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Give up on answers?

I am frustrated and unsure of what to do or what's next. I'm sure this is a common complaint here. I'd just like to know if anyone has any tips on what to do or if I should just step back in my pursuit for answers.

Here's the rundown:
About 8 years ago, I started experiencing frequent dizzy spells and a right hand tremor. I ignored this for months thinking maybe it was low blood sugar or too much caffeine. Until one night I experienced one very odd episode. I was eating at Applebee's and was looking at the tv which was reporting the weather (there was a storm coming in). I started feeling dizzy as I watched the movement on the radar so I turned away from the tv, but as I turned my head the whole room began to spin and I had a buzzing sensation in the base of my skull. It was alarming enough that my husband pressured me to seek answers. So I scheduled an appointment with my GP who referred me to an ENT.

The ENT ordered a ENG, CT, and (after I started experiencing parasthesias in my face, arm, and leg) an MRI. The only thing notable was the MRI showed increased t2 signal in the deep white matter right frontal lobe of "very questionable clinical significance."

Oddly enough, the ENT's office called to tell me the results of the MRI showed I had issues with my sinuses and would I like to come in to talk to the doctor about them. So of course, I scheduled an appointment. He then proceeded to tell me that nothing was wrong with my sinuses and everything was normal so he was "walking away from this case." I was stunned. The only thing I can figure is he thinks I'm depressed and imagining my symptoms (he actually told me his daughter had experienced this) or he thinks I'm seeking medication. I'm not. I just want to know what's wrong with me.

After a few weeks of increasing symptoms, including the hard to ignore parasthesias, a droop in my right eyelid, aches in my joints despite the lack of exercise, tripping when I walk down the hall (this happened several times over the span of a single trip down the hall, could just be my shoes were too grippy or I am just clumsy), I finally called my GP for help explaining my dismissal from the ENT.

While waiting for that appointment I started experiencing the parasthesia in my tongue and throat. I sometimes stutter like I've lost my breath in the middle of a word and have to repeat it. And occassionally I will choke on my food or pills. I actually went to the ER when I thought I had aspirated one.

I was referred then to a neurologist who assumed I was there to discuss my migraines and tried to put me on a controller med because he didn't like the one I was on. Although this didn't address the reason I was there, I figured there would be no harm in at least preventing the migraines except, this was a blood pressure medication that warned not to take if you have asthma. I do. I mentioned this to him and he said I would be fine.

So despite not getting anywhere with my more concerning symptoms, I started taking a new med that within days had me (no joke here) lying on the bathroom floor at work because I felt too weak and miserable to function normally. My heart rate was too low and I was starting to struggle to breathe. I called the neurologist's office to tell them I had to stop taking that med and to please listen to my problems. They scheduled a nerve test. Finally! I felt like I was getting somewhere.

Except, I had the nerve test yesterday and it turned up nothing. He said to me, "you are too young for these symptoms." and left. That's right. Just left. No suggestions on what to do now or acknowledgement that I have symptoms that are still not diagnosed.

I asked the nurse, "what now?" and she just looked sympathetic and said, "call your doctor?"

But see, here's the thing, my husband is starting to think I'm nuts because I complain about all this stuff and there isn't any clear evidence that something is wrong. I'm just tired of the dismissals especially now that I'm getting it at home too.

Has anybody felt so frustrated they just gave up on answers?

What should I do?

  1. I'm so sorry this is happening to you. Sso many of our community members have also experienced feeling written off by healthcare providers, being told their crazy by doctors and family members alike, beginning to feel crazy themselves... sometimes the road to a diagnosis can be really lengthy and challenging unfortunately. Here's an article about others' bumpy roads toward a diagnosis: https://multiplesclerosis.net/living-with-ms/misdiagnosis-ms-community-experience/

    I know it's unbelivably frustrating and heartbreaking - but you are not alone. Here are a copule forum posts from others in the community who are going through a similar experience if you'd like to read and/or connect with them: https://multiplesclerosis.net/topic/please-help-could-this-be-ms/ and https://multiplesclerosis.net/topic/could-it-be-ms/

    Hope these help. We're thinking of you and hope you'll keep us posted on how you're doing. - Shelby, MultipleSclerosis.net Team member

    1. Thank you. The article was certainly eye opening. I don't know if it helps or hurts to know how common these frustrations are. I realize that just because my symptoms may point to MS does not mean I have it. I'm just tired of not knowing why I'm experiencing all this weird stuff. There are many things I didn't mention in my post above because the list seems endless. I will say that the "please help" forum post was eerily similar to my experience so far, including the weird tingling in my chest. But when I mention things like that to the doctors they just nod their heads and move on to questions like "are you sleeping on your side?" or "are you depressed?" I've heard the "it could be psychosomatic" response from my ENT.

      I just don't know if I should wait this out or keep pursuing answers. And is I keep searching, then what's next?

    2. Hi @abbyrie3
      We are so sorry that you are not getting answers - as this seems to happen too frequently. You know your body better than anyone, and you should pursue another opinion if you wish. We don't want you to give up hope!
      Meagan, MultipleSclerosis.net Team Member

  2. abbyrie3 - what an unfortunate experience you went through and I can see how that would frustrate someone. If you are not happy with the results you got from that neurologist, go get a second opinion, sometimes a third opinion, etc. You need to find one that will really listen to what you are saying and will want to help you instead of just blowing you off. Good luck, keep in touch.

    1. abbyrie3, any update on your situation? Your symptoms sound very concerning.

      1. Nothing yet. I had another round of parasthesias last week that including a prickly tightness around my abdomen and a new symptom, my teeth were chattering even though I wasn't cold. I emailed my neurologist and received a response that he is out of the country and that I should go to the ER if I am concerned its serious, schedule an appointment with an alternate doc who doesn't know my case, or wait for his return. It was late Friday when I got the answer. I wasn't about to spend all night in the ER to still not get answers and my symptoms let up by Monday. I have an appointment to follow up regarding the migraines after the first of the year.

        On the plus side, my migraine meds are working well.

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