New to forum, think I may be having my first flare up?

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New to forum, think I may be having my first flare up?

Postby Kelly21am » Thu Nov 15, 2012 10:31 am

Hi, I am new to the forum and think I may be having my first flare up since first being diagnosed.

First, I guess I should let you know about me and my history. I am a 25 year old mother of 2 boys.. after giving birth to my second son is when all of "this" came about. Almost a month exactly after having him I started getting severe pain in my eyes when I looked anywhere but forward, two days later I was completely blind in both of my eyes. Unfortunately my eyesight was gone for an entire 2 months because I was with a VERY incompetent doctor who treated me with the wrong IV medicine. Long story short, after seeing specialist at several different hospitals, a neurologist diagnosed me with Optic Neuritis and immediately started me on a 5 day IV of solu-medrol. A week later I could see moving objects, it was one of the best days of my life, just to get that small amount of eyesight back. She did another 5 days of the solu-medrol and my eyesight was almost back to 100%. Throughout all of the "investigating" to find the cause of the loss of eyesight they did an MRI and found the lesions and also diagnosed me with MS. The doctor hasn't put me on any medication since I haven't had any symptoms / flare ups.

That was 15 months ago, and I believe I may be having my first flare up. My husband and I have been fighting A LOT lately, someone burnt down our detached garage, the transmission in my suv went out, and my oldest son had to go in for surgery a couple weeks ago.. so needless to say I have been under an ENORMOUS amount of stress.

First question, does stress trigger flare ups?

My flare up symptoms..
Since I was diagnosed I have always has an extremely low tolerance to heat, which my doctor said was normal, but lately it's been even lower.
My hair is falling out by the handful, like I've never seen before.
Since I was about 16, my left shoulder has tingled / gone numb / ached, off and on, but never lasting more than a week. I always thought it was a pinched nerve, but it has been acting up since all of my other symptoms showed up.
I've been more forgetful than usual.
I suffer from chronic migraines, but I am on topomax which has decreased my migraines from 3-4 a week to 1 every 2 weeks, however I have been getting them at least twice a week lately, even with the topomax.
The last symptom, is the most embarrassing, but I don't even care anymore, I have found it almost impossible to "hold it in" when I need to go to the bathroom. I can hold pee in, but the other, If I don't make it to a bathroom immediately then I'm in trouble. It's the most embarrassing thats ever happened to me. So I've found myself staying at home pretty much all the time.

I know this is long, and I'm sorry, its just, it's nearly impossible to get in to see my neurologist, so if these all sound like flare up symptoms then I will make sure I get in to see her, if it just sounds like "too much stress" symptoms then I don't want to bother. Any input is MUCH appreciated! Thank you!
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Re: New to forum, think I may be having my first flare up?

Postby chico » Thu Nov 15, 2012 1:30 pm

Hi Kelly,

I advise you to spend some time checking out the OMS program
http://www.overcomingmultiplesclerosis.org/

br
K
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Re: New to forum, think I may be having my first flare up?

Postby dlynn » Thu Nov 15, 2012 3:27 pm

Hi Kelly21am,
I'm sorry you're going through all this MS stuff. After reading so much about MS and especially others symptoms,experiences, etc.,there are so many different outcomes to stress. I've heard that it brings on symptoms, but for me (thankfully)
stress never caused a flare up. My issues didn't start until 15yrs. after my dx. Now when I schedule too much in one day,
I have issues with balance, fatigue, pain...stress still doesn't cause flare ups. You can learn so much here, check out all the forums and ask alot of questions. God bless!!
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Re: New to forum, think I may be having my first flare up?

Postby CaliReader » Thu Nov 15, 2012 4:17 pm

Hi,

I'm new also. However if it were me, the bowel symptoms would have me running to the neurologist and or a different primary care doctor looking for whatever help is out there. There have to be some best practices for coping.

Everything you've described matches symptoms of MS that I have at least read about.

Best of luck with it.
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Re: New to forum, think I may be having my first flare up?

