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Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 8/10/2009 6:18 PM (GMT -7)   
Ok. I hesitate to even post right now. Warning: Lots of venting about to occur. shakehead

I just can't get it together. I am falling apart. I'm a mess. I can barely function. I am only 29 years old for crying out loud. I am so out of mind frustrated and tired and weak. Errrrrrrr

I've been to doctor after doctor. My PCP keeps forcing depression down my throat. I know I am not just depressed. I don't doubt that I am depressed though. Who wouldn't be feeling like this.

No tests are coming up with anything except a positive ANA. I am getting an MRI Wednesday and also being tested for Lyme disease. Part of me wants one of them to come up with something because I'm so tired of feeling like this and I just need to know that I'm not crazy and I need my family to know that too. My husband doesn't even believe that I'm sick. He thinks it is all in my head. Argh.

Along with overwhelming fatigue, I have pains that come and go in my legs, arms, neck, shoulders. I have tingling all over, but mostly in hands and feet. I have tension headaches, an ongoing sore throat that is mostly one sided that makes it hard to swallow. It comes and goes, but mostly comes. It doesn't hurt that bad and is more annoying than anything. My arms and legs are very week. I can't concentrate anymore. I have almost no short term memory. I lose little chunks of time. I am constantly dropping things. I feel like I have a good grip and the next thing I know, crash another glass is broken. Ayeee. I never feel rested no matter how much sleep I get. My husband got up with the boys today and I slept til 11 and I still didn't feel refreshed and I was ready for a nap by 2. My eyes twitch every now and then too involuntary. My entire body feels achy all the time, even my hair hurts. I cannot handle noise for anything. Sometimes it feels like a full time job just to keep my head up. Yesterday, I was sitting in my car and I felt like my car was moving backwards and I kept hitting the brakes. And, then just as quick as it started, it was over and I realized I was sitting there in my unmoving parked car. It was scary. I feel like when I'm grocery shopping that people are coming straight at me with their carts. I jump a lot and then I realize that they aren't even close to hitting me. Lately, I get shocked a lot too. It's weird. I feel like I have energy just racing through my hands. Pushing grocery carts is a nightmare. The tingling makes me crazy.

This is all just getting too much. I've already broke down and cried twice today. My marriage is falling apart. I am starting to hate him because he doesn't believe me. I absolutely hate feeling this bad, but hate not having my husband support me even worse. He's always making comments and with every stupid test that comes back okay, he smirks all that much more. This is just too too much. If I didn't have two little boys, I would run off and live in a little cabin in the middle of nowhere. cry

Post Edited (Debbie Downer) : 8/10/2009 7:25:13 PM (GMT-6)


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 8/10/2009 8:16 PM (GMT -7)   
Debbie,
 
Try to hang in there.  This is a rough road, but you are not the first to travel it.  I am 30 years old and was just diagnosed with MS a few months ago, after four years of doctor-hopping and being told it was probably stress.  Eventually you will figure out what is going on, and then you can focus on getting treatment and making adjustments to compensate.
 
Be patient with your husband.  Believe it or not, what you are going through can also be very hard on him.  My husband wavered at times during the diagnostic process, but now that I have a firm diagnosis he is quickly becoming my staunchest supporter.  It is difficult for him to understand the things that are happening to you, but that he can't always see evidence of (such as the fatigue).  Remember also that he is the one picking up the slack when you are down, which adds to his stress level. 
 
I hope your doctors are able to figure out what is wrong with you quickly.  Until then, just take it one step at a time, and try to remember that your family loves you and needs you.
 
P.S. Have you thought about replacing your PCP? 

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/12/2009 12:47 AM (GMT -7)   
Debbie,

Just try to cut yourself some slack it is really difficult for everyone in the family. I diagnosed myself (I had a lot of clients with MS so it looked pretty likely) and then went doctor hopping and got all sorts of wierd dxs until I returned to my GP and told her that I thought it was MS & she agreed it could be & sent me to a neuro.

He did not think it was, subjected me to all sorts of tests before I finally got a MRI that gave me an answer.

Get this I DID NOT have the courage to tell anyone for 7 years! I thought my husband would run and I wanted the kids to get older. But in hindsight I think those seven years gave him time to adjust & 15 years on from my dx with SPMS he is still there & most supportive & the kids have finished uni and flown the nest.

