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Just getting started with my doctors

I’m very new to this process and starting to suspect I might have MS. I have an aunt with MS and I have several risk factors, such as having mono when younger. My first possible symptom occurred 7 years ago when, out of the total blue, I woke up one day with double vision and flashes of numbness in my face. I went to the ER and they did an MRI which looked fine. My vision was so bad I could not see to drive, and my mom stayed with me from out of state until it randomly went away on its own about 2 weeks later. No diagnosis of anything was ever made, it was a mystery. Then maybe a year or two after that, I started getting numbness in my hands and forearms…which I initially thought was swelling from eating too much salt or something. The periods of numbness starting happening with more frequency and this year, it has been nonstop since February…numbness in my hands and arms up to my elbows, and in both my feet. I occasionally get the flashes of numbness on the right side of my face… which will come on for a day or two every couple of months. Lately I have been having an uncomfortable pins and needles feeling in my arms and legs which is worst at night and keeps me from falling asleep. What are your thoughts about these symptoms? I was seen in the ER recently, the Dr did some labs to look up my “electrolyte levels” and said they were fine so I don’t have MS. ??? I have seen an orthopedist for a possible pinched nerve but they did X rays and did not find anything. He prescribed a week of steroids and my symptoms almost completely went away, but came back worse than ever when the med stopped. I am likely getting a nerve conduction test next and I’m hoping a referral to a neurologist. My husband thinks I’m being a hypochondriac.

A referral to a neurologist sounds like a very good idea. I hope that you get some answers soon. By the sound of it, your husband hopes that there’s nothing much the matter with you, as is very natural, and has a rather cloth-headed way of saying so! We’re not always at our best when we’re worried.

Hello Rhea

As Alison said, referral to a neurologist might be a good idea.

You should be aware though, that there are other diagnoses that share symptoms with MS, so while it certainly appears that something is not right with you, it may not be MS.

Having a relative with MS increases your likelihood of having MS slightly, have a look at Risk of developing MS | MS Trust If a parent has MS, your chances of also getting it are about 1 in 67. A more distant relative (say, an aunt), brings the likelihood down further.

Actually, the fact that you had mono (in the U.K. we call it glandular fever or Epstein Barr virus) increases your likelihood of getting MS possibly more. (Epstein Barr virus | MS Trust ) Although many people have EBV and don’t go on to get MS.

There are so many different factors that influence whether a given individual will get MS. Your genetic background is one, previous exposure to viruses is another, gender and age still another. One thing that’s a major factor is geographic background, in particular where on the planet you grew up. Partly this would be about vitamin D levels (ie the sunniest places tend to have lower levels of MS). Honestly, it’s a whole load of factors, if they come together at a given point, you’ll get MS and if they done, you won’t. Kind of ‘luck of the draw’!!

I don’t think having ‘normal’ electrolyte levels is especially relevant to MS. A nerve conduction test might be more useful, although it’s not directly used in the diagnosis of MS.

I suggest you see / contact your primary health doctor and ask for a referral to a neurologist. They can do a neurological examination and then request tests as seem relevant from that exam.

Sue

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I would start with the neurologist and see if he recommends a nerve conduction test. You may have a long road ahead of you in getting a diagnosis, whatever it may be.

But for the most part, just ignore what the ER doctors tell you. I have a very low opinion of them, because their job is to get you out of there as quickly as possible. Electrolyte levels have absolutely nothing to do with MS.