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Old 01-12-2009, 12:31 PM   #1
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Unhappy MS / With no lesions / HELP

It all started in Oct. of 2006. I started with severe gait instability and electrical jolting sensations shooting through my head through to my fingers. Severe fatigue and pain in legs. This them subsided in about 6 to 8 months later, leaving stabbing pain in legs from time to time, and fatigue. Dr. could find no lesions, said probable ms, no deffinete (sp) diagnosis.
Then in early 2006, i had what the dr.'s state - optic nueritis. Got eye sight back, but left back lines and dots in eyes. Still no leisons.. from MRI.
Long story short, feeling no confidence in Dr.'s, they make me feel like I am a hyprochrondriac. Andi knowi am not.
I have dealt with severe itching / burning and wierd like peircing in my back, and neck. I was prescribed Atarax for hives. I do not have hives, just severe itching.
Now, i suffer from such severe fatique and depression that i am medicated for (for over 8 years now) that i can no longer function normally. I have three small children, and this makes life very difficult. I use to be so very energetic and now i can not get enough sleep to even function. It takes everything in me to get up in am to take kids to school.
I have chronic pain in my body. My knees hurt so bad, that i can barely get upa nd down the stairs. I get sharp shooting (like stabbing) pain in my thighs, calves, and upper arms. My hands fall asleep, so much that it wakes me in the night. I have uncontrollable jolting / jerking in my legs, exspeically at night. I am very clumsy now, i have fallen down stairs several times this months alone, like my legs just disapeared. I can not control my baldder and now I am experienceing swallowing problems to the point i will be eating fine, and tehn suddenly start choking on nothing, and start uncontrollable coughing. I have no insurance, and now i am getting a divorce becsue my husband staes he can no longer be with me, cause of no sex drive on my part.
I can not standone more rejection. My health records state that i have all the symptoms and signs of MS with no lesions. Please somebody give me a direction to go.

 
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Old 01-12-2009, 01:33 PM   #2
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Re: MS / With no lesions / HELP

Hi Micki, first off, welcome to our board...secondly, what kind of doctor are you seeing? It cannot possibly be a MS specialist- because he or she would know that you can definately have MS without lesions! You have all the symtoms of someone with MS, thats for sure...Im sorry that life is so difficult for you and that everything is hitting at once.
Its not that often that someone has MS without seeing the lesions on the MRI, however its very possible and it sounds like you might be one of those cases....you asked for help- my first and only suggestion is to get yourself in to see an MS specialist as soon as you can. The MS society can help you locate one in your area if you need help with names. If you are seeing a regular Neuro, maybe he can suggest someone? Although anyone who would have you on that much medication, without sending you to someone for a second opinion or at least doing additional testing (have you had a lumbar puncture or spinal tap?) has everything else been ruled out? Viatmin Deficiencies? Lyme? Lupus? Fibromyalgia? you really need to see another doctor and find out what is going on with you.. thats my only suggestion.
Let us know how you are...
and you can shout out here for recommendations for doctors in your neck of the woods if you like...
Nikki
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Old 01-12-2009, 02:14 PM   #3
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Re: MS / With no lesions / HELP

Yes i had a neurologist, three ofthem since 2002. And yes they have ruled out everything else. But now have no insurance, and no job and well. it is just hard right now. I am only 38 and i just want to feel normal, and have everyone stop harrassing me saying i am lazy, just depressed, get up and get motivated. Stop being so emotional... My three small children suffer so much. i hate this, and now it is real bad and i think the stress proabbaly is not helping..

 
Old 01-12-2009, 05:46 PM   #4
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Re: MS / With no lesions / HELP

nope, the stress isnt helping. Im 42, and was 39 when i was diagnosed....I get it. I also have 3 stepchildren who live with me...and a husband who DOESNT get it!
Heres the thing....no matter what, you have to have medical care. And a good MS Specialist might cost you, but its your health you are talking about and its only once a year, if things go well.....since you have already had the tests and ruled everything out, he or she would want to see those tests and make sure they agree with the results. Can I tell you how many times Ive had an MRI only to have the radiologist say its normal and my MS Specialist say its not? THere are things on there which a Neuro, or MS Neuro can pick up which a regular radiologist should see, but doesnt always...

also, the amount of drugs you are taking, that concerns me. It might very well be that the medication you are on, or the amount of it- is what is causing you to feel the way you are....depression is common with MS, but one doesnt have to be depressed. You need to do what makes you happy, see friends, or at the very least UNLOAD here. We get it! Really, there is nothing you can say here that someone wont identify with!

please consider calling the MS society in your area to get some referrals...they might be able to help.
and keep talking to us- ok?
Nikki
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RRMS- dx 05

 
Old 01-12-2009, 06:31 PM   #5
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Re: MS / With no lesions / HELP

Thank you. I looked up the ms society, and got a ms speacilist in my area. I will call him in the morning. I thank you, right now i am feeling at least like i am not going crazy and that there is a reason that i am feeling this way, not just lazyness. Which irrates me. No one in my life understands that i do not want to be this way....I want my life back, and do the things i use to be able to do, with out it wiping me out, with out using a cane, or with out the emotional hold of the depression on me. thank you for your support and suggestions.... Thank you so much, you made me feel not so alone....