Hang in there. Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


Mamacita
New Member


Date Joined Aug 2009
Total Posts : 6
   Posted 8/17/2009 8:11 AM (GMT -7)   
I totally agree with the other posters...hang in there. You'll figure it out and be OK.
 
I'm a little reluctant to say this next thing because you're in a tight spot right now. But I know it would help me, so I'm going to risk it...
 
Getting an official diagnosis won't necessarily make any of that stuff go away.
 
Maybe your husband would be more supportive if you had an official diagnosis. But plenty of people with an MS diagnosis still have a hard time communicating their fatigue or weakness or whatever to their spouses. So whether this is real (MS or something else) or whether it's all in your head (which is a running joke with me and my husband, who has MS, because in a way it IS all in his head--or at least in his head and spine..hehe), you and your husband will still have to find a way to communicate and get on the same page. Even without a diagnosis, you and your husband can set some ground rules for how you'll interact with each other.  Even though you know what's breeding tension between you, a regular trip to a marriage counselor might help you both clear the air in a helpful way, too. (I always hate when I'm struggling with something and someone recommends counseling to me...ARGH!...so I'm sorry! But I really do think it might help.)
 
As for all the symptoms, there are lots of ideas on these forums on how to compensate for symptoms as much as possible. Sometimes, folks just have to learn to live with a symptom, but sometimes there are things you can do to help.
 
My husband and I are big believers in the MS diet connection now, so I can never post anywhere without mentioning it (more apologies...I'm a proslytiser for the Best Bet Diet. I can't help myself). But there are a lot of MS diets out there, and none that I know of are actually dangerous in any way. So it's just the inconvenience of the food restrictions, which it seems would be worth it if it might help with the myriad symptoms you're struggling with or with your marriage issues. At the very least, you could consider Vit. D supplements, b12, and a gluten-free diet. Those three things seem to be huge for a lot of people with MS. Anyway, it's something that you can do entirely on your own, without a diagnosis. It took about 6 months for my husband to really get into the groove with the diet, so it's a commitment. But it has been well worth it for us. We've been on the diet for a couple of years now.
 
Anyway, whenever I'm feeling overwhelmed, frustrated, or helpless, it always helps if I can identify some step that I can take to try to make my life better, however tiny.
 
Good luck!
Mamacita
 
 

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/17/2009 6:09 PM (GMT -7)   
Hi Mamacita,

I wanted to say that I agree with you that, for me, diet has always been a huge help. I would definitely give it credit for getting rid of that awful fatigue (though I have no proof of course). Also lots of fish oil which definitely got rid of blurry vision also I found I was hugely allergic to fluoride (which is meant to be very bad for people with MS) & once I desensed to it at least I could go out to eat. Fried food is a definite no no!

Recently, I read this " Diet and Recovery from Chronic Disease" on the internet and there were some interesting comments he made that resonate for me. He said that everyone is different & that what works for one person does not necessarily work for another. He says you may spend time on one diet that is very helpful and then need to find another.
I have spent years on swank type diet but recently changed to a gluten free, legume & night shade free nutritional type which for me has meant more lean organic meat (organic chicken & kangaroo). And I seem to be really good on this (for now?)


:-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.

"The past is history, the future is a mystery, the present is a gift."


shane12
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/19/2009 6:52 PM (GMT -7)   
I don't know if this will help or is a possibility, but while I was at the Doc's office I noticed a flier for an MS support group that met once a month in my area. With any luck there may be one in your area that you could visit.

Even if you haven't been diagnosed I'm pretty sure any half-decent group would be willing to take you in, listen and offer advice they have. For me at least just saying the stuff out loud to someone helps a lot. Might be worth looking into.

Sunshine27
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 8/21/2009 12:08 PM (GMT -7)   
Debbie,

Just recently I stumbled over an article on MS and diet by Joel Ullisperger. He says that there was a German physician who had successfully helped 12,000 MS patients with a diet treatment. The article is on ezinearticles.com. Search for his name.

Maybe this is something that helps you.

Emmy

Post Edited (Sunshine27) : 8/21/2009 1:15:17 PM (GMT-6)

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