Feel like my life is over

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Feel like my life is over

Postby Tyr616 » Tue Nov 02, 2010 1:37 am

My disease is at a point where i feel like i just want to end it. Im 24 years old, and my symptoms have been constant for 2 years and are eolvivng into other things. My status right now, i have constant buzzing spasms etc all over rmy body. My right eye constantly hurts, i lost ALL sensation in my penis(By far the worse possible symptom) and my legs are becoming more stiff and painful. My bladder sensation is off and i have trouble understanding when to urinate. And it seems I have no clear signs of remitting EVER unless this is some how a 2 year attack that is getting worse before it gets better.

I feel like i have nothing left to keep me going. I lost my job, i feel terrible health wise, I lost my girlfriend of 4 years. Now i started living life again, i met another girl and we are starting to get close. However, what destroys me inside, is knowing i couldnt even have sex with her becuase of this disease, I have 0 sensation in my penis. It is so depressing and brutal i can barely take it.

I just feel like what the hell is the point. Im misreable, my symptoms aren't changing in a posiitve way, I have no job or money, everything i have or want is wasting away. For the men on this board, having 0 use of your penis is absoutely debilitating mentally, esp as single guy at 24 wanting to find love.

It's really hard for me to accept a "Normal" life is gone forever. I don't know how much longer I can take it :(. I have no idea where to start in getting a "life" again. My motivation for it is 0 because of my health. Feels hopeless.
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Postby Loriyas » Tue Nov 02, 2010 10:00 am

What meds are you currently taking? Is your physician aware of all of your symptoms? Also, depression and feeling overwhelmed is very common with MS. Talk with your doctor about it. There are things you can do to help.
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Postby Frank » Wed Nov 03, 2010 4:08 am

Hey Tyr,

I'm not aware of your MS course or your current/previous medications.
But as Loriyas pointed out, there are some possibilities out there that might be worth exploring.

There is some good data that people with aggressive RRMS had substantial improvements using strong immune-modulators/suppressors like Mitoxantrone, Campath, Cyclophosphamide or aSCT. Of course most of them are not part of the standard care, but if the burden of disease gets too hard for you to bear it may be worth serious considerations.

Also, alternative approaches like LDN and ABX might be worth a try.

Finally, the disputable field of CCSVI will certainly become a hot topic in MS research in the years to come - which is some good reason for hope in my eyes. And as "time is brain" one (as I also decided for myself) might want to get the procedure done ahead of definite (hopefully to come) scientific proof.

Especially at the young age of 24 its very important for your mental health that you are able to keep a encouraged/positive perspective in life - easier said than done, I do know that. Try to get all the help you can/need.

All the best
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Filmmaker » Wed Nov 03, 2010 9:09 am

Hey, do yourself a favor, go to a lyme literate doctor and get tested properly, you might actually have a serious bartonella co infection and it is treatable... I mean really 24 years old, you're only starting...
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Postby koopico » Thu Nov 04, 2010 9:33 am

Tyr,

I'm so sorry about how you're feeling, and I understand. But please don't give up! Do you still have health insurance? And are you seeing an MS specialist? If you do still have insurance, try to get a second opinion. And maybe a referral to a psychologist who deals with patients who have chronic health issues. Is there a family member or friend you could lean on, to help get you though? Maybe a different doc could figure out how to make some of your symptoms better.

Don't give up on yourself though, as bad as it seems. I wish I had the perfect advice for you....but there's gotta be a doc out there who will have some different suggestions for you, that will make a difference.

Let us know how you're doing, Tyr.
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Postby foreignlesion » Thu Nov 04, 2010 11:56 am

Tyr,

I understand much of what you're going through. I was undiagnosed at 28 and the issues I was having caused a break-up in a relationship with a girl I was ready to propose to. At the time I had penile hyper-sensitivity, bowel and bladder issues, fatigue, etc. Doctors told me it was chronic stress. I changed jobs to something less stressful and started seeing a new girl. I fell in love and was engaged at 30. I thought things were going well, but as the hyper-sensitivity wore off, I started to lose feeling as well. By the time I was married at 32, I frequently didn't orgasm and all other symptoms were becoming more frequent and progressing. Within three months of my wedding, I had severe sensitivity issues from the rib cage down, which finally led to a neurologist referral and a diagnosis.

I have to say that the first year of marriage was extremely difficult. Fearing the loss of my career, my sex-life and my marriage was extremely stressful and depressing. I am now 34. I have zero feeling in my penis, extreme fatigue, severe bladder issues and progressing mobility problems, but my wife and I are coping with everything quite well. Viagra works extremely well for maintaining an erection, although I rarely achieve orgasm. It took almost a year for my wife to come to terms with the fact that this had nothing to do with her and that sex was still enjoyable and necessary for me.

