Symptoms and tests being ignored.

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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ambre321
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Joined: Fri Apr 16, 2021 11:36 am

Symptoms and tests being ignored.

Post by ambre321 » Fri Apr 16, 2021 12:54 pm

Hi! I'm new to the site! I'm just looking for a better understanding, and maybe guidance on how to approach things with my doctors.

In 2012, at 25, I started experiencing neurological symptoms, muscle weakness, fatigue, urinary issues. All sorts of things. I fought for an MRI, which was done in 2013, which showed hemangioma on C4. Nothing beyond degenