My symptoms...what were yours when you were first diagnosed?

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

My symptoms...what were yours when you were first diagnosed?

Postby needananswer » Sun Dec 01, 2013 10:04 am

I would like to share what's been going on with me recently and see if any of you have experienced any of the same symptoms.

I wanted to see what your first symptoms were and how long did they last? Do they typically go away or do you always have them?

A about 4 yrs ago when I was 22, I woke up in the middle of the night to my left arm and leg being numb. I immediately panicked, thinking I was having a stroke or something. I waited a few minutes until the feeling started to return and walked around until the tingling subsided. Went back to bed and the whole next day my right side felt weak. I just didn't feel right. Over the next few nights, I kept waking up periodically throughout the night with similar symptoms and it would be any extremity. (Drs. would later say it was from sleeping on something, BUT I had never had that before, unless I like woke up on my arm lol... and it seemed too frequent to me). I also started getting muscle spasms, or charlie horses in my calves while sleeping and my legs would be tight for days. My calves always felt tight, especially after minimal exertion, and they also would feel heavy. I always felt tired and would get a "foggy" feeling. I also have hypothyroidism so they just attributed the fatigue and foggyness to that. When all of my results came back normal (MRI, bloodwork, EMG) I was told to "take a nap," "relax because it's probably anxiety," or my favorite, "you're too young to have these problems, you're the healthiest person I've seen all day. Go home." lol yeah, that really happened. Eventually, my symptoms got MUCH better and for about 3 yrs I was almost completely symptom free. I would get tired here and there and my legs would get tight, but I got used to it and it wasn't as bad as before.

Fastforward to now: About a month-2 months ago I noticed vision changes. My right eye isn't as vivid as my left and I think it's blurry. I keep thinking I need new contacts but I just had my vision checked to be sure. It's always less vivid since I initially noticed it but at times it seems like it's blurrier than others. My right eye started to look a little droopy and was tingling and occasionally twitching. Saw my primary about this and she said I may have myasthenia gravis and to see a neuro. Currently waiting for my appt.

However, in the meantime, the tightness in my legs has returned, even when I do something as simple as walk my dog around the block. I've started to get this burning feeling on the outside of my calf- lasts briefly and then goes away. Happens a few times a day. The right side of my face appears more swollen than left. Sometimes, an arm, usually my right, will feel weaker than the other one, but I can still move it and the strength is the same... it just feels like it's weaker when I push, squeeze. I've started to get dizzy on and off throughout the day but it lasts very briefly, only a few seconds. I've developed an intolerance to heat and I usually LOVE the heat. When I get warm to quickly, I've been getting REALLY splotchy... to the point where it looks like I have hives, but it's flat. It goes away within like 20 minutes.

Do any of you get these symptoms? If so, what exacerbates them, what helps, and how long do they last? Do you go through a long period of time without any and then they come back? And when they return, do they stay for a month or are they on and off for a month?

Thanks in advance!
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Re: My symptoms...what were yours when you were first diagno

Postby lyndacarol » Sun Dec 01, 2013 12:23 pm

needananswer wrote:I would like to share what's been going on with me recently and see if any of you have experienced any of the same symptoms.

I wanted to see what your first symptoms were and how long did they last? Do they typically go away or do you always have them?

A about 4 yrs ago when I was 22, I woke up in the middle of the night to my left arm and leg being numb. I immediately panicked, thinking I was having a stroke or something. I waited a few minutes until the feeling started to return and walked around until the tingling subsided. Went back to bed and the whole next day my right side felt weak. I just didn't feel right. Over the next few nights, I kept waking up periodically throughout the night with similar symptoms and it would be any extremity. (Drs. would later say it was from sleeping on something, BUT I had never had that before, unless I like woke up on my arm lol... and it seemed too frequent to me). I also started getting muscle spasms, or charlie horses in my calves while sleeping and my legs would be tight for days. My calves always felt tight, especially after minimal exertion, and they also would feel heavy. I always felt tired and would get a "foggy" feeling. I also have hypothyroidism so they just attributed the fatigue and foggyness to that. When all of my results came back normal (MRI, bloodwork, EMG) I was told to "take a nap," "relax because it's probably anxiety," or my favorite, "you're too young to have these problems, you're the healthiest person I've seen all day. Go home." lol yeah, that really happened. Eventually, my symptoms got MUCH better and for about 3 yrs I was almost completely symptom free. I would get tired here and there and my legs would get tight, but I got used to it and it wasn't as bad as before.

Fastforward to now: About a month-2 months ago I noticed vision changes. My right eye isn't as vivid as my left and I think it's blurry. I keep thinking I need new contacts but I just had my vision checked to be sure. It's always less vivid since I initially noticed it but at times it seems like it's blurrier than others. My right eye started to look a little droopy and was tingling and occasionally twitching. Saw my primary about this and she said I may have myasthenia gravis and to see a neuro. Currently waiting for my appt.

However, in the meantime, the tightness in my legs has returned, even when I do something as simple as walk my dog around the block. I've started to get this burning feeling on the outside of my calf- lasts briefly and then goes away. Happens a few times a day. The right side of my face appears more swollen than left. Sometimes, an arm, usually my right, will feel weaker than the other one, but I can still move it and the strength is the same... it just feels like it's weaker when I push, squeeze. I've started to get dizzy on and off throughout the day but it lasts very briefly, only a few seconds. I've developed an intolerance to heat and I usually LOVE the heat. When I get warm to quickly, I've been getting REALLY splotchy... to the point where it looks like I have hives, but it's flat. It goes away within like 20 minutes.

Do any of you get these symptoms? If so, what exacerbates them, what helps, and how long do they last? Do you go through a long period of time without any and then they come back? And when they return, do they stay for a month or are they on and off for a month?

Thanks in advance!

Welcome to ThisIsMS, needananswer.

Numbness and tingling in the hand/arm and foot/leg is called peripheral neuropathy and is very common in MS and in several other conditions. There is a wide range of symptoms in MS; each person with the disease has his own unique collection of symptoms. The triggers for exacerbations, the length of exacerbations, and the course of the disease – whether relapsing/remitting or unrelentingly progressive – are unique to the individual and cannot be predicted. The challenge is to rule out the other more likely possibilities.

In preparation for your neuro appointment, consider the following suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest


Especially important is this section on blood tests:

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease
HIV/AIDS
Hepatitis C and B

By the way, hypothyroidism is one of 100+ autoimmune diseases. It is not uncommon for a person diagnosed with one autoimmune disease to be diagnosed with a second or third one.
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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