said: "points to Multiple Sclerosis all the way." Then she put me on Baclofen to relieve the muscle spasms, which worked well when the dose got up to 45mg. Next she added Gabapentin for other MS pain I was having, with Oxycodone as needed for "breakthrough" pain. Finally I was started on Copaxone, a shot every day. I have been on Copaxone for five months, and already it is helping me. They say it takes 6 to 9 months for it to get into your system and help you, but for some of us it kicks in earlier. I started noticing results in less than 3 months. It's not a cure-all, but I do feel so much better!

Everybody experiences MS differently, and the same medications that worked for me may not work for you. Getting on Baclofen for spasms is a good starting point. Copaxone is the long term MS therapy with the least amount of side effects, so it is the best one to try first. I hope your hubby feels better soon!
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Re: A crazy few months brings me here...

Postby jimmylegs » Wed Aug 08, 2012 5:32 am

welcome to the forum, can't respond in detail at this time, glad to hear the doc suggested vit d3, the rest of the nutrition picture for ms can be found in my sig links below. most of the info is transferable to other diseases not just ms. until i get back, go to scholar.google.ca and search on athlete nutrient depletion and similar terms. search for the same in regular google too. bbl
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Re: A crazy few months brings me here...

Postby Karme » Wed Aug 08, 2012 4:27 pm

I just wanted to restate that hubby has had no other symptoms since the initial "episodes". He has been episode-free for three months. Would it be crazy to hold off on medication until he is dealing with more symptoms? The doctor likened it to blood-pressure meds that would help PREVENT a heart attack, but the thought of medicine every day is not a very good idea to hubby. But if it is what is recommended we will seriously consider it. The idea of side effects is very unpleasent also. Thanks so much!
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Re: A crazy few months brings me here...

Postby lyndacarol » Wed Aug 08, 2012 5:05 pm

Karme wrote:I just wanted to restate that hubby has had no other symptoms since the initial "episodes". He has been episode-free for three months. Would it be crazy to hold off on medication until he is dealing with more symptoms? The doctor likened it to blood-pressure meds that would help PREVENT a heart attack, but the thought of medicine every day is not a very good idea to hubby. But if it is what is recommended we will seriously consider it. The idea of side effects is very unpleasent also. Thanks so much!

I am not a physician; I was diagnosed with MS in 1992. I am not a fan of the approved MS drugs, although I used Betaseron for almost 3 years, followed by Avonex for about seven years, and then Copaxone – I did not feel that any of these were effective. I have not used any of these for a number of years; the cause of MS is unknown and I do not feel that scientists can have an effective drug until the cause IS known.

I offer my standard action plan recommendation:

First, take a deep breath. You have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

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.

From this day forward, I encourage you and your husband to eat a healthy diet (a good idea whether or not one has 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. I suspect that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

We are glad that you found us; we look forward to your participation. Welcome, Karme.
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Re: A crazy few months brings me here...

Postby jimmylegs » Wed Aug 08, 2012 5:49 pm

i'm biased when it comes to drugs, i don't take any myself. i think people should always get rid of anything they possibly can using nutrition, and only then worry about meds.

if there's a plausible reason why something other than ms is in the picture, docs *should*, but don't, go to that and make sure they rule it out first.

when you mention very healthy and active, as you've seen i immediately think of athletic nutrient depletion. questions jump into my mind about his typical diet and general nutrition regimen. there was someone else on here recently who seems to me to have done themselves in with high exertion levels and low nutritional inputs, here's the link if you want to get at that conversation: post195665.html#p195665

now for that seizing you mention. suspect #1 is magnesium. low in ms, low levels result in spasticity. i have experience with a mag deficiency seize, but fun fun fun mine was in my throat, while swallowing and airway was blocked. if you go to my regimen 'ms nutrition' you can read up on the details for proper testing, diet and supplement options to improve serum magnesium. there are links to blood pressure and magnesium too:

Serum Magnesium and Plasma Sodium Levels in Essential Vascular Hypertension (1958)
"...mean serum magnesium concentration in 26 uncomplicated hypertensive patients was found to be significantly lower than that in 43 normal individuals."

isn't it neat how this research is over 50 years old and yet no doctors have mentioned magnesium replacement to your athletic hubby??

