Hi Everyone! I've been kind of losing my mind and so I decided to come here to get advice/help from those of you who have gone through the diagnosis of MS. Sorry, this will be a long post but I want to give enough information for you to go by. I have not yet been officially diagnosed with MS but I started having symptoms about 5 and a half years ago. It started with numbness/weakness in my left arm that would kind of come and go. It didn't bother me enough to do anything about it so I didn't go to the doctor.
A few years later I had several days where I was dizzy and lightheaded, extremely tired (even after a good night of sleep) and my left arm and leg were bothering me more. It became problematic enough that I went to see the doctor but nothing really came of it. I was supposed to follow up but by then my symptoms had subsided so I didn't bother going back.
Another year passed with intermittent issues, particulary with my left arm and leg, until I came down with the flu. It took me out for 2 weeks during which time my left arm and leg were very weak/numb and uncomfortable. It wasn't painful just extremely uncomfortable. I finally went back to the dr and since the left arm and leg were my main issues things started to get more focused. I was sent to a neuro to do a nerve conduction to see if there was a pinched nerve. Blood work was done to check for the usual culprits (lyme disease, vitamin deficiencies, lupus etc) and finally an MRI of my brain and cervical spine which turned out to be clear. I was relieved until the doctor told me this did not rule out MS but that we would just keep an eye on things before going on to more invasive tests since once again my symptoms were improving.
I was pregnant shortly after this visit and so I didn't really notice these issues, perhaps because they weren't as prominent or perhaps because I was distracted with the misery associated with being pregnant. It wasn't until a few months after I had my baby that I started having issues again. I ended up having a bad bout of vertigo. My arm and leg were pretty much constantly feeling week and numb although not always at a high degree. And then the thing that sent me back to the doctor again was my left eye started twitching everyday, multiple times a day for a month and a half straight.
At this point my doctor did another round of bloodwork testing for everything under the sun and when that lead nowhere she sent me off to a neurologist that specializes in MS (and is apparently very saught after). While waiting the 4 months to get in I started to have more days with fatigue so bad it was hard to do simple tasks. The MS neurologist did a physical exam and I learned the my left arm and leg were weaker than I had realized (my left arm was sore for 2 days after). He sent me in for another MRI since it had been almost 2 years since my last one and it was clear. Next a lumbar puncture (just one band so also clear), then finally a steroid infusion to see if that improved things. The steroids made things much worse for a couple of weeks (for the first time I noticed that the left side of my face was also mildly numb) and I was extremely tired. At my follow up the neuro noticed an improvement in my strength on my left side but since none of the tests were conclusive for a diagnosis he said to follow up again in 6 months if things were not improving.
I was back 6 months later as my arm and leg were still bothering me and my fatigue had gotten much more frequent. The Neuro decided to do another MRI, this time with contrast since we hadn't the first time because I was still nursing. He talked about starting me on MS medications which I was surprised by since we didn't have the results of the MRI. When I asked if they would help with the fatigue (since that was my most debilitating symptom, especially with kids) he offered up Provigil instead since it is cheaper and more directly for fatigue. His office called to tell me the MRI was clear but told me nothing else. And that is where I am now. I have been taking the Provigil but I am still struggling with fatigue. My arm and leg are still bothering me and I started getting a twitch on my left knee. I am at a loss of what to do. I am not really comfortable starting MS medications without knowing for sure that is what I have but the doctors don't seem to have any other ideas of what could be going on.
I guess what I'd like to know is whether this story seems familiar to anyone? The neuro said that people can still have MS even with a clear MRI although it is rare. Has anyone here been diagnosed with a negative LP and a negative MRI? If so, how long was it before lesions began to show? Should I ask for an evoked potentials test? I'm not sure why we haven't done one, maybe because I haven't really had a lot of vision problems. I found myself being disappointed when the MRI came back clear, not because I want to have MS but because I just want to know what is going on with me and at least then I would have a diagnosis and would be more comfortable starting meds. I'm confused because it seems like there aren't other options or at least if there are the doctors can't think of them. If there's anyone that has ideas on what else it could be I would sure love to hear them.
I apologize again for the length of this post, I'm at my wits end and I'm hoping someone out there can shed some light for me on what I should do next.
The mri was at a hospital? You can ask how old it is? Older machines are not as finely tuned. If the doc wants to put you on a disease modifying drug, does that mean he/she believes you have significant signs of ms? You can ask him, you can set up an appointment with your husband and a list of questions, if you dont trust this neuro find another one. They, doctors, dont prescribe an ms drug for nothing, they are uncomfortable and very expensive even with insurance. But you must do things at your own pace, are you ready for a diagnosis?
When women are pregnant their symptoms subside, then return after pregnancy.
Unfortunately sometimes it takes a long time to get a diagnosis. Theres no test that says you have MS or not. The diagnosis comes after collection info over time and seeing if it points to MS. My MS is progressing and my MRIs have been clear for a few years. I suggest keeping a log of symptoms and the severity. Also document what aggravates or brings symptoms on. Such as heat, cold, stress, having a cold or fever. Take the log book with you to your next appointment and share it with your doctors.
good luck and keep us posted on how you are doing.
I'll echo what the members above said- MS can be complicated to diagnose, and diagnosis can take a long time, even if it is definitively MS. Of course, as you have probably thought, it may not be MS and further investigation is necessary. I'm sorry that you're in this limbo land, we do have a resource to look for doctors if you'd like another opinion:
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Jess, MS Navigator
Ok does the Dr still want you on meds seems like the would at least do a lumbar puncture. And have you had a sleep study done? Because with MS it can affect from any muscle down the list. For many from what I recall have complained about the fatigue. Same as myself and a lot of us end up having sleep apnea to the list. That can be affecting you as well. I get provigel as well. But I don't like taking it to often my pharmacy charges $80 for a month supply and I break them in half when I do take them but then I'm awake but still no energy to get up and out for very long. It's like I'm just bearly able to do anything most days. There's days I actually need help in and out of the shower and to get dressed. Then there's days I can manage to get in and out on my own if I'm really lucky.