Need some support

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby jml945 » Thu Apr 07, 2011 7:28 am

Thanks everyone for your support. This week has been especially rough. Yesterday I walked to the bathroom in my office building and had the worst balance/walking problems of my life. I felt as though I might not be able to walk back to my office it was that bad. Of course I told my wife about it and she said "well stress can do that to you". She doesn't get it.

Anyways, I will look into CCSVI. This is the first time I have ever heard of it, so who knows it might be an option down the road at some point.

I guess the only good part about my symptoms getting progressively worse is that at some point there will be some visible symptoms that doctors simply cannot ignore and dismiss as "anxiety".

I will try to give as many updates in the coming months as possible.
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Postby Loobie » Thu Apr 07, 2011 9:52 am

jml945 wrote:I guess the only good part about my symptoms getting progressively worse is that at some point there will be some visible symptoms that doctors simply cannot ignore and dismiss as "anxiety".

I will try to give as many updates in the coming months as possible.


Man, I hate to see you thinking like that. If the people around you think you are putting on, screw 'em. I know that's not what you can tell your wife! but man, give her some shit to read about neurological issues. She sounds like someone who would need to see the bone sticking out of the skin to believe you. Just remember, there are LOTS of people who just can't wrap their minds around anything they haven't personally experienced. I hope you're not dealing with that, but c'mon!

I know exactly what you felt like when you went to come back from the bathroom. I hate that.
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Postby jml945 » Thu Apr 07, 2011 11:40 am

My wife just has a difficult time empathizing, it's just not her personality type. I am definately the more compassionate, easy going of the two, she is the more driven, go get em type. So I don't totally blame her, but sometimes I do need someone to hear me. I guess it's hard for her because I do constantly have new issues come up all the time, whether it be pain, weakness in my legs, or problems with my eyes, shingles, acid reflux, fatigue or something else, I am always having issues. She gets really tired of hearing about, and no matter what the severity she has a hard time hearing me out because she gets stressed about it.

That's part of why I come on here. Even if I don't have MS, I know that most of the people on here can understand the type of pain and discomfort I am dealing with on a daily basis. That alone makes me feel less... well, alone.

How do you deal with other people who can't understand your condition?
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Postby lyndacarol » Thu Apr 07, 2011 12:53 pm

Joel (jml945) –

You had asked if anyone had gotten better simply with a nutritional program. Check out Dr. Terry Wahls' story – she is an internist in Iowa City, once in a wheelchair, now biking 5 miles a day.

http://www.terrywahls.org/

As recently as two months ago, she was recruiting for her clinical trial to test out the diet and exercise program she used to see if this would help other people with MS. Criteria for the trial includes a diagnosis of secondary progressive MS (not often included in studies), ability to walk 25 feet with or without assistive devices, a willingness to cooperate in strict diet.

First and foremost, the diet allows NO sugar, no starchy vegetables, but many dark green leafy vegetables. She believes that she is targeting a mitochondrial problem.

I believe her diet reduces blood glucose so greatly that the pancreas stops producing excess insulin and the body switches over to using ketone bodies as the energy source.

Naturally I would believe this – I am the "insulin girl."
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Postby MSBOB » Sat Apr 09, 2011 1:11 am

Joel,

I had a extremely similar situation as you. I am male, 32.

I was married back in 2003. I remember my ex saying "you don't even know if you even have MS," and "it is just stress," and "you are probably causing symptoms by worrying about it,"

In retrospect, I was not a very good person during those short years as a married man. I was so focused on myself, exercise, diets, and studying MS that I pushed my wife away. She left me, but mentally I left her first. I thought the same as you, "she just doesn't get it." That was not fair. I wanted more compassion than I was willing to receive from her, and I was doing nothing for the relationship except being a major downer.

I am not implying that you have, or will have the same relationship struggles. I can only say this: As a married person, you do have a responsibility to be there for your loved one, just as you expect the same. If she loves you, it doesn't matter how f'd up you get physically; It does matter how f'd up emotionally you get, especially if that is sustained over a long time (like a couple years).

Lessons I learned that I can share:
1. Take your wife out on a planned date. Do this often.
2. Go see a psychiatrist/psychologist whether you want to or not! She will love you for it, and you might strengthen your own resiliency.
3. Deal with the disease as it comes, (I am still a big fan of low-fat diet and supplements)

I got my diagnosis earlier this year. I thought after "dealing" with "MS", that it would be easier to handle the diagnosis. It still sucked.

I hope you find this helpful.
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chronic illness

Postby Selmahope » Sat Apr 09, 2011 5:47 am

Take a look at the many recovery books/stories in amazon--Who Said so (old book), Rising Up by Anna York, George Jelinek (spelling?) book, MS Recovery Diet, Minding your Mitochondria by Dr. Wahl's, Ann Baroch (spelling book?). There are plenty of healing stories out there. They are good inspiration. The right diet, spiritual/meditation, exercise, detox--has turned many people's lives around. You are young--so now is a good time. There are no magic drugs. Check out Dr. Wahl's foundation and facebook page-people are healing and talking about it on her facebook page. Healing is possible. The path is different for everyone. But there are plenty of stories out there if you look for them.
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Postby maynaka » Sat Apr 09, 2011 8:31 am

Selmahope,

I found Terry Wahls on Facebook a few weeks ago but she never confirmed my request as a friend. Does she have more than one site?