 
Old 01-23-2009, 06:05 PM   #6
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Re: MS / With no lesions / HELP

After reading your post, I decided to register and reply.
I'm in similar circumstances. Three years ago I was making $50K/year at a career I loved. Now I'm going to food banks, and have to take breaks while folding laundry because my arms are so weak. I lost the company provided disability benefits because none of the many doctors I've seen would give me even a tentative diagnosis, other than my family dr who's known me for more than a decade, and knows I didn't just suddenly become lazy and stupid.
It started in the summer of 07, and my dr sent me in for an MRI. It didn't show any lesions but did show a Chiari I brain malformation and mild cervical stenosis. MS symptoms and those of the stenosis and malformation are VERY similar. The surgeon said the stenosis and malformation didn't qualify for surgery and sent me to a neuroligist to investigate other possible causes. In 07, the neurologist ran quite a few tests, but in the end just said my case needed to be monitored. I explained to both of them that I was REALLY worried about my job performance. I got sympathetic shrugs, and a large medical bill.
By the summer of 08, I was a mess; tremors were much worse, I could barely stay awake at my desk, and thought I was going to get fired. I've always been an overachiever so I was crushed. But the company CEO had an uncle that died from MS so when he heard about the medical problems I was having, and the fact that I tried to take care of it in 07, and got no help from the dr's, he was understanding. His uncle had the same kinds of problems. He told me that the company provided both long term and short term disability benefits for a reason, and that I needed to take it. I cried like a baby!! It's funny I've never been a crier, but the "new" me cries easy and can't stop!
So back to the MRI I went. Same results from the MRI, and the surgeon said once again, no surgery on the stenosis or malformation. The neurologist actually only examined me for about 2 min and then told me I needed to see a shrink. Once again, I cried like a baby. I started babbling about how my life was ruined, and he just gave me a very condenscending "Oh, it's not THAT bad!" Wow, the "old" me would have taken my money back, written a letter to the AMA, and used my "mother" voice to scold him for being incompetent. LOL
After crying for a couple of weeks, my husband convinced me to go to a different neurologist for a 2nd opinion. I didn't want to because I was afraid of being humiliated again, but I eventually did. At first it seemed like she was going to be great, her PA was anyway. But then she called the 1st neurologist to ask about some tests he did in 07, and when she came back in the room, she simply said she agreed with him. That was it, exam over. I was dumbfounded, and cried the entire 70 mile drive home.
Anyway, I lost the disability benefits, and now I'm getting unemployment, which is actually a fraud, because I have to say that I'm "able" to work, haha.
I'm very lucky because I have the support of my husband, my two grown daughters and my family dr. Unfortunately it doesn't seem like you have a good support network, but you can get one in places like this. Make calls to different agencies find the financial help you need to get back to the dr. It's out there. But I know how it is, sometimes picking up the phone and trying to think, is just too much, but if you're having a good day, or even a good five minutes, find a way to get yourself to a competent dr.
A week ago i was diagnosed with a staph infection from all the dang itching, and my dr decided to send me in for another MRI and I went in today (it's been 6 months since the last one) and my dr said if we don't get answers soon, he's going to send me to mayo (no clue how we'll afford that). But I already know that it'll be negative for lesions, and the mayo clinic will probably even tell me that there's nothing at all wrong with me, and that I was just wasting their time. But I'll go anyway, I have to....and so do you....because the alternative is to just give up.
So as you can see, I feel your pain, but most importantly the despair!!! You and me both would love to wake up tomorrow with our lives back, but it's not going to happen. In a better world the medical community would swoop in and fix us, but that's not going to happen either. What we need to do is be our own advocate. Information is our most important weapon. Did you know that the MRI is NOT supposed to be used to diagnois MS, it's only supposed to be used as a tool to support a clinical diagnosis by the neuroloigist. So if you're presenting with MS like symptoms, the lack of lesions doesn't rule MS out. There are other ways they can confirm or reject an MS diagnosis. They can do an LP, or Evoked Potentials, and things like that. But apparently it's a rare neurologist that will go to the trouble, or risk being wrong. It should not be up to us to tell them how to do their job, but our lives depend upon them doing so. If you go to your appointment armed with the knowledge of what he's supposed to do first, and then what he's supposed to do after that, and after that, you'll have the upper hand for a change.
Your children need you to fight for their mother!! When you lay down and rest instead of doing dishes, you're not being lazy or selfish, you're giving your body what it needs, and other than raising your children, taking care of you is the most important job you have right now, even if normally you aren't a "me me me" person, you have to be now. Also, I think you need to give your friends and family information on MS and how difficult it is to diagnois, and how disabling it is. And if they're not going to be there to support you, then they need to get out of your way, because you have a lot to do, and very little energy to do it.
I completely understand you fear of facing another dr that's going to make you feel ridiculous, I keep telling my family dr that I don't want to go to a neurologist, I just want him to handle it, but he says he can't, so now I have an appointment at Univ Of Neb Med center, neurology department, and once again I'm going to risk humiliation at a time in my life when I'm not strong enough to stand it. I know that if I start crying I wont stop, so I'm going to try to take a different strategy. I'm not going to wait for him to ask me about my symptoms, I'm not even going to let him tell me his "opinion" until AFTER I've told him mine. I'm going to have my facts ready, and let him know that I expect him to follow through on every possible test to bring about a definitive diagnosis based on current medical standards, and I'm not going to let him take the easy way out and just dismiss me.......then I'll probably run to the bathroom and cry like a baby!!!
Your children are small, and I know that they can be LOT of work, but they can also give you a LOT of strength. YOU ARE THE ONLY ONE WHO CAN SAVE THEIR MOTHER!! Use your maternal instincts to gather the strength to sort through the muck of medical indifference and get the treatment that you're entitled.
Sorry this was so long.

