Still trying to figure out what's wrong

It's been almost 8 months since my lightheadedness and dizziness began and about 6 since the right side of my body began having a constant pins and needles, numbness, and even achiness. My right hand and foot are always cold now. My neurologists are at a loss since nothing has shown up on 3 different MRIs. They can't rule out MS because nothing else explains my symptoms. I'm really struggling to manage and am taking an anti inflammatory for "pain" and was prescribed a low dose of Gabapentin to take at night. My husband is convinced this is all in my head. Are there any other alternatives for relief naturally until they finally figure out what's wrong with me? Whether it be MS or something else. They told me it's not unusual for people to have symptoms long before anything shows up on the MRI. This cold weather is brutal for me. I'm so frustrated and so very tired.

6 Replies

  • Hi chrisfisk,

    I'm sorry you've had no answers yet. It took me 9 months and multiple doctors to get the right diagnosis. This is despite my test results, when I finally got them, being classic text book MS results. I had a neuro tell me it was transverse mylitis and would go away! Fortunately, I looked up TM and knew that wasn't it. I found amother more competent neuro that made the diagnosis.

    A doctor can't diagnose MS unless you meet specific criteria. I understand you want relief but you want the right relief. Many of the MS drugs are powerful and can cause problems if the disease is other than MS. The one I'm on can kill me so I wouldn't want anyone to take it that doesn't have MS or the one other disease it's prescribed for.

    There are multiple illnesses that can mimic some MS symptoms. Make sure your doctors rule these out. Not all are handled by a neurologist.

    Good luck!

  • Have you had a lumbar puncture (spinal tap) yet? My MRIs were inconclusive, too since I have only one brain lesion and one spinal lesion. Once I had the spinal tap, all doubts were erased. It was classic for MS.

  • Hello Chrisfisk, this is Fancy1959 welcoming you to this amazing chat room! You have found a safe place to come to ask questions, voice concerns, or simply talk to someone that truly understands what you are going through. There is always the options of seeking a second opion form a different neurologist. if that sounds interesting to you i've got a phone number for you. Call the Nationl MS Society at 1-800-FIGHTMS. They have regional offices throughout the US. They can recomend several neurologist in your area to contact for a second opinions. There is one specific test that can determine whether or not you have MS, a specific spinal tap. I understands that it is fool proof. In the mean time, pull up a post i had written several weeks ago. it is called, "MS and things to avoid". This might give you some helpful insight about MS while you are awating your diagnosis. We are only a post away if you need us. Please don't hesitate to contact us. Good luck with your diagnosis. Please rest as much as you can, avoid unnecassry stress, and generally take care of yourself. Fancy

  • chrisfisk From what I've read regarding the spinal tap a small percentage,5 to 10 percent of people with ms never show signs in their spinal fluid. Perhaps someday there will be a definitive test for ms, making diagnosis quicker and easier...

  • There are different strengths of MRI's or MRI machines. The ones that have lower strength may not show your MS lesions and they should do them with and without contrast.

    I was told that I only had 1 lesion for almost 40 years but now they are seeing more on stronger machines and think they may not all be new.

  • chrisfisk, I was diagnosed 9yrs after my first symptoms. Peripheral neuropathy, Lyme Disease, Lupus, etc were all ruled out. My MRIs we're still clear, but my LP (spinal tap) showed o-banding. All other possible (spinal fluid) infections/diseases were ruled out. So I was diagnosed based on what I didn't have, and my symptoms and LP.

    Two years later, when my neuro was out of town and my Avonex prescription came up for renewal, the head of neurology denied my prescription renewal and reversed my diagnosis. I can't say what is worse...waiting forever for a definite diagnosis, or getting one and having it reversed. (By the way, I was rediagnised at a MS Clinic and told I'd had it all along. My neuro who first diagnosed me got it right. 😉)

    I wish there was a quicker way to diagnose those of us who don't have multiple lesions on that first MRI. Mine took years to show up. I also wish there was a way to ease your frustration. I've been there and know how you feel. I'm praying you don't have MS. But if you do, I hope you get the answers you seek. 💕

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