Postby lyndacarol » Sat Nov 17, 2012 3:49 pm

Welcome to ThisIsMS, Kelly. I offer you my standard action plan suggestion, since your last line states that ANY input will be appreciated:

First, take a deep breath. You certainly have been dealing with LOTS of things! Two boys alone would be a handful! You have found many supportive friends at this site. We are here to help in any way we can. We come from diverse experiences and hold diverse ideas. We do not necessarily agree with each other 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.

MY personal suspicion is that too much insulin starts the MS cascade. A woman's body produces more insulin during pregnancy in order to put weight on the baby she carries. It is my opinion that her body does not always stop producing insulin immediately when the child is born. I think this may have been your case. The hormone insulin is caustic and irritates the inside of blood vessels (especially the small ones of the eyes) – I think this causes the tingling (a "raw" or "sunburned" feeling) I have in my legs and feet.

Solu-Medrol is a glucocorticosteroid which elevates blood sugar and temporarily engages or occupies the insulin, reducing the amount that floats freely in the bloodstream. During this time the pancreas MAY reset to secrete a proper amount – adequate to handle glucose, but not in an excess amount. (I KNOW my pancreas secretes TOO MUCH; I suspect that yours does too – perhaps failing to reset after pregnancy.)

To your first question, stress causes the cortisol level (hormone produced in the adrenal glands) to increase; cortisol also elevates blood sugar and the body produces more insulin in response. So… in my opinion, yes, stress does trigger MS symptom flareups by increasing the insulin level.

I think this imbalance of the hormone insulin causes other hormone imbalances – possibly thyroid hormones in your case. Brittle or thinning hair ("hair is falling out by the handful, like I've never seen before") is one of the signs of a problem in the thyroid gland (underactive thyroid a.k.a. hypothyroidism). Other symptoms can include feeling tired (unrelenting fatigue), cold all the time, memory loss, brittle nails, leg swelling, constipation, loss of the outer third of eyebrows. A simple home test can also indicate underactive thyroid: if you take your basal body temperature (in the morning before getting out of bed) every morning for a week and it is consistently below 98°, you may have an underactive thyroid. 11/18/2012, I just came across the following information: "Many medications also slow down the thyroid and also cause iodine deficiency. Lithium and corticosteroids are thyroid-slowing and should be used sparingly if at all."

AND 11/16/2012, the thyroid and iodine deficiency was discussed on The Dr. Oz Show with Dr. Andrew Weil: http://www.doctoroz.com/episode/andrew- ... ideo=15632 "Puffy eyes" as pictured in video are another symptom of a thyroid problem.


To your last symptom, urinary (bladder) incontinence and fecal (bowel) incontinence are not uncommon MS symptoms. Please don't feel embarrassed – at this website, we try tactfully and sensitively to deal with ALL questions and problems concerning MS. I do not have a suggestion for these problems; I hope that others here will.

I do know that insulin thickens and stiffens the smooth muscles… the sphincter muscles of the bladder and bowels are smooth muscles. I suspect the insulin causes dysfunction of those muscles – resulting in incontinence.

I encourage you to request a "fasting blood insulin test" and a series of thyroid hormone tests (TSH, Free T4 , Free T3 , Total T3, Reverse T3, and antithyroid antibodies). If your doctor says your blood tests are fine, please realize that most thyroid tests aren't articulate enough always to catch the problems – watch your symptoms closely; they can be a better gauge. The optimal insulin test result should be 3 UU/ML or lower.

From this day forward, I encourage you to eat a healthy diet (a good idea for your whole family). 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 and trigger insulin production), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing 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. I think that excess insulin plays a great part in MS and 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).

All the best to you. Remember, we are here for you.
Last edited by lyndacarol on Sun Nov 18, 2012 12:11 pm, edited 3 times in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New to forum, think I may be having my first flare up?

Postby Cece » Sat Nov 17, 2012 10:32 pm

A flare-up is any worsening of an old symptom or onset of a new symptom that lasts longer than 24 hours. It's best to call right away because the sooner the better if steroids are needed. All the best.

