I have had symptoms for years and just didn't realize that all of the symptoms combined could be something serious. I was told today that it looks as though I do have MS but have to be tested to rule out Lupus and Lyme Disease. I don't deal with waiting very well and am hoping to know something definite ASAP.
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Q: Im still in the diagnostic stage. How long does testing "typically" take before diagnosed?
Answers (3)
9/30/09 7:16pm
Hi Wendy,
I understand you are frustrated while waiting for a final MS diagnosis. Many of us have gone through the same thing; others continue to go through it.
MS is an individual condition. It looks and feels different on every person, doctors have their own feelings when dealing with it, and this leads to various diagnosis stories.
There is no defined time limit for the diagnosis to be complete. Most doctors rely on the revised next McDonald criteria. the criteria include a review of your medical history, at least two attacks at different times in different areas of your brain, and elimination of all of the many other conditions that mimic MS. Look at the diagnosis description offered by the National MS Society.
Please look around here on Health Central and you will find others living in limbo. Many of them are frustrated and tired of waiting. I know this is not the answer you were hoping for, but this is the reality of your MS introduction. It's not fair, but it is not fair. There are so many things that are so similar that doctors take more time rather than reaching a quick, incorrect conclusion.
I'm sorry for your frustration and the time it is taking. Most of us have been there, too. I hop it doesn't take too much longer before you get a definite decision whether you do or do not have MS. Good luck.
10/ 1/09 6:52am
I completely understand. It took years for me, but I was not agressiving, at first, about finding out what was wrong. I suspected it myself. The spinal tap was the last thing done and it took a couple of months to get the test results back from that. I was actually relieved in a way. Up until that point, I think the neurologist was just frustrated with me. I am doing better than most. I still walk, still work.
10/ 1/09 4:53pm
Wendy, I do not think that your husand and daugther are not supporatie. MS is new to them. The strong person that they knew and depended on, now is going to be the person that they are going to have to help. Such is my situation. For years I was the backbone of my family two daugthers and a husband. I took them everywhere, all school activities, and social activities, took care of home, worked in my church held offices, then all of a sudden along comes MS. Takes away the use of my legs. Brings on fatique that is unexplainable. My husband was with me when my doc first told me I had MS, I thought that he was going to pass out. I almost laughed at him, I had to catch myself. When my eyes crossed, and vertigo set in, and my balance left me, I knew then something was wrong. It just takes time for it to sink in, give them time, get on the web, on the MS sites, there are free books out there, they need to read them. It is not the end of your life, it is the stat of a new type of life. Now it will not always be easy, but hey, life is not easy.
Like the old spiritual goes, "trouble in my way, I got to cry sometime". Yes we do, wipe the tears away and keep going, that is what I do. I know that everything will be fine sherry/smomdukes
10/ 1/09 11:07pm
Thank you very much for the note. I went for my MRI this morning so now it's hurry up and wait! My daughter thinks I'm full of bologna and doesn't understand the seriousness of this whole situation and it's very frusterating. My husband just isn't saying a word, but that's his way of coping with difficult situations! I'm sure that there will need to be some renegotiating of chores etc!!! Any advice is welcome.
10/ 2/09 11:46am
Wendy, Yes it is a hurry up and wait thingie. But it will be fine. Your daughter and husband are coping the only way that they know how. So try to be understanding. I know that it does not seem fair, because you are the one who needs the support right now. Be strong, it will get better, I know it will I am there
Give them time and space that is what they need, and you are going to need it also, if you have MS. You are going to need some processing time, it will help you cope. But let me reassure you, it will be all right, it is not the end of the world, just an opening to a new world. You will find new strengths that you never knew you had, by that same token, you will experience weaknesses , but they will make you stronger. He puts no more on us than we can bear, I have always said, people with MS are some of the strongest people in the world, because MS is a mess, and a monster, but the fat lady has not sung, because we are all sitting on her...Smile sherry/smomdukes
10/ 2/09 12:39pm
All I can say is thank you! I will keep in touch as I find your words very encouraging!
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By Wendy— Last Modified: 12/26/10, First Published: 09/30/09
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Thank you so much for your encouraging note. I am so blessed to have an awesome doctor. Between my GP and Neurologist they were able to get me scheduled for my MRI immediately (tomorrow morning), which considering I have an HMO, that's a miracle! I will definitely visit this website often to read up on anything that I have questions about.
Right now the one thing I think I am struggling with is that my husband and 18 yr. old daughter are in denial (I think) and I'm not receiving any support. Do you know of any websites that are geared towards the family of people with MS? Something that is geared towards support and how to deal with the illness.