Virus to Anxiety to Fibromyalgia to arthritis to MS??

New diagnosis and before diagnosis
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I suppose I never through of going down this avenue of thought because I didn’t seem to have the common early symptom of numbness and tingling. No double vision. My pains actually originated in my lower back, legs, knees, neck, arms and hands. Couldn’t work out if it was muscular or joints or nerves. Pain would vary between feeling like I had overdone a workout to a sharp pain almost like I’d been stung to throbbing pain in feet and hands.

Gp referred to neuro who after 4 weeks of clinical tests and bloods told me to either see a rheumatologist or a psychologist. I have no history of depression or anxiety so was really confused. During these 4 weeks I had developed tremors in my arms and legs which he dismissed as anxiety and I dismissed as being on a cocktail of heavy drugs (that he put me on) . Went to rheumatologist. Initially written off with fibromyalgia. After weeks of treatment and no change went back asking her to maybe switch med and instead walked out with an arthritis diagnosis (ankylosing spondylitis).

I’m now on no meds because I’m nervous of trying to tell the difference between symptoms and side effects. tremors come and go. Also I’ve notice it’s worse in the heat or when I’ve had a very busy intense day. 3 days ago my tongue starting tingling, then my lips, yesterday my nose felt numb and now this morning I feel like the left side of my face is numb and tingling. its been 3 months since this journey started and for the first time a doctor (my gp) suggested i may want to get an MRI. . If I had MS surely I would have started with the numbness and tingling? Not the muscular pain.

I actually don’t don’t know what to do next. My gp can order the MRI but is he the most qualified to interpret results. My rheumatologist wants to put me on arthritis meds. And the neuro thinks I need a psychologist. Meanwhile I’m limping around because of the pain in my feet (that doesn’t sound like MS does it??)

I know 3 months is not that long compared to other people’s journeys -but it feels like my life has been on hold since all this started I have 4 young kids and I’d really like to get back to normal!!

thanks for for taking the time to hear my drama!!

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I didn’t have any numbness or obvious neuro symptoms at the start. I was told I had me and fibromyalgia. 2016 I was diagnosed with ppms. It’s often confused me as slot of people do start with more obvious symptoms,but I am quickly learning that me is so different for everyone.

Hope you get some answers.

Christine

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Hi Clairee

When you say you had 4 weeks of tests with the neurologist, which tests have you had?

If you’ve had a combination of any or all of MRI, lumbar puncture, VEP (visual evoked potentials) nerve conduction test, plus had neurological examination, and the neuro doesn’t think it’s MS, then it maybe that the neurologist is correct that you don’t have MS.

However, if you’ve not had any of these, then you could think again about who you’re seeing and possibly, if you can afford it, having a private appointment with an MS specialist neurologist. If that doctor thinks more or different neurological tests are warranted they can often refer you back to their NHS practice (you may have to do some research to find an MS specialist who has both a private and an NHS practice, then get your GP to refer you).

As you’ve figured out, and Christine has said, although many people do have either optic neuritis and/or numbness and weakness as early symptoms, not all do. As has been said many times before, MS is a contrary beast and will do what it likes, when it likes. So your early symptoms aren’t in themselves something that will rule in or out MS.

Although, it is of course at least as likely that you don’t have MS as that you do.

It is a difficult position to be in, to be passed from one specialist to another, and to not have confidence in any.

You are correct in that a GP may be able to request an MRI but be unable to interpret it. Only a neurologist can diagnose MS. And equally, only a neurologist can properly read an MRI.

I hope you get to the bottom of your symptoms, you have my sympathies; it is truly a difficult time to be living through, and having a herd of children doesn’t help either.

Sue

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Thanks for replying. No I haven’t had an MRI or the others sue mentioned. He’s only done a physical exam. You know when they make you lift your legs, stand on one leg, etc. He was an awful person. After 4 weeks he basically told me my symptoms were probably anxiety being exacerbated by my overbearing husband. (My husband insisted on being in the appointments with me so we could both remember the information given). I have found another Neuro -I know I am in a very privileged position of being able to see someone privately! My appointment is on Wednesday but honestly at this point I have convinced myself that I should just cancel it. I can’t handle one more doctor looking at me like I’m nuts! I continue to have the awful pain in my back, shoulder, right foot - so bad I limp- tingling in feet and hands. And this weekend I have tingling in my tongue, lips and a numb feeling on my nose. My whole face aches -like you get from smiling too much. And my vision is suddenly blurry. Took myself to spec savers this Morning and apparently my prescription has changed (I last had a test 3 and a half months ago and everything was fine). So now I’m thinking all my funny face symptoms are just from an eye strain.

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Clairee

In your position, if you can afford it, go to the appointment. It’s pretty unusual to get such a lousy personality deficient neurologist. And you have every right (and very good sense) to take your husband into the appointment with you. My husband always comes with me. And I’d be furious if anyone suggested he shouldn’t.

If the private neuro feels that it’s not MS, then you’ll believe it. If you don’t go, you’ll wonder and worry.

Sue