We see a psychologist once a month that helps us with the necessary lifestyle changes involved with chronic illness. I am actively exploring career opportunities that are more cohesive to life with MS, although nothing has come to fruition yet. Things are definitely becoming easier, less stressful and I am starting to see life in a more positive light.

Some words of advice:

#1
Find someone to talk to! This is very important. Chronic illness can be a very lonely place that the majority of people are unable to understand. The depression that this causes can be life threatening, but know that you are not alone and MS is not everything you are. Places to find someone to talk to include your local MS Society, a Psychiatrist, Psychologist or counsellor, a priest or minister, medical forums like here at TIMS, or if you'd like, you can PM me and I will do whatever I can to help.

#2
Continue to work. Most people who stop working early progress at a much faster rate. I don't know what your job was, but there are labour laws that protect many people from wrongful dismissal due to disability if your employer is able to accomodate you accordingly. You are also young enough to find another career path that is more MS friendly if that is what is necessary.

#3
Be open and honest about your condition in your relationships. MS is hard enough to understand when you have it. It's even harder to understand it when you don't. It's up to you to help those in your life have a better understanding.

#4
Accept that some people just won't understand. Not every relationship works, regardless of whether or not you have MS. There are always issues in any relationship, and finding someone who accepts you for who you are isn't easy for anyone.

Please re-read #1. I can't stress this enough for you right now. Seek help and know that you are not alone and your life has value.
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Postby silverbirch » Sun Nov 07, 2010 10:43 am

TYR616 wheelchair kamikaze is a site that is familuar to alot in the forum his latest blog is interesting

link to webb --http://www.wheelchairkamikaze.com/

Scroll down to and click on that link you may find it informative

------On an interesting side note, Gilenya is derived from an ancient Chinese herbal remedy called Cordyceps, which is a fungus that grows on the back of caterpillars, and is purported to have many medicinal properties, including those of an aphrodisiac. It's also supposed to increase blood flow and oxygen supplies throughout the body (possible CCSVI implications?) (click here for info)

Mark aka wheechair kamikaze has a fantastic outlook full of lots of information from a man that is an inspiration to us all

Chin up me auld mate xxxx the forum is full of wounderful human beings that I have never met the like of in my life
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Postby surfbird » Tue Nov 09, 2010 11:08 am

Tyr616, I am so sorry to read your post. I wish I had a perfect answer for you, but all I can do is tell you that you're not alone and there is hope. there is ALWAYS hope. please don't give up

I don't want to repeat too much of what the others have said, but they are right on in all they've said. if doctors are available to you, there is definitely one who can help you. There are also doctors with big hearts who may help you even if you don't have insurance. PM me if you want to brainstorm ideas about how to find them. I'm in marketing and love helping people - maybe we can figure out a way to reach the right doctors who will help you pro-bono if necessary. I think looking into a lyme literate doctor or CCSVI sound like good ideas, and you could qualify for a grant or assistance if money is an obstacle.

If you can find a psychologist who specializes in coping with chronic illness, see them. I did and she is amazing - I had no idea such a doctor even existed. She has helped me so much and I look forward to my weekly visits with her. Confide in your friends, family, anyone you can - what about an MS support group in your area? Having people to lean on is key, even when you don't want to be weak. It's always hard to for me to ask for help but MS has taught me that people love to give it when they can.

I can't imagine what it's like in regards to the sexual dysfunction. But I can tell you that using your penis isn't the only way to please a woman and you can learn how to make sex fun for the both of you, even if the numbness continues. Obviously it would be best if you can feel everything too, but being able to please your partner would be one thing you could cross off your worry list.

Finally, in regards to a job - there are lots of career paths out there to explore. Employers can't discriminate against you because of a disability, so you're protected there. And if you are too fatigued to work full time, or even part time, what about looking for some volunteer opportunities? This might sound dumb, but it could help restore your hope if you know you are making a positive difference somewhere. Plus, you may be able to expand your network of friends and find people to help you become happier.

please, please, please don't give up on yourself. there is hope. it just might involve a lot of research and patience. and i mean it when i say to PM me if you want to talk about ideas or anything. i don't know if i can help but i would be very happy to try.

sending you a big hug.
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Postby elliberato » Wed Nov 17, 2010 11:16 am

Hang in there brother. This sucks. I am in the same boat. 4 yrs and im in a wheelchair. From the sports field to the wheelchair. Its hell. im in constant pain. But giving up is not an option. You have got to hang in there. There are too many stories of people who spontaneously get better. The neuro wont do shit for you. You make it happen. You know more about what you feel then they ever will.
try ldn
try a holistic dr
try a homeopath
try b12 shots
try an intuitive medicine guy
try any fucking thing that might help
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