Thanks.
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Postby maynaka » Sat Apr 09, 2011 8:40 am

Selmahope,

Please disregard my last post. She just confirmed my request. :D

Thanks.
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Postby jml945 » Mon Apr 11, 2011 12:46 pm

MSBOB,

Thanks so much for your input. I can safely say that I have not been the best husband I could be, and that I do focus quite a bit on my illness. Actually, in many ways I tend to "obsess" over my illness, as I do with many things in my life. None of this has particularly helped my relationship with my wife, or with anyone else for that matter.

However, I do try to meet her half way on a lot of issues. She doesn't like to do much in the way of housework, or yard work, so I step in and do more than my share despite not feeling well most days. This past weekend I did a lot of housework on Saturday after I had an entire day of class, and on Sunday. She spend most of that time watching her favorite television shows.

Not that I'm totally blameless. But I just wish that she would TRY to understand what I'm going through considering how I try to make concessions when I can, but I do understand it's a difficult position to put her in all the time.

And while I really look forward to the time when I get a definitive diagnosis, and a doctor tells me "you have MS" (or whatever I happen to have) I will be really relieved, I'm also afraid of how my wife will react. I fear she will no longer want to have children, for the obvious reasons. I fear that she may not want to stay married to me. I fear that I won't want to have children. What if I have a progressive form of MS where I lose the ability to walk and my wife has to take care of me all the time? Would it be fair for me to put her through that when she could be happier either on her own or with someone else? These are the things that will undoubtedly create lots of doubts in our relationship, particularly because I know that she is not particularly great at being compassionate or nurturing. The ironic part is, I believe that if she were sick I would do a pretty good job at taking care of her, since I do have those qualities.

I could keep going on but I'll end it here. Thanks again for your input.
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Postby euphoniaa » Sat Apr 16, 2011 3:08 pm

Loobie wrote:One other thing is to see a physiatrist. Not a psychiatrist, that wasn't a misspell. They can do an EMG on you where they can see if you have slow nerve conduction and whether or not you have central nerve damage (probably MS or something), or peripheral nerve damage (something like a pinched nerve or something like that).


Hi jml,

I'm sorry you're going through all this. I have no real experience with living in Limbo Land like many others do, although I very likely had MS for 30 years before my 'instant' dx. :) But...I liked a lot of Loobie's advice, especially the part about seeing a physiatrist. I've recommended them many times when posters seem to have a difficult-to-dx condition.

After years of physical weirdnesses and even an official diagnosis of hypochondria from a psychologist, I was sent to a physiatrist (neuromuscular/skeletal/pain/rehab guy) for possible carpal tunnel. Even though EMGs quickly dx'd it, along with HNPP, he didn't stop there. His basic neuro exam made him suspect central nervous system involvement also and he sent me for an MRI. The next day I had a dx of positive MS and a suggestion that I head to a neuro (my first one).

I always figure that their background gives them a broader perspective and makes them more open to a wider spectrum of disorders. This definition from Wikipedia explains why they are a good choice for separating MS from its many mimics:

http://en.wikipedia.org/wiki/Physical_medicine_and_rehabilitation

from Wikipedia:

Physical medicine and rehabilitation (PM&R) or physiatry (pronounced /fɨˈzaɪ.ətri/), or rehabilitation medicine, is a branch of medicine which aims to enhance and restore functional ability and quality of life to those with physical impairments or disabilities. A physician who has completed training in this field is referred to as a physiatrist or rehab medicine specialist ... Physiatrists specialize in restoring optimal function to people with injuries to the muscles, bones, tissues, and nervous system (such as stroke patients).


Good luck!
-
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby bluesky63 » Sun Apr 17, 2011 6:39 am

Hi there. I haven't been able to read your whole thread, but forgive me if this has already been suggested or pointed out. The differential diagnosis for vague neuro symptoms includes hundreds of possibilities.

Many people do not have a patient, compassionate medical team or home network supporting them so they do not get a thorough workup or thr right answers or treatment.

Many people who have a diagnosis of MS have been misdiagnosed.

The main reason to have any diagnosis at all is to have the right treatment and become healthy. As a brilliant person just told me, giving your symptoms a name is not what you need. It's like having a kid -- OK, now you've named it, the important thing is not the name, it's how you handle it and keep it healthy.

There are many things a person can do to become healthier *without* a medical diagnosis. Why wait?

Anyone who is having systemic symptoms should be tested for malabsorption, especially celiac disease, BEFORE they begin an alternative diet or supplements. Celiac disease and nutritional deficiencies can cause neuro symptoms and MRI lesions. Most claims of a cure include a gluten-free diet. I don't think it's a coincidence. The tests for celiac disease will not be accurate if you have already gone GF. Celiac affects as many as 1 in 100 people. The test is a very simple blood panel.

I am tired and am going to stop posting now. Best wishes. :-)
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