Magnesium deficiency and hypertension: correlation between magnesium-deficient diets and microcirculatory changes in situ (1984)
http://www.sciencemag.org/content/223/4 ... 5.abstract
Rats maintained for 12 weeks on diets moderately or more severely deficient in magnesium showed significant elevations in arterial blood pressure compared to control animals. ... The greater the degree of dietary magnesium deficiency the greater the reductions in microvascular lumen sizes. These findings may provide a rationale for the etiology, as well as treatment, of some forms of hypertensive vascular disease.

Associations of serum and dietary magnesium with cardiovascular disease, hypertension, diabetes, insulin, and carotid arterial wall thickness: The aric study (1995)
The objective of this study was to examine the relationships of serum and dietary magnesium (Mg) with prevalent cardiovascular disease (CVD), hypertension, diabetes mellitus, fasting insulin, and average carotid intimal-medial wall thickness measured by B-mode ultrasound. ... A total of 15,248 participants took part, male and female, black and white, aged 45–64 years. ... Mean serum Mg levels were significantly lower in participants with prevalent CVD, hypertension, and diabetes than in those free of these diseases. ... Dietary Mg intake was inversely associated with fasting serum insulin, plasma high density lipoprotein-cholesterol, systolic and diastolic blood pressure. ... In conclusion, low serum and dietary Mg may be related to the etiologies of CVD, hypertension, diabetes, and atherosclerosis.

i have this one stupid study that showed magnesium supplementing didn't affect high blood pressure so it's not a useful therapy.

http://www.ncbi.nlm.nih.gov/pmc/article ... 8-0007.pdf
hogwash, i say ;) when you look at the study, the average serum magnesium level to start is 0.89 mmol/L. then they gave the participants this micro dose, and by the end of the study the levels barely inched up to 0.91 mmol/L, and that was just the average, half the study participants were still 0.90 or lower. so no wonder they didn't see improvement. you want to be 0.91 at an absolute minimum, even though the so-called 'normal' range is 0.70-1.10 mmol/L.

now to the idea of mini-strokes. it's magnesium again. here's a charming study where they looked at magnesium levels in stroke:

Early Clinical and Radiological Predictors of Fatal Brain Swelling in Ischemic Stroke

here's the table that has the serum data:
http://stroke.ahajournals.org/content/3 ... nsion.html

here's the table that shows the patients' pre-existing conditions, all of which have strong links to magnesium status too, not surprisingly...:
http://stroke.ahajournals.org/content/3 ... nsion.html

the study group are the patients that died, the controls also had a severe stroke but lived. both groups had serum magnesium levels averaging 0.85 mmol/L. once again 'normal', but it's in the bottom end of the curve, when you want to be up more in the 0.95 neck of the woods.

so the good news is that serum magnesium is an easy test, it should be relatively easy to boost dietary magnesium intakes, add things like epsom salts (magnesium sulfate) baths into the regimen, and consider good quality bioavailable magnesium supplements, eg magnesium glycinate or similar. consider that the blood pressure meds and when it works hopefully the neuro will be appeased.

low vit D3 also points to magnesium, and you should probably also have the serum zinc test done. it's a good idea to get the kids tested for sure. but don't test vit d3 alone. your ability to utilize d3 supplements is dependent on magnesium and zinc, and once you have enough d3 in your system you'll be better able to absorb calcium too. the docs have only recently flagged on the d3 aspect of ms, and i'm pretty sure most don't get the magnesium and zinc links yet. so, to make sure you actually get your money's worth out of that d3, make sure your magnesium and zinc status is optimized. also, note that you need to take some magnesium at the same time as d3, but you definitely need to take some at a separate time also.

oh and by the way stress depletes magnesium, which is also associated with migraine :) there's an ms caregiver here, cheerleader, who has used nutrition to reverse her issues with migraine, you might want to have a chat with her about that.

once again, that link to my nutrition regimen thread, with lots of info for targeting health, applicable to ms and lots of other conditions.

hope that helps :) there are lots of other folks on here who will have plenty to contribute. if you have any questions, fire away
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