Hair falling out could be a thyroid imbalance, if you tell your regular doctor, you'd just need a blood test run.
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Re: New to forum, think I may be having my first flare up?

Postby jimmylegs » Sun Nov 18, 2012 9:11 am

welcome to the forum kelly :)

i'm chiming in from the nutrition corner :D

re your history, for me moms of multiple children with ms always wave really big red flags re nutrition. for example zinc commonly suboptimal with links to a wide variety of diseases. it is depleted in childbirth and associated with optic neuritis if not outright blindness.

stress also depleted important nutrients known to be suboptimal in ms patients. this link will take you to some relevant scientific studies i posted earlier today on a different thread:
general-discussion-f1/topic21148.html#p200639

if i may ask, what sort of surgery did your eldest require?

to your question re stress and flare ups, i would say it's certainly possible in a sort of downward spiral sort of way. poor diet and stress can deplete nutrient levels to the point of anxiety, increased stress, more nutrient loss, etc. nutrient status has been shown to be lower in ms patients in relapse as compared to remission. one indirect example i can think of is uric acid, which averages 230 in ms patients in remission, 160 in patients in relapse, and 290 in healthy controls. uric acid is positively correlated with serum zinc status. from which we can reasonably infer that low zinc and relapse are associated.

re heat tolerance, i can't get full text access for these studies and the abstracts are uninformative, but here are a couple of study titles which at least show an association between nutrition status and heat tolerance
-The influence of nutritional ergogenic aids on exercise heat tolerance and hydration status
-Effects of altered vitamin and mineral nutritional status on temperature regulation and thermogenesis in the cold

consider iron and zinc status for the alopecia

Decreased Serum Ferritin is Associated With Alopecia inWomen
http://www.uphs.upenn.edu/dermatol/facu ... tinjid.pdf
"...We found that the mean ferritin level (ng/ml [95% confidence intervals]) in patients with androgenetic alopecia (37.3 [28.4, 46.1]) and alopecia areata (24.9 [17.2, 32.6]) were statistically significantly lower than in normals without hairloss (59.5 [40.8, 78.1])."

The Therapeutic Effect and the Changed Serum Zinc Level after Zinc Supplementation in Alopecia Areata Patients Who Had a Low Serum Zinc Level
http://synapse.koreamed.org/DOIx.php?id ... vmode=FULL
"Fifteen alopecia areata patients ... serum zinc levels increased significantly from 56.9 µg/ to 84.5 µg/dl. Positive therapeutic effects were observed for 9 out of 15 patients (66.7%) ...
Zinc supplementation needs to be given to the alopecia areata patients who have a low serum zinc level."

(personally i try to keep my ferritin levels up around 100 ng/ml, and my zinc levels up around 18 nmol/L or 118 µg/dl...
also, a friend of mine used to have to shave her head b/c her hair was so patchy.. i got her taking zinc and magnesium after which her anxiety level dropped like a rock, and her hair grew back in. these were just beneficial side effects of taking these nutrients for other reasons entirely)

as for aching joints, there are connections to vitamin d3 and magnesium. i can provide studies if you'd like scientific backing for that statement.

i personally used to be extremely forgetful. i asked for a zinc test and was markedly deficient. since correcting the zinc deficiency my memory is better than in years, decades even.

as for migraines, there is lots of info out there on dietary and nutritional strategies for migraine. i have only gotten 2 migraines and they are certainly NO FUN. have not had one in many years though. question: what are your migraines like, typically? do you feel it in a particular part of your head? do they affect one side more than the other?

on to the bowel incontinence:

The effect of severe zinc deficiency on serum levels of albumin, transferrin, and prealbumin in man
http://ajcn.nutrition.org/content/34/9/1655.short
"....All patients had a depressed serum zinc concentration .... Many patients had additional clinical manifestations of zinc deficiency (impaired immune function, diarrhea, and mental dysfunction...)"

so, if you feel inclined, you can request bloodwork for serum zinc, magnesium, vitamin d3, and ferritin. whether or not the results come back 'normal', if you bring the actual results here (numbers w units) here we could provide some feedback :)
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