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Seem to have MS but am in limbo


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Old 10-07-2010, 07:43 PM   #1
Mark2010
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Seem to have MS but am in limbo

Hi everyone,

I have read online how hard it is to diagnose MS even for those with insurance and I have no insurance. I have had symptoms for about six years now getting worse each year and do not seem to have remissions but going by the symptom checker of MS, I have more than 90% of the symptoms and the neurological exam diagnoses stated demyelinating disease with possible MS. Many of the exam tests by the doctor were positive but one MRI of my back came back negative and now I have no money to move onto the brain MRI and I even read some people can test negative on scans and other tests and be going downhill with MS at the same time.

Does anyone here with MS that had a hard time getting a diagnosis have any suggestion of what I can do? I have never been a person to wet the bed even as a child and have now lost full bladder control in my sleep and have to wear diapers but I even flood out through those some nights which is humiliating. I am having so much trouble seeing green stop lights when it is daytime because at a distance it is difficult to know if they are out or on until I am right up on them. I get episodes of total exhaustion unexpectedly and have to get to bed right away, getting terrible spasms in my feet and legs that I cannot control severe pain throughout most of my body everyday with other symptoms. Iím so frustrated being in limbo not knowing 100% if this is MS or not and do not know what to do.

Thanks,

Mark

 
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Old 10-07-2010, 08:42 PM   #2
MSJayhawk
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Re: Seem to have MS but am in limbo

Welcome.

The MS Association has grants for getting an MRI.

I had one episode of a bed wetting. It is not fun. I have found that I need to cut off my water consumption 2-3 hours before bed. This allows me to have plenty of time to empty my bladder. Even then, I may have to get up at night, but about 90% of the time, I can enjoy a good night's sleep- uninterrupted. I have a supply of adult diapers in the closet, but I have never used them. I also sleep on a waterproof sheet- just in case.

As to the vision, I have difficulty seeing without my sunglasses. They have helped me greatly.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 10-07-2010, 09:54 PM   #3
Mark2010
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Re: Seem to have MS but am in limbo

WOW, I didn't know about the grants. How does that work? I will look it up.

Do MRI's give a firm diagnosis or are they sometimes negative? I've only had one in my lifetime and it was done on my back to check for MS but did not show MS. They want to do the brain now and I think they should have started there but I have no money to pay for another one. I'm about to lose my house as it is now.

I tried cutting back on liquids an hour before bed and when that didn't work I went to three hours but it seems like in daytime when I have to go I have to get to restroom real fast. At night it started over a year ago suddenly and was about three nights a week and now it can be almost every night. A dry night is rare but does happen two or three times a month. Unfortunately whatever I do, I still end up with trouble in sleep and what is even worse than wetting myself is I can be woken out of a sound sleep in severe pain with leg spasms which are almost like a charley horse but the cramping will contort my foot/feet and legs in such a way that makes it hard to stand up but I do get up and try to walk to get rid of it and that does not help. Once they start they go on for an hour-four hours and there goes sleep out the window. I take Lyrica and klonopin for them and it seems to help prevent them a little but was told there is a much less expensive med that works as well if I can just get my doctor to at least try it on me.

I'm so happy for you that you are med free. I believe in God and if it were not for my faith, I would have given up already. I hope you stay well and feeling well. Thanks for your post. Having people to talk to I think helps the anxiety from all this not knowing. I donít want to drive my family crazy or complain about health problems all the time when nothing can be done at this point anyway. Why make everyone else miserable is how I look at it.

Mark

 
Old 10-08-2010, 07:40 AM   #4
MSJayhawk
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Re: Seem to have MS but am in limbo

Quote:
Originally Posted by Mark2010 View Post
WOW, I didn't know about the grants. How does that work? I will look it up.

Do MRI's give a firm diagnosis or are they sometimes negative? I've only had one in my lifetime and it was done on my back to check for MS but did not show MS. They want to do the brain now and I think they should have started there but I have no money to pay for another one. I'm about to lose my house as it is now.

I tried cutting back on liquids an hour before bed and when that didn't work I went to three hours but it seems like in daytime when I have to go I have to get to restroom real fast. At night it started over a year ago suddenly and was about three nights a week and now it can be almost every night. A dry night is rare but does happen two or three times a month. Unfortunately whatever I do, I still end up with trouble in sleep and what is even worse than wetting myself is I can be woken out of a sound sleep in severe pain with leg spasms which are almost like a charley horse but the cramping will contort my foot/feet and legs in such a way that makes it hard to stand up but I do get up and try to walk to get rid of it and that does not help. Once they start they go on for an hour-four hours and there goes sleep out the window. I take Lyrica and klonopin for them and it seems to help prevent them a little but was told there is a much less expensive med that works as well if I can just get my doctor to at least try it on me.

I'm so happy for you that you are med free. I believe in God and if it were not for my faith, I would have given up already. I hope you stay well and feeling well. Thanks for your post. Having people to talk to I think helps the anxiety from all this not knowing. I donít want to drive my family crazy or complain about health problems all the time when nothing can be done at this point anyway. Why make everyone else miserable is how I look at it.

