Selfish Post, but too tired to read through all the info..

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

Selfish Post, but too tired to read through all the info..

Postby grumpka » Sun Apr 06, 2014 9:03 am

Hello,

Must be perfectly honest, I'm being lazy by posting this. I could and should read old posts to see if anyone else has similar issues. However, too much reading. I'm really tired and tired of worrying..

The whole subject of M.S. is one I avoid. I was diagnosed with TM in 2011. 95% full recovery. Still had minor issues, sensory related, but compared to most I felt blessed and just went on with life. (minus the constant complaining to my wife about how crappy I felt at times, lol).

During the TM experience, I did have a diagnosis of 'early stage m.s.'. However, this was only noted on the MRI report. The nero even said it might not be M.s. and the additional questionable brain lesions were common as we age. (I'm only 42 now).

Long and short, my post TM symptoms would act up when I was catching a cold or stressed or under the weather. Point, they were never that bad. Sure, I would bring it up to my wife. However, not too many times I got worried about it.

Here we are in 2014. Well, not so sure what is going on is just TM related. I have all new symptoms. Many of the old seem worse. Started with twitching. Twitching would be in wrists, arms, legs, even under my eyes. Heck, had minor nose twitch. Read up on that, and talked myself into believing this is just vitamin related or some other common thing. NOT M.S. though....

More recently, (past few weeks), I have a 'sun burn' feeling that started in my lower left forearm. This goes up the bottom of my left arm, has now spread into left shoulder blade and painful in the right shoulder blade. One night, I woke up with the back of my neck feeling numb and a bit of the sun burn feeling. Face had even gone slightly numb on one side. Moving ahead a few more days, A sharp back pain went laterally across my back between shoulder blades and even right to my chest. Sitting still was fine, if I moved it hurt. Shooting pain. This subsided to a large degree just in a few days. Not so bad today.

What I am getting is more 'strange' areas/patching of the burning almost numb feelings in right arm now, hardly noticeable and right leg. (right leg was the one that still has been most affected by TM). Getting that 'tm/ms' hug time to time, along with patching of burning even around waste, tummy and random stops.

Here is the part that has me really wondering... Can M.S. symptoms just come and go over hours/minutes/days ? If this is M.S., why would one day be ok, and the next day all sort of things are going wrong? Is that even possible?

My general practitioner is sort of a jerk. He seems to ignore me. Everything is just 'in my head' or stress. I really know I need to go to the neurologist, but trying to put it off. Honestly, I don't think I can afford the meds even if this is M.S. for sure....

So, if anyone with M.S. diag can relate to the symptoms, it would at least be some sort of a clue....
Am I going crazy? Could this all be stress? Can this just be the original TM lesion acting up? Who knows..

Help is welcome....

Thanks so much.
~GRUMPKA~
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Re: Selfish Post, but too tired to read through all the info

Postby jimmylegs » Sun Apr 06, 2014 11:23 am

hey there :)

has any one sent you for nutrition testing? smart to rule out nutrient problems linked to symptoms like burining, twitching, numbness and so on.

before i got diagnosed i would feel different day to day. i knew i had a problem with b12 and i would let the symptoms get pretty bad before taking a pill and it clearing right up. then that stopped working and not long after that i got the ms dx.

stress causes you to excrete minerals that could worsen symptoms. so if your symptoms get worse when stressed, your nutrient status could well be playing into it.

might be an idea to start journaling, see if you can link up what you eat and drink as well as your stress level, with how bad your symptoms are.
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Re: Selfish Post, but too tired to read through all the info

Postby grumpka » Sun Apr 06, 2014 11:34 am

Thank you for the info. We spoke a long while ago on a thread I posted.

I am taking B12 each day, plus multi, plus vit c, plus omega complex.

Stress is null yesterday and today. Symptoms do seem to get worse with stress, but not only factor.

Had complete blood work, including some related to possible diabetes. Happy that came back fine.

I think I know the only answer is a MRI. That makes it pretty easy. Lots or new lesions, I have my answer. Clear MRI, most likely something unrelated to M.S. or T.M. Main reason I don't want to go is money. MRI is going to cost $$$. Lots of $$$. Even with insurance, you have to meet out of pocket, which thanks to new health care laws is even higher than prior! Not getting on that subject....

