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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

Newbie intro
Jan 27, 2007
Hello everyone. I'm in limbo with possible MS. I usually hang out on one of the larger MS boards, but I'm feeling a little overwhelmed by the pace of it all. I hope you don't mind if I jump in here. Here's a little background on my situation.

In the spring of 2003 I suddenly had extreme pain in both feet, besides the pain I also had a tingling sensation.

Spring 2004 Symptoms came back, only they were worse and had worked their way up to my waist. The acute attack lasted about 2 months, but I have never felt completely well since that time. I have had what I would call smaller attacks since then, in addition to everyday symptoms. Here are some of my other symptoms:

*Eye spasms which caused eye to shut completely, also have droopy eyelid
*Cognitive problems which were documented on two separate neuropsych evaluations (was told they could be consistent w/MS...memory problems, information processing, visual spatial problems, etc)
*Positive Rhomberg’s test, also reduced sensation identified from pinprick testing on both feet
*bladder problems...urodynamics testing shows retention, also have frequency
* bowel incontinence at least a half dozen times since last summer
*ENG showed CNS problem
*Nystagmus and vertigo (could possibly be due to an eye misalignment I was born with; however, it does come in go, and I never had any problem with it until last year)
*Heat sensitivity...increase in tingling, numbness after hot shower, being outside on a hot day, etc
*Buzzing, electrical sensation in neck
*Pain, weakness, tingling, stiffness in arms and legs
*OT testing showed problems with weakness in hands (left hand is hard to use at times)
*Reduced mobility...I cannot walk for very long w/out losing feeling in my feet, and having extreme pain in my feet and legs
*Fatigue, and tiredness

I have been unable to work for several years and applied for disability in Nov of 04. I was denied twice and am hoping to have my hearing before the ALJ in May of this year.

I have been to a half dozen neurologists. All of them have said it sounds like MS, but no one will dx, and most don't even seem to want to follow me. I went to a major MS center in the fall (mainly because I'd heard they advocated early dx and tx), and was told that because my MRI hadn’t changed in two years (I still just have four lesions), I couldn’t be dx’d with MS. That if I had gone there two years ago, I may have been started on treatment, but that they have realized they were treating many who didn’t need it.:confused: His plan was for me to have the neuropsych testing redone (I did, still showed problems), and urodynamics studies done (I did, they also showed problems, still need to go get the official results from urologist though). I was to return for a follow up, but it is seven hours from me, and not an easy trip to make.

I have done a lot of reading, and MS really does seem to be the only thing that fits. I have had all of the usual mimics ruled out. I’ve had all of the standard testing done, besides the four brain lesions, everything else seems to be normal. My only hope now is that the urologist said he knows one of the neurologists that I have seen, and that he would be willing to talk to him on my behalf depending on what the urological studies showed.

I guess I’m really looking for encouragement here. It will be three years since I started looking for answers, and I am getting progressively worse. I am lucky to have a PCP who seems to really care. I am afraid of what I will be like in three more years if I don't get started on some sort of treatment. I am taking a few meds for sx relief, but not enough.

Thanks for any insight, encouragement you can give. :)

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