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So tired... when to give up?
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SirGCal posted:
I started having symptoms at 22. Mostly an inconvenience. At 33 it started to spread. Now at 38 I'm fully in a wheelchair and can't even lift my newborn twins. I have Primary Progressive... weee...

My latest list of symptoms:

Numb from the bellybutton down. Unable to walk more then a horrible hobble. Can't even get to much of my home.

Both hands numb/burning from the elbows down. Can't work the hands very well (and I used to do calligraphy and type over 120wpm).

And now even my face. My ears feel like someone is pulling them down hard and even my eyebrows feel heavy. And my cheeks.

Plus the vision problems... But seeing my boys and not being able to hold them is what's killing me the most. I want to help them, play with them, be with them, carry them... but I can't. I've almost dropped one of them once already. No more.

Bladder and bowel release issues... Balance issues obviously, but also shaky extremities when I can use em. I don't dare feed the babies cause I'll put a spoon in their eye. I do myself more then I care to.

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The real problem is there have never been fingers in the brain scans (so far, maybe now, suspect more scans on the table this week.). A few lesions on my spine and neck but that's it. But I'm spiraling out of control so fast.

I was on Oxycodone for pain for years, stopped that recently (though the pain returned obviously, just can't afford it anymore with the doctor visits, etc.) Side effects from everything else were too severe. Also on Baclophen for spacity and now on Topomax to try to fix pain but don't notice it doing jack. Almost wondering if this latest rash is entirely something else. But what, mold poisoning?

I'm also on a Gluten free diet now. It helped the tiniest bit but... that's it. Still owe the Mayo some $30k for services that didn't do a darn thing... not to mention the other medical bills.. Yes I have insurance but that's all another topic...

Lately I'm soooo tired... can't stay awake (though even when I do sleep, it's 3-4 hours a night TOPS)... I know one thing leads to the other but, I just can't sleep. Even got one of my doctors to give sleeping pills but they do nothing.

I used to be so physical. Raced cars, dirtbikes, etc. Ran, PDGA, sports of every kind. Competitive swimmer and diver...

So the question is... Even at this point, the Neuros just seem to look at ya and shrug... with the 'what do you want us to do bout it' look... Even if this time it was something, say Mold for example, they wouldn't notice cause I have MS, it's just more MS... I'd LOVE for them to say "Hey, it's going to take a few years but you have a poison from something but you're going to get a bit of X back once we fix the source and cleanse your body.." but they never do...

After 16 years, and going from discomfort, to pain, to narcotics, to desperation and dropping all meds but the few we know that work to try to find a better solution... Heck, I've actually stayed away from places like this, groups like this. Now what the heck... I do have a blog that for a while kept a running history... Then I'd stop, then restart it for a bit then stop, etc... No one read it but, it was more for me.

There has to be something to this dang disease. I've heard so many rumors. Stemcells, placenta, etc. Is there any hope? Especially for PPMS?
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padplum responded:
I feel for you. I have primary progressive MS as well but I am not in the same state as you. I have foot drop but don't let it stop me from doing the things I like to do. I'm almost certain my progression has been a slow decline but I always focus on the positive. My biggest savior has been exercise, in particular, martial arts. I have been studying Tai Chi and Qi Gong for over 11 years and practice it daily. It has not only helped me physically with my flexibility and balance but also mentally. Tai Chi is known as "meditation in motion" and can be done anywhere. Meditation is one practice that is recommended for MS patients to help them reduce stress which can cause exacerbations. I plan to teach it to the physically challenged in the near future, whether the person is mobile or in a wheelchair. It can't hurt to learn some simple movements while sitting. Most of all, please don't give up and stay positive. You have twin boys--experience them as best as you can.
 
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SirGCal replied to padplum's response:
Replying from the hospital. .. God I wish. Just to be able top stand up. .. I want top teach my boys to pitch like I did before throwing my arm out (really teach, not just talk from a chair>, pay basketball, drive stick. .. Heck if I don't improve before I leave the hospital, they are going to pull my license all together. Another darned lumbar puncture today. This hospital admitted me Saturday (I went in for kidney failure tests, they see MS history and decide to go another way). Full head to tall, literally, MRI. They decide my scans don't suggest MS with a clean brain. sure some spine ones but they want another lp and 3 days of The SoluMedrol again. Glad I can actually work from my laptop.