Anyway... thanks. Was figuring that these were either very common M.S. related or not.... :(
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Re: Selfish Post, but too tired to read through all the info

Postby jimmylegs » Sun Apr 06, 2014 11:48 am

hi again! so the blood work, did you get your own copy?
docs often miss quite the list of nutrients that could be trouble for ms.
i am curious if they measured your zinc, magnesium and vit d status.

your supplement regimen combined with your symptom list does look like there could be some worthwhile things to investigate.

for one thing, how many mgs of magnesium are you getting daily in food?
here's a list - if you tally up, what would be your daily intake, roughly?
http://www.whfoods.com/genpage.php?tnam ... #foodchart

symptoms of nutrient deficit are often similar to ms symptoms, because the average ms patient does have low levels of the same nutrients. it's knowledge that's out there in research, but very weakly applied in medical practice.
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Re: Selfish Post, but too tired to read through all the info

Postby Youarethecure » Tue Apr 08, 2014 9:03 am

if it is ms it could def act up in that way. it is different for everyone.

Some days I feel 100 percent normal and healthy, while other days everything or just one thing acts up.
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Re: Selfish Post, but too tired to read through all the info

Postby grumpka » Wed Apr 09, 2014 4:00 am

Youarethecure wrote:if it is ms it could def act up in that way. it is different for everyone.

Some days I feel 100 percent normal and healthy, while other days everything or just one thing acts up.


I'm laughing, as I was just thinking I was going crazy today. Woke up with very minimal symptoms. Was actually thinking I was making a big deal of nothing and this will end up being some like pinched nerve or disk issue. Perhaps, just old TM lesion related....

That's the struggle though. Once you have had TM, you start to assume other odd happenings must be related to TM. Except, my TM was over three years ago and the new symptoms appeared in totally new regions of my body. I never had arm, hand, upper back, neck, or face issues before. Add to that, I've been fighting a little cold. Stress, illness, fatigue always worsen any symptoms. Add some new events, plus not feeling well all add up to something is going on.

Thanks for chiming in. I do appreciate it. Hope others will comment.

Have a great day.

~Stephen
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Re: Selfish Post, but too tired to read through all the info

Postby jimmylegs » Wed Apr 09, 2014 5:17 am

still curious re the above, grumpka!
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Re: Selfish Post, but too tired to read through all the info

Postby grumpka » Wed Apr 09, 2014 12:34 pm

jimmylegs wrote:still curious re the above, grumpka!


My diet is horrible ;)

I don't eat a lot of junk food out, but I do eat chocolate. So, most likely a higher sugar intact than I'd like.
I get a reasonable amount of veggies and fruits each day, but not up to what it should be.
I have a nice mix of fish, chicken, and some red meats. Wife cooks for our family every night.

As to specific labs, I'd have to do some digging at some point. Honestly, I appreciate where you are at and your focus on this. However, the realization is MRI=Real results. New Lesions=M.S. It's very easy and far less complex than figuring diets.

I posed the question for one reason. If many others had similar symptoms, it is likely I'm on the M.S. track. If not, I would be less concerned about it. It's the old 'if it quacks like a duck, acts like a duck, looks like a duck, it's most likely a duck.

I'm respectful of you interests and take on this. Right now though, to be polite, I'm just scared and looking to hear a little from those who have MS or TM to see what they deal with. That's where my head is at. Hoping to find a local group to get some support and insight for what might be ahead. If diet plays into this after a positive diagnosis of M.S., I'll have an interest....

As always, thanks for the sharing your opinion and info.
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Re: Selfish Post, but too tired to read through all the info

Postby Anonymoose » Wed Apr 09, 2014 1:39 pm

Hi grumpka,
Sorry to hear you're going through this kind of stuff. I'll try to help you out with details of my experience...

My first ms exacerbation was in early twenty ten. I recovered completely...had some l'hermittes that went away at some point (didn't notice). Second exacerbation was early 2011. It left some sensory issues in my hands that consistently worsened with physical activity. At some point I began getting a dark cloud in my left eye vision when exposed to heat. Third exacerbation was summer 2013. I think it left me with a little sensory stuff in my legs but that's it. I usually don't get any new symptoms between relapses. Now I'm going to annoy you. Lol. When I did the antibiotic protocol, exacerbation symptoms would dance around...gut flora has an effect upon vagus nerve and the inflammation from the antibiotics messes with your nerves. Last fall, I was treated with iv and intrathecal rituxan. Most msers get a nice vacation from ms after rituxan because it knocks out most of your B cells and dampens your T cells as well. Post rituxan mris are stable or improved in a lot of msers. Unfortunately, I didn't get much of a vacation (vision issue did clear). With a good part of my immune system and ms supposedly on a break, I've been wrestling with numerous sensory issues for the past six months. They have all been related to nutrient issues (iron/ferritin, copper/ceruloplasmin and vitamin d/calcitriol). My serum levels are off but not horribly far out of range yet I can feel everything that is out if line...and I can make it better in days with the right supplements (I can make them come back by supplementing factors for things that are too high or supplementing something that is low but is missing necessary co-factors). My theory is that those of us with myelin damage can feel the out of range levels simply because we have naked diva nerves.

