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Hi all,

Basically, my question is whether it's common for flares to "unfold" with the same progression of symptoms.

I first went to see my GP following a series of nocturnal injuries. At the time I thought I was having seizures in my sleep because I'd go to bed fine and wake up feeling like I'd fallen down a flight of stairs. As I went through test after test my symptoms progressed (motor issues of every kind and serious cognitive issues) and unfolded in a particular order.

Now it's six months later and I feel like I'm on step 2 of that same process and I'm utterly terrified.

The first time around I didn't get a definite diagnosis. An MRI was done including brain stem but it looked clean. Adequate B12, D, and everything else. No heavy metals. They tested for Huntingtons, checked for Wilson's, did a peripheral smear to look for acanthocytes... they ruled out pretty much everything. The one test that did come back positive was an MTHFR genetic test.

After I got that test result I started taking methylated b12 and methylfolate and started getting better and thought that was it. My symptoms could be explained by that alone. However, now they're coming back and I've been perfect about my vitamin regimen.

On doing research it looks like there's also a connection between my specific MTHFR defect and MS. I'm starting to fear the worst. I'm really starting to worry that this is MS and this is my second flare, but I'm an outsider looking at something unfamiliar and trying to judge whether it is or isn't something else I'm not familiar with.

To those of you with experience, is that or can it be a characteristic of flares? Does this look like MS to you?

I'm scared to go back to my GP because after my last round of medical bills I couldn't even pay my taxes this year.

Edit:

Relevant bloodwork since I've seen some of you asking about it in other threads:

ScaredStray wrote:After I got that test result I started taking methylated b12 and methylfolate and started getting better and thought that was it. My symptoms could be explained by that alone. However, now they're coming back and I've been perfect about my vitamin regimen.

What brands have you been using and how much have you been taking? Are they sublingual tablets?

ScaredStray wrote:Relevant bloodwork since I've seen some of you asking about it in other threads:

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Component		   		Your Value     Standard Range
Lead, whole blood		<2.0 ug/dL		0.0 - 4.9 ug/dL
Mercury, Blood			<3 ug/L   		0 - 10 ug/L
Arsenic, Blood			<10.0 ug/L		0.0 - 13.0 ug/L

Those are peculiar values. The "<" seems to suggest a limit of detection value. However, your lead and arsenic put you at the 39^th and 76^th percentiles respectively which seems kind of high given the range for the two metals (assuming that you could be 1.9 µg/dL and 9.9 µg/L for the two).

The heavy metals are all normal. Remember, I don't have the listed value I have lower than it. I think what it means is they'd have to do something more in-depth to lower the detection threshold below that point. They presumably didn't bother doing it since the preliminary test indicated it was normal, and not even high normal.

Both vitamins are from Jarrow. The methyl folate is a gel cap. The methyl b12 is a sublingual tablet.

When I started taking them I did realize I was having fewer symptoms then eventually no symptoms. I'd stopped journaling my symptoms at that point like a dummy because I was convinced I had my answer and was going to be fine and the whole process had been super depressing.

Now I'm thinking the improvement was just the regression of my first flare, which is a terrifying thought, but here we are.

ScaredStray wrote:Both vitamins are from Jarrow. The methyl folate is a gel cap. The methyl b12 is a sublingual tablet.

I've tried the Jarrow methylcobalamin sublingual tablets. Unfortunately, they did nothing for me and after 5 days I was starting to feel as B12 deficient as ever, e.g., just dragging myself around. I switched back to the brand I normally use, Superior Source, and it was like the fog lifted in about 20 minutes.

Interesting. I'll give them a try. If it is a simple matter of the vitamins do you have any idea why they would have worked for months and months and then stopped?

More to the point, no one has answered my actual question of whether flares can tend to progress in similar fashion as far as the order and progression of symptoms.

ScaredStray wrote:Basically, my question is whether it's common for flares to "unfold" with the same progression of symptoms.
...
Relevant bloodwork since I've seen some of you asking about it in other threads:

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Component				Your Value		Standard Range
Vit D, 25 Hydroxy	  36.8 ng/mL		30.0 - 80.0 ng/mL

I cannot answer your question on the nature of flares; it would seem to me to fall into the unique experience each of us has with this disease.

My comment here concerns vitamin D: your 25-hydroxy D level was 36.8 ng/mL. Although this number is within the standard range used by your lab (30.0-80.0 ng/mL), your number is below the "at least 40 ng/mL" recommendation by GrassrootsHealth (http://www.GrassrootsHealth.net).

My suggestion (I have no medical background) is that you raise your Vit D to a more optimal level, rather than the low end of any range. I am surprised that your lab's range tops out at 80.0, when the Institute of Medicine (IOM) range goes to 100. There are neurologists who recommend patients with neurological symptoms should have levels between 80-100 ng/mL.

On page 48 of the book, Vitamin D Prescription by Eric Madrid, MD:

The upper range of normal is 100 ng/mL (250 nmol/L), although it appears that levels as high as 200 ng/mL pose no threat of toxicity.

To raise your level just to 60 ng/L you may find this GrassrootsHealth chart for changing serum level useful: http://grassrootshealth.net/media/image ... single.pdf

The issue is not how much you take in each day, the issue is rather how your body responds to it – how much your body absorbs and the blood level. Regular monitoring with testing is the only way to know if you are maintaining the optimal level.

I still don't think it's the vitamin D issue. When I had the blood drawn I'd basically been bed ridden for over a month so I'd had no sunlight exposure and wasn't eating as healthy as I normally do. Ordinarily I have good dietary sources and get outside. The delay was because blood work wasn't done initially. Neuro consultation, MRI, and EEG all happened first and the tests were interpreted before we moved on and kept looking. Getting those appointments in my smallish-but-growing town took a while. Even so, a month with reduced intake and severely reduced activation from sunlight and I was still low-normal.