So angry at the world and their movable limbs. .. (shakes an angry thought at it !)
 
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whitefrazier responded:
hello. I'm sorry to hear that you are having a rough time. I'm sorry to hear that you are having a rough time. I think we are all in the same boat. I currently have RRMS and now I am going to the next stage. I am also having some vision problems bladder and bowel problems also. My symptoms are worse now in the summertime because of the heat. I am so tired of taking meds. We develop a tolerance after a while. Has anyone tried acthar gel?
 
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SirGCal replied to whitefrazier's response:
Heat never bothered me. Cold kills me. Good thing since I'm in Texas. I'm basically a vegetable now with my situation. Hospital gave me another three day course of SoluMedrol [useless> and sent me home.

I did nothing but read my cell phone. Had nothing else. Found the one microscopic glimmer of hope. A Dr. Terry Wahls MD who was also already in a wheelchair. Power at that. And now walks again. The wife and I have spent the last few days clearing the fridge and pantry and replacing it all. Cross error fingers. Expensive yes. Radical yes. But WTF do we have left?

I firmly believe at this point the medical doctors are totally in the dark and clueless with MS. I think Dr. Wahls is onto something huge. And that cam be why there hasn't been a cause to do many medical issues in the last century.

I've got nothing left to lose. I'm doing it. It is this or no hope at all. We know stem cells are not having quite the huge repair we were hoping for and still decades away from most of us being able to see them. I'll be dead of old age. Thanks FDA and big Parma....
 
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mrscrg responded:
I was 22 when I was dx'd. Now I'm 30 and dealing with majority of the symptoms and issues that you've mentioned. Despite how bad it may seem, you must keep a positive attitude and your spirits up. Never give up. Keep fighting. Yes, there have been plenty times when I get frustrated and want to left go but even if we did it doesn't really accomplish anything but more suffering. Enjoy the people around you and keep the faith. Always look for the next day to be better than today.
I've read Dr. Wahls book and tried following her process. I did feel and she a change. My husband and I are starting to go gluten free. Nutrition seems to be the way to go bcuz nothing else works. My neuro told me, after my last MRI, that I have an aggressive form. I have lesions on my spine and brain. I have a huge one about the size of a walnut on my brain.
So although my status may look bleak I must keep going. I still got life to live, things to do. My faith in God helps out alot especially when I an down and out.
So I say to you we have to keep fighting by living our life the best way we can. Not many read my blog either only my hubby and bff
 
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mrscrg responded:
Try only grassfed and organic meats. It will help. It is expensive to do with house bills, medical bills and one income.
 
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SirGCal replied to mrscrg's response:
I've been doing only the Hardcore diet and grass fed already for a week almost. Can't be more expensive then the 100k in medical we already have. Should have done this year's ago. Meat tastes better too. Screw all the other steroid induced hype meat.

But my problem might not be MS this time. They can't figure it or but it's moving too fast and changing daily which doesn't mesh. Tests ongoing for all sorts of wild things.

weirdest thing is, sugar already tastes bleh to me. And I was a Coco-holic from hell before. Sodas by the case, etc. Yuck now. Go figure. Lock your mind into it and it helps you stay the course.
 
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mrscrg replied to SirGCal's response:
SirGCal,
I have been doing the natural eating off and on. I"m on now. Hoping to stay on. Its expensive for us because we are living off one income. Thank God my husband works in engineering. Having MS is very expensive as well.
You are right about grassfed meat tasting better. Not having salt isn't bad, its the sugar that I have a problem with kicking. I love slushes. Everything else I can substitute for. I drink water just not enough because it wakes me up at night and I can't go back to sleep for about 3 hrs. I went for a few years with either not sleeping at not ot only sleeping 3hrs. Sleeping aids don't work.
I've tried Physical Therapy, Massage Therapy, and Chiropractic Therapy all at once. I stopped because you can imagine how much that was for a month. Someone just suggested that I try acupuncture also and tumeric to decrease the inflammation. I suggest you try one, some, or all. They will give you some relief. The shaking in the limbs for me comes from not having enough muscle mass.
 
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mrscrg replied to SirGCal's response:
Let me know how everything goes please.

Praying for you.


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