HUSBAND IS IN LIMBO...TRYING TO FIND ANSWERS

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HUSBAND IS IN LIMBO...TRYING TO FIND ANSWERS

Postby AmyNick » Tue Jul 17, 2012 2:39 pm

I am trying to figure out what is going on with my husband. He was born with Neurofibromatosis 1 and now possible MS? In Feb 2012 he was really sick and after the sickness went away about 1 month later we noticed he started to have a little bit of a limp. He is 29 years old. After a few months went by his limp had gotten worse and in May i had to take him to the ER he had balance problems and his left leg is weak and wont function after activity and slight foot drop. He was originally diagnosed with MS he has brain lesions and positive LP. He was given steroids and it took away the balance problem almost overnight. I was concerned since the dr's did not have much knowledge of his NF that he has. I wanted a second oppinion. We went to chicago to see a Dr who knows about the NF and he has been working with a MS specialist who stated things are not adding up. It is leaning towards MS but there are things that dont make sense. He only has leg weakness and constipation. The balance problem is not there anymore. His brain lesions are starting to go away and only a few have edhanced and the time frame of the MRI's where only a 2 months apart. He has no new symtpoms, he feels just fine and the only thing bothering him is the leg weakness. He has not been on any medications since this and he can now make a fist with his foot, he couldnt before, and he can rotate his ankle a bit more. The Dr is leaning towards MS but it is rare to see in a patient with NF. It can happen but not very often. He is also concerned that there is no other symptoms like eye problems, or tingling, or numbess. just after activity his leg is not functioning correctly. They are also saying that the brain lesions are just not adding up either. They told us he does have a tumor in the pelvic area due to the NF that can contribute to some leg weakness but not all of the symptoms and it doesnt explaing the brain lesions. He does also have spinal lesions as well. Everything else keeps coming back negetive. I am scared and worried to death that something serious is going to happen to my husband. i am worried sick over this. Can anyone out there please let me know if you have ever dealt with MS this way? I cant keep thinking that he will end up in a wheelchair and we wont ever really know what is going on with him. i have searched everything and things just dont add up! Please can anyone help me?????
AmyNick
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Re: HUSBAND IS IN LIMBO...TRYING TO FIND ANSWERS

Postby Sparky10 » Wed Jul 18, 2012 2:56 pm

I'm not much help here, just support! :YMHUG: A hug and a shoulder for all you and hubby are going through. To answer one of your questions I've not heard of MS lesions going away. Normally they scar up; hence the name Sclerosis. Many Scars. Mighty Scary, for some people!

Has hubby had bloodwork to rule out MS mimics? A lot of diseases resemble MS in symptoms.

I hope you get some real answers soon so hubbs can get on the proper treatment!
Sparky10
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Joined: Sun Jul 08, 2012 5:02 pm
Location: Iowa!


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