MS Symptoms

[Redeemed]

I apologize for probably being one of many asking these same questions but whatever I have has slowly debilitated my life. I am trying to find out if anyone here has symptoms such as these.

For over 30 years, I have enjoyed the epitome of health. I never got the flu or hardly a cold. Then, about 10 years ago, I slowly started to lose my energy. Went to numerous doctors and nothing showed up save for 4 or 5 tests that showed light chain ratios that were off. Then, about a year ago, I started to notice I was dropping things. Not holding onto a glass but dropping small articles of clothing and such. The fatigue got worse and I slowly started to stop "living life" like I used to. I found myself trying to take naps so that I could stay up a bit longer on weekends with my wife. Now, I can't doze off for naps when I want to.

However, what has also been getting worse is this sudden urge to go lie down as if the fatigue wasn't enough, THIS fatigue was like someone anesthetized me. As soon as I laid down, I was out HARD. It was like being in a coma and not moving any body part-worst fatigue imaginable. This would last from 30mins to an hour. Then I would slowly come out of it. I started to get tingling in my arms and it would go away after awhile. I also noticed that if I laid there and sent a mental command to think about one of my arms or legs, it gave me a strange feeling mentally-cant explain it.

As of the past two weeks, these symptoms have gotten progressively worse. I have had all limbs go partially numb, with these weird tremors in all my fingers and toes, tingling on the bottom of my feet and all throughout my hands. It is like my nerve endings are having a fireworks show. Now my fingers have twitches and tremors 24/7. I have had strong chest pain on the left side as well as trying to catch my breath when either walking or speaking although my oxygen was ok at 94. This past Monday, I had my right leg go completely numb off and on for several hours. As I was talking to my wife, I felt a strange feeling in the area of the left side of my head. I went to drink a sip of water and to my astonishment, my swallow mechanism would not engage. It was like it was paralyzed. Then I sat down and my left orbital socket area started to spasm severely for about 4-5 seconds and stop. Few seconds later, I completely lost the entire left neck muscle area and could not hold up my head.

I went to the ER reluctantly because I feel they never find anything but wanted to make sure. During my time in the hospital, I found that I was having issues telling my hands and feet to move. It got to the point that in order to move them, I had to wiggle my shoulders or hips to get the limbs to move. If I let them sit for at least 20-30 seconds, I couldn't move them again. My heart checked out fine and they did a CT scan of my brain and I got an MRI done yesterday. The only thing it shows so far is mild swelling around the optic nerve sheaths and the right frontal lobe has a prominent perivascular space-6x22 in size represented in the subcortical white matter. I read this can be completely normal and sometimes not.

So, in the past few days I have narrowed down these attacks: start to slowly feel even more exhausted than I already do that climbs in intensity until I have to lie down. After lying down, I am out. Its like I start to already dream when I'm awake still. Then the tremors and twitches increase dramatically with the chest pain starting up again. Ill feel my fingers pull inward but not quite a clench. Various muscles contract, let off, and contract again. Eye twitch here, thumb yank there, foot numb then not...at this point is where I have a hard time getting my brain to send messages to get a foot or hand to move which usually I cannot. The chest pain and intensified muscle issues can go anywhere from an hour to four depending and longer. I am also unable to walk without assistance. The next day, I am somewhat able to do my usual fatigued living until it hits again later on. I almost always get these attacks in the afternoon. Has anyone else had anything like this?

[jimmylegs]

hi and welcome you've provided a lot of detailed info on your symptoms, which is useful and many of us will be able to relate to at least some if not all of your symptoms and experiences.

i am curious about your description of life before the problems developed. can you tell us more about the meaning of epitome of health, in your experience? other than having avoided colds/flus?

[Redeemed]

Absolutely! I have been very active over the years even wearing out my kids when we went outside. I have lifted weights, taken Tae Kwon Do for years and have been full of energy. I have always enjoyed running and all sorts of activities. When I started to feel fatigued, it drained me of everything. This happened when I turned approximately 37-38. I had thought it was something in my diet or allergies or another reason. I have noticed every year, everything about my quality of life has slowly ebbed away to where daily activities like getting ready for work or simple household chores are monumental. I wake up exhausted even though I've had sleep studies and such.

It's one of those things that is hard to explain. It's like this cloak comes over you that isn't you but something that is alien to your own body. Although I exercised when I felt exhausted because I wanted to keep my cardio up as well as maintain proper weight, I never felt good running on the treadmill even though in the past I enjoyed it. Over the past year, I have found that my endurance to go on the treadmill has drastically dropped to the point that I feel my body rejecting the activity if that makes sense. As of December, I have not even been able to get on the treadmill and that isn't like me.

[jimmylegs]

ok more great info

what has your diet been like traditionally? preferred carbs, proteins and fat sources? main fluids?

any history with meds for anything? (i know that's not consistent with the epitome of health description, but just checking) either pharma, or over the counter?

what made you think diet or allergies? anything specific? or was that just something that crossed your mind?

[Redeemed]

Traditionally, I wasn't always the healthiest eater. I changed that years ago when I started to feel wiped out thinking something could be off nutrient-wise. I went to a diet that consisted of yogurt, almonds, chicken or fish for lunch and a meat source with broccoli for dinner on the average daily intake. I drank one source of caffeine in the morning and water the rest of the day. I went to an allergy doctor thinking that perhaps it was environmentally related and even checked for certain foods. All the blood work came back normal. Plus, I don't exhibit any allergic reactions to anything but cats.