Sooo...Jimmylegs (who saved my butt with my current situation) may wind up being your best resource for help with your issues. Wouldn't it be great if it were just nutrient imbalances? Fingers crossed for you!

(Sorry to annoy you with more nutrient talk but knowledge is power and we need all we can get! :) )
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Re: Selfish Post, but too tired to read through all the info

Postby grumpka » Wed Apr 09, 2014 2:12 pm

Thanks Anonymoose ;) Love the screen name. I'm "grumpka" on the count, well, I'm grumpy, as you can see ;P

Oh, don't get me wrong, I value Jimmylegs very much and don't want to take anything away from what he says or has to say. I very much appreciate his input. It's just a matter of ME, not him. As you might have guess, I'm down in the dumps and the last things I want to hear about are diet changes and all that. It may in fact be the best solution. Right now though, I'm still trying to deal with all this. TM was bad enough. I was very blessed via the fact I made nearly a full recovery. However, the residual just adds to my grumpiness. ;)

Now, realizing that my original Neuro might have been more right than I wanted to admit, I'm worried. I even found a 2nd neuro who refuted the original finding of early stage M.S. I guess that bought me three more years of not thinking so much of those odd symptoms that come and go. Reality is, you just don't get a baker's dozen of misc symptoms for no good reason. I had/have TM. M.S. is very likely and probable.

I just honestly have to deal with that first. Naturally, I don't want to be in pain or always have a hard time going to sleep on the count something is burning, tingling, stabbing, or just painful... Add anxiety and a bunch of other misc issues, well, I'm sure you know where I'm coming from.

Thanks for the helpful info. Honestly, it's what I need. I try to read through the older posts on the forums, but hard to focus. That was my honest OP. I'm a bit lazy and selfish. I know it is wrong of me, and I should sit down and take this more serious by doing the proper research and reading. With raising a family and working, it's hard to bring myself to do much more than follow this one thread, LOL.

I do thank you though. (and Jimmylegs as well... I feel bad, wasn't trying to bash anything, just not 'there' yet).....
~GRUMPKA~
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Re: Selfish Post, but too tired to read through all the info

Postby Anonymoose » Wed Apr 09, 2014 4:32 pm

No worries, grump. :) I throw way better tantrums and whine a lot more about Jimmylegs' dietary recommendations than anyone (she wants me to eat sweet potatoes and boiled kale by the bucketload. Bleh!!). We know where you are coming from.

When you are in a better place and start reading up on ms and current research, I think you'll find a lot of hope (my favorite at the moment is Michael Pender's research on ebv and ms. He treated someone with secondary progressive ms with T cells trained to target just ebv infected cells and the patient experienced improvements. Unheard of and amazing.)..that is, IF you have ms. I'm too stubborn to accept that it can't be stopped. There's a twisted sense of hope in that too.

And quit beating up on yourself!! No one can get out of a funk thinking like that. (Yes, I am the boss of everyone.)

Chin up...fake it until it's real if you have to. :)
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Re: Selfish Post, but too tired to read through all the info

Postby grumpka » Wed Apr 09, 2014 5:43 pm

Anonymoose wrote:No worries, grump. :) I throw way better tantrums and whine a lot more about Jimmylegs' dietary recommendations than anyone (she wants me to eat sweet potatoes and boiled kale by the bucketload. Bleh!!). We know where you are coming from.

When you are in a better place and start reading up on ms and current research, I think you'll find a lot of hope (my favorite at the moment is Michael Pender's research on ebv and ms. He treated someone with secondary progressive ms with T cells trained to target just ebv infected cells and the patient experienced improvements. Unheard of and amazing.)..that is, IF you have ms. I'm too stubborn to accept that it can't be stopped. There's a twisted sense of hope in that too.

And quit beating up on yourself!! No one can get out of a funk thinking like that. (Yes, I am the boss of everyone.)

Chin up...fake it until it's real if you have to. :)


A, blush blush, didn't know Jimmylegs is a she ;) oppps.

B, thank you :)

I'll be setting up an appointment with neuro soon. Even if I want to put it off, I think I'm driving my wife nuts. I sometimes think she doesn't understand what this is like. Good lady, but I feel like she doesn't get it. I've tried to explain nerve pain to be similar to torture. You have nearly constant nagging pains and discomfort. Never enough to really knock you down on your knees. Just enough to slowly wear you down little by little. Even without M.S., this is what TM does to us. Going on four years of burning and pain in leg. Some days I just pray for a break. Just one day to feel normal, oh how cool that would be. Oh well. I have to end my pity party. LOL. Need to learn to be grateful for all the amazing things I have and stop worrying about the rest. '

Thanks again for the encouragement. Much needed, and much appreciated. I honestly have no one to talk to. Who the heck would remotely understand all this stuff. Thank god, they can't!

Have a great evening.
~GRUMPKA~
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