Mark
You can talk to the main office for the MS Association. You might also check with the MS Society. You might look at your state health department for financial assistance.

I have, on occasion, had sleep interrupted by leg cramps and I know that when the leg is contorted it is both painful and difficult to get up. Stretching has helped alleviate much of my cramping episodes, but they will still occur. I would start with stretching several times a day and before bedtime.

It is indeed difficult to deal with a bladder problem. For me I will get bladder and bowel problems both when I am heading into a worsening situation. These, for me, are triggers that something is amiss. I increase my rest and spend more quiet time to quiet my life. This works for me. I have never had difficulty in going.

MRIs are not a final tool for MS diagnosis. A good MS specialist will run an MRI with and without contrast of your head and cervical spine. If the result is negative for lesions, another MRI follows in 2-6 months (no standard rule). Read about the McDonald Criteria. This will help guide your process.

I do not like to burden my family with daily details. When there is a "big event", I let them know (like my eyes going bad or my legs stop working). I try to remain a functioning part of my family, but I have learned to delegate somethings because I cannot do it or it would endanger myself or others. I walk by faith each day and count my blessings. Our time on earth inhabiting our earthly vessel is short indeed. I look past the pain and problems and keep my eye on my eternal inheritance. You are in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 10-10-2010, 01:07 AM   #5
Mark2010
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Re: Seem to have MS but am in limbo

Quote:
Originally Posted by MSJayhawk View Post
You can talk to the main office for the MS Association. You might also check with the MS Society. You might look at your state health department for financial assistance.

I have, on occasion, had sleep interrupted by leg cramps and I know that when the leg is contorted it is both painful and difficult to get up. Stretching has helped alleviate much of my cramping episodes, but they will still occur. I would start with stretching several times a day and before bedtime.

It is indeed difficult to deal with a bladder problem. For me I will get bladder and bowel problems both when I am heading into a worsening situation. These, for me, are triggers that something is amiss. I increase my rest and spend more quiet time to quiet my life. This works for me. I have never had difficulty in going.

MRIs are not a final tool for MS diagnosis. A good MS specialist will run an MRI with and without contrast of your head and cervical spine. If the result is negative for lesions, another MRI follows in 2-6 months (no standard rule). Read about the McDonald Criteria. This will help guide your process.

I do not like to burden my family with daily details. When there is a "big event", I let them know (like my eyes going bad or my legs stop working). I try to remain a functioning part of my family, but I have learned to delegate somethings because I cannot do it or it would endanger myself or others. I walk by faith each day and count my blessings. Our time on earth inhabiting our earthly vessel is short indeed. I look past the pain and problems and keep my eye on my eternal inheritance. You are in my prayers.

Thanks so much for the information and telling me about your symptoms some of which sound like mine. That you for keeping me in your prayers too. Please know you are in my prayers as are all other people here suffering illness.

God bless,

Mark

 
Old 10-10-2010, 01:23 PM   #6
Kasey443
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Re: Seem to have MS but am in limbo

Hi Mark, MSjayhawk is a godsend and huge help here. I am also in limbo and came here for help. I spent a month and a half in a wheelchair, graduated to a walker, then a cane, had numerous internal vibrations, was completely exausted, facial numbness, tingling, leg numbness, tingling, had MRI's with contrast of my head, neck and spine, and they found nothing. I know how terribly frustrating it can be. My symptoms are much better, but not completely gone. I go back to mayo clinic next month to the spine clinic, it will have been 6 months since my episode. He wants to recheck a bone spur in my neck, but I think he wants to check all of me out and used that as an excuse. Ms was never mentioned to me, but I had numerous people ask me if I had been checked for it, and I was shocked at the amt. of symptoms I had. I believe there was only one or 2 I did not have, an eye problem, and bladder problem. I was checked for lyme disease, and now am reading that many lyme tests come out a false negative. I am going to talk to the doc about the symptoms I still have next month. I also found out they have 5 MS docs at mayo, and I didn't see one! I saw a neuro. and the spine specialist. Then when I read the report from one doc here, I was very disheartened to see that she actually questioned weather or not I could really use my legs. It really upset me to think I would have nothing better to do than to make it all up. I couldn't even come up with all the things I had going on at that time, let alone fake it. I found out many people go through this also, if they find no lesions, you must be ok or it's all in your head. I have been living with leg cramps mostly at night for over 3 years also. Mine are in my calves. I can be fine, then lay down to go to bed, and they just start cramping so bad, I have to get up. I have had numerous tests on them, nobody seems to know what is causing it, one doc claimed it was from the arthritis in my low back. Yet my calf muscles are what stopped working one day out of the blue within seconds. I could not walk without holding onto the walls and counters, and I could not move my feet at all, so I wonder if the cramping and this are related. I hope you can get an MRI of your head to atleast maybe get some answers. I know how frustrating it is to be in limbo. Good luck to you and keep posting.

 
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