I have been to immunologists, rheumatologists, gastroenterologists as well as other doctors who all ran blood work and the only thing that came up is 4 tests for an abnormal light chain ratio. I also currently have an elevated reticulocyte count with toxic granulation but doctors never seem concerned about that. Epstein-Barr virus was shown to be at a high level but obviously most of us have had at one time in our lives. Potassium, magnesium, B12, TSH, etc. have all shown to be in range. The only thing that I have to keep an eye on is my Vitamin D now drops.

I have a neurology appointment next Wednesday and this is the last type of specialist I have yet to see. I have been off work since Monday save for working half days from my home. I have spent many years thinking it was just me and I would consistently write everything off when doctors wouldn't find anything on blood work. After the past 4-6 weeks with these tremors, tingling, etc. it has gotten increasingly worse. When I look at my hand right now, it's having a field day. All fingers are moving like they are having their own dance party.

Also, for some strange reason which no doctor can answer, is the fact that I lost my appetite completely three years ago. Since the first day it happened, I have not had even one day with a hint of an appetite-nothing. It has 100% vanished. It's tough to make appointments to see doctors because I'm not the type to go on every symptom I feel, but it's reduced my life tremendously. It didn't happen all at once but took years and every year seems to diminish me that much more from the year prior. Only this year am I seeing a substantial increase in problems.

[lyndacarol]

I have a neurology appointment next Wednesday and this is the last type of specialist I have yet to see. I have been off work since Monday save for working half days from my home. I have spent many years thinking it was just me and I would consistently write everything off when doctors wouldn't find anything on blood work. After the past 4-6 weeks with these tremors, tingling, etc. it has gotten increasingly worse. When I look at my hand right now, it's having a field day. All fingers are moving like they are having their own dance party.

Also, for some strange reason which no doctor can answer, is the fact that I lost my appetite completely three years ago. Since the first day it happened, I have not had even one day with a hint of an appetite-nothing. It has 100% vanished. It's tough to make appointments to see doctors because I'm not the type to go on every symptom I feel, but it's reduced my life tremendously. It didn't happen all at once but took years and every year seems to diminish me that much more from the year prior. Only this year am I seeing a substantial increase in problems.

I believe that if you see a specialist about a problem, he will find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize." By the way, I wonder if you have seen a hematologist.

I think clinical symptoms are more important than blood test results. Test results are not infallible; they can be inaccurate due to diet, supplements, or they can simply be processed incorrectly.

On a personal note, I also have not had an appetite for YEARS!

[jimmylegs]

you are a treasure trove of info

so question. what was the unhealthy diet like, and how long ago is years ago? when you switched your diet, did you have the help of a specialist? had you tallied up whether your new choices would help you meet daily recommended amounts of all the different essential vitamins and minerals? may i inquire re how often you eat red meat, and from what source? any game? do you eat shellfish at all? if so, which and how often?

can i ask what your water source was? tap? spring water? filtered? if filtered, by what method?

re those abnormal hematology results, i wouldnt ignore that personally - if it was me i would be reading up on all of them, looking for links and possible connections. have you done that already? learned anything interesting?

re EBV, you can do things about viruses. do you have the results for serum Potassium, magnesium and B12? ranges can be utter bs so it's pretty good idea to have a look at the actual numbers, and compare them to a few ranges not just the ones at the local lab.

re the vit d drops. how many IU are you taking per day? how long have you been doing that for?

there could be some very logical reasons for your loss of appetite. do you eat regularly anyway, in spite of low appetite? will be interesting to see the next batch of info

[jimmylegs]

thought i would have a look at possible influences on appetite:

http://www.merckmanuals.com/home/hormon ... blood.html
"Hypomagnesemia may cause loss of appetite, nausea, vomiting, sleepiness, weakness, personality changes, muscle spasms, tremors, and loss of appetite. If severe, hypomagnesemia can cause seizures, especially in children.
The diagnosis is usually based on blood tests indicating that the magnesium level is low."
note that it doesn't say 'below the normal range' - low normal is a concern when it comes to magnesium.

seems to link back to "tremors, tingling, etc. ... All fingers are moving ..." doesn't it. mag status can also become an issue when taking vit d3 on its own. i know that one personally, all too well :S

poor zinc status is a very well known potential contributor to loss of appetite as well. both mag and zinc interact with vit d3.

that's just for starters more possibilities to consider, of course, but if you are not balancing that d3 intake with some cofactors, and if your diet isnt nutrient dense enough to meet or exceed daily recommendations, plus cover the demands of the supplemental d3, that could be causing some issues that won't get picked up by standard testing - esp. for things like zinc and magnesium which have enormous so-called 'normal' ranges, making docs and patients much more likely to misinterpret low normal results as 'fine' when in fact, deficiency has been shown to exist well within the 'normal' ranges for both of these essential minerals.

[jimmylegs]

re the high reticulocyte count:

this is from a rat study, but still interesting:
http://jn.nutrition.org/content/134/2/416.full
"Because Cu is required for Fe utilization, many physiologic responses that require Fe were affected by both deficiencies, including lowered blood hemoglobin (Hgb), lower RBC volume and Hgb concentration, and an increased number of reticulocytes. Cu and Fe deficiencies together worsened some conditions, i.e., lower Hgb, lower RBC Hgb, increased RBC distribution width, increased number of reticulocytes and nucleated RBC, and a higher platelet count."

could be interesting to see the rest of your blood count info, not just the elevated RC