I finally heard from my nuero's office and was told my lumbar puncture came back normal! I'm happy but I'm wondering if a negative LP but still having a positive mri rules out ms. My blood work and tests for lyme Ra and all those MS mimics came back normal as well . I don't know how my evoked potentials came out or the eeg .I'll have to wait to speak to him. I was hoping for some answers for the pain dizziness and other symptoms I've been having. They did give me an appoint to discuss all this and I'm wondering with all the experience you all have what's the best way to prepare for this appointment to get the most out of it? Are there medications for this dizziness and fatigue and will this doctor prescribe it if I have no diagnosis. I almost feel like I'm done fighting for myself I am just too tired. It seems like my life the way it was is slowly being taken away from me and I am too tired to bother getting it back.
I'd be happy too. In fact, at this stage, I'd be happy if they did all those tests on me, just so I'd know they're trying to identify it.
In the Health Pages section here, there's one page that talks about the MacDonald Critereia. This is the set of rules that is used to decide when a patient has MS. I don't know how these rules are applied, disseminated, or administered, but there is a set of rules that are supposed to tell a doc what combination of symptoms and test results support the diagnosis. I doubt if the neuro I dumped today has ever heard of them, but I hope they give you some understanding.
I hope I get some understanding and I hope you get it too. Everyone needs to have a medical professional who truly wants to help them.
When I had my lumbar puncture and I was told to lay flat in the recovery room for a an hour or so a funny thing happened,,,My pcp from 9 years ago walked right by me, He was visiting his patient next to me. I recognized his voice right off the bat and it reminded me of the countless times at least once every 2 months that I showed up at his office unable to turn my head or move my right arm.. How each time that happened I was unable to work for three days (I unloaded trucks at the time and I was in great shape and enjoyed my job and the people i worked with a great deal) How my arm would become so weak that I couldn't pick up a gallon of milk.(that would last for months) I'd get muscle relaxers and be sent on my way. How I went to him when I was 34 and asked why do my knees hurt so much. Why when I sit down do I look like a ninety year old women when I try to get up . I told him I was in pain and he told me I was depressed. I thought while he was talking to his patient if had paid attention Just looked into it further I might not be here right now. What if i missed that window where the medicines could have helped me what if I had progressive MS now and I cant go back. I felt like crying, I tried other doctors I was treated for tennis elbow, Bulging disc,, tendinosis etc. But when I said my legs hurt they feel heavy My latest pcp said well maybe in a few months you come back and I'll send you for an x ray. I spent three months first unable to control my arm and when i did regain movement I had pins and needles in my fingers for at least six months. I was told I hurt myself at work I don't remember hurting myself at all I just remember i suddenly couldn't control my arm. And again I felt that there was really something wrong and again I felt doctors where telling me that they knew more about my body than I did. Then this seizure or small stroke That caused to get the mri (positive)and maybe a diagnosis . But now I think like others here I'm going to be in limboland. I've been doing this for 9 years now so I guess I go a little longer. (and now I might go for the anti depressants just in case I am depressed and don't know it)
I do hope for you and everyone here that they all find the right doctor and the right diagnosis . Thanks for info and take care
My neuro told me that a positive LP would indicate MS, but a negative LP cannot rule out MS. He said that since I have a very positive neuro test and a positive MRI the LP is being done as extra information. I just had it done yesterday so I will probably not hear the results for a couple of weeks from what I understand.
I am back to waiting!
I was given a dx of MS after being diagnosed with ON and given an mri. The dr said that to confirm the dx I needed to have an lp done. When that came back negative for o bands, he told me that it is only positive around 75% of the time for ms patients, but that I do not have ms. I was still trying to figure that one out when I was just told that I've had my lesions (all 20 of them) since birth. Go figure?
I was told LP is not positive in all cases of MS. If you meet the other criteria then you can be diagnosed and treated.
Pasor Dan what are they treating you for? Do you get some pain relief at least? Dr's frustrate me more than the disease most of the time.
Everyone feels that way sometimes chinacat65. And boy if we are female it seems we are treated even more poorly- many have thier symptoms put down to depression or menopause or something. One thing I have learned -any fight worth fighting is never easy. The last 3 years have tested every ounce of strength and faith I have. Sometimes I can't wait just to wake up the next day as tomorrow is always different thank goodness. Not always with the pain or suffering but it is almost that rest gives our brain that little bit of optimism we need to take another breath.
prayers and peace to you all
Carolyn, that's a big part of the problem: they're not treating me. The lousy neuro to whom I was referred gave me Depakote for one episode of migraine. The migraine went away, but very possibly on its own. Meanwhile, he wanted me to stop all the meds my PCP had tried, saying that they would keep my brain from adapting to its new circumstances. I'm hoping that the MS center into which I'm trying to get will find SOMETHING that I can put a name on and perhaps even fight back.
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