Both times my initial symptom was a serious debilitating injury along my spine acquired in my sleep. Flare 1 (if it was a flare) was along my right SI joint in my hip (where the sacrum meets the pelvis), the deep external rotators on the back of my right hip and the origin of at least some of my right hamstring and up into my lower back. This time around it was my mid-back and ribs. A week ago I had about six different places in my ribcage where it feels like I either broke a rip, severely strained a muscle, or severely sprained a joint through the uncoordinated muscle contractions in my sleep which apparently aren't epileptic seizures (neuro who read the sleep deprived EEG seemed confident).

Involuntary movements came next. Tremors off and on with the occasional-but-rare chorea attack. I know chorea is rare for an MS symptom but it isn't unheard of and we've ruled out the other things that should cause it (huntington's, wilson's, neuroacanthocytosis all ruled out by test, no Sydenham's chorea since no rheumatic fever, no Chorea gravidarum since I'm not pregnant or even female, metabolic panel should rule out metabolic causes, no indication of any hormone imbalance for the extremely rare endocrine causes not covered).

If this keeps on the same similar path as before next is going to come ataxia, parathesia, migraines, visual disturbances, bouts of severe confusion, and eventually subtle hallucinations. Depression and exhaustion throughout but I'm not sure how much of that is truly a symptom and how much is a normal response to the other symptoms.

I'm not asking if anyone else's flares unfold in this exact way. I know the particulars vary person to person. I'm just wondering if progression of symptoms is even a thing or if flare symptoms generally come all at once. Then, if they DO progress whether they tend to follow similar paths.

..and I'm pretty sure I just had my first visual hallucination, way ahead of schedule. I'm really scared. If anyone can weigh in one whether symptoms normally hit all at once or develop over time I'd really appreciate it.

ScaredStray wrote:Interesting. I'll give them a try.

Sally Pacholok, coauthor of the book "Could it Be B12?," recommends taking Advanced B12 by Superior Source.



(@ 15 min) It has 1,000 micrograms (µg) of both active forms of B12, methylcobalamin and adenosylcobalamin. It's a small sublingual tablet that dissolves in about 1-2 minutes. I've taken them. You can get them from Lucky Vitamin for $15 for 60 tablets. http://www.luckyvitamin.com/p-429934-su ... 0-tablet-s

ScaredStray wrote: If it is a simple matter of the vitamins do you have any idea why they would have worked for months and months and then stopped?

I do not know why it would appear to work and then stop. You might want to talk with your doctor about using B12 shots. The hydroxocobalamin form is good for shots and is readily available unlike methylcobalamin shots which are only available from compounding pharmacies.

NHE, if I'm being honest it doesn't feel like I'm being helped, it feels like I'm being sold. My B12 was on the HIGH side of normal to begin with. I'm taking methyl B12 anyway and it appeared to work and then seems to have stopped working. I am 99.99999% sure it is not a vitamin issue. Please stop trying to sell me vitamins. I have a very simple question that is being outright ignored.

I feel like anyone who has remit/relapse MS should be able to talk about whether, in their experience, the symptoms show up all at once or if they develop sequentially. That's what I want to know.

If you don't have MS or firsthand experience with it and are only here to push vitamins, I'm sorry, but that is a terrible thing to do and you should be ashamed of yourself.

There is no blood test for Multiple Sclerosis and no blood test that can indicate MS at this time. All blood work is used to rule in/out other conditions.

I am SUPER aware of that fact Snoopy. Thanks. Again, I have a specific question.

I included the blood work so I could show you guys that vitamin D, B12, and metabolic causes of Chorea HAD been ruled out as have the major identifiable genetic causes (Huntingtons, Wilson's, Neuroacanthcytosis).

My hope was people would see the results and not try to sell me vitamins but instead someone might actually read and maybe even answer my very simple question.

I'm sorry if I'm being rude, but I'm absolutely terrified and no one seems to care about me or my question. Everyone is just using my thread as an excuse to push their own agenda.

No offense, but I'm not looking for vitamin recommendations or to be told things I already know and did not ask.

Basically, my question is whether it's common for flares to "unfold" with the same progression of symptoms.

Each person experiences exacerbations (relapse, attack, flare-up) differently. The definition of an exacerbation: old and/or new symptoms lasting continuously for more than 48 hours and separated from the last by 30 days. These are guidelines for an exacerbation due to Multiple Sclerosis. It is very common to have residual symptoms and symptoms that come and go.

As I went through test after test my symptoms progressed (motor issues of every kind and serious cognitive issues) and unfolded in a particular order

Exacerbations do not "unfold" in any order, it simply does what it wants and we are along for the (very unwanted) ride.

I definitely fit the time guidelines. First bout lasted about 2 months start to finish with the symptoms being transient and just getting worse and more varied each time they came back in that period. I don't think I had a single symptom free day once they started.

Then I felt like I'd gone 99% of the way back to my old self for about four months. Now, here I am.

It's been about two and a half weeks since my first nocturnal injury on this bout and I'm getting new neuro symptoms this time around. Still, the presumably spasticity-induced nocturnal injury heralded the start of whatever this is both times.

ScaredStray wrote:It's been about two and a half weeks since my first nocturnal injury on this bout and I'm getting new neuro symptoms this time around. Still, the presumably spasticity-induced nocturnal injury heralded the start of whatever this is both times.

The nocturnal injuries you refer to is not something I have ever heard of or read about in relation to MS. Have you ever had a sleep study? A sleep study might help in determining what happens in your sleep.