 
Old 02-04-2009, 07:17 AM   #7
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Re: MS / With no lesions / HELP

I feel your pain as well. I have ms symtoms without lesions and so far have only been diagnosed with neuropathy and I have given up on doctors as there aren't any good ones in Ft. Wayne, IN. Along with this so called neuropathy are tremors, fatigue, uncoordination, pins/needles, burning, itching, legs give out,....and my body/mind are just plain tired of trying. I can no longer work because of my health. At the very least, I would like to know what is wrong with me. So, if you find help somewhere; I would like to know where and who you found it with.
Jen

 
Old 04-19-2009, 03:12 PM   #8
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Re: MS / With no lesions / HELP

I am totally confused. I have a well known neurologist and he refuses to diagnose me with MS based on not having lesions on MRI's. I absolutely have all the symptoms you can imagine for MS. I have been getting really fed up because my other doctors put me down as MS, but my neurologist doesn't. I am being treated as a MS patient by my urologist for example. My condition has been getting worse within the past couple of months. My symptoms never really go away.

Anyway, this gives me something to consider.

 
Old 04-19-2009, 06:43 PM   #9
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Re: MS / With no lesions / HELP

Quote:
Originally Posted by dragonfly57 View Post
I am totally confused. I have a well known neurologist and he refuses to diagnose me with MS based on not having lesions on MRI's. I absolutely have all the symptoms you can imagine for MS. I have been getting really fed up because my other doctors put me down as MS, but my neurologist doesn't. I am being treated as a MS patient by my urologist for example. My condition has been getting worse within the past couple of months. My symptoms never really go away.

Anyway, this gives me something to consider.
Hi There:
You may be experiencing vasculitis, which can be a complication of countless auto-immune disease processes, Sjogren's Disease being mine. Vasculitis is a fancy way of saying, "inflammation of the blood vessels". If the blood vessels are in any way compromised, this may impede their ability to transport nutrients and waste products to and from our organs, tissues and nerves. This can mimic nerve dysfunction. In fact, it can be nearly impossible to tell it from nerve dysfunction--but, MRIs won't necessarily reveal vasculitis, particularly if it is occurring peripherally and not where the MRI is imaging. There are literally hundreds of auto-immune diseases, so you have quite a job ahead of you I'm sorry to say. I was originally diagnosed with MS even though I do have brain lesions on my MRIs, but that diagnosis was refuted later because my lesions are static, where as in MS, they are constantly shifting and re-locating. Best wishes and good luck in finding the help you need.

 
Old 04-26-2009, 04:32 AM   #10
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Re: MS / With no lesions / HELP

How do I find a MS Specialist through the MS Society? I don't see any links, etc.
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Only by the grace of God do I keep on going

 
Old 04-26-2009, 06:45 AM   #11
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Re: MS / With no lesions / HELP

Quote:
Originally Posted by dragonfly57 View Post
How do I find a MS Specialist through the MS Society? I don't see any links, etc.
Try calling them on the telephone. They might be able to help you that way. Either the MS Society or the MS Association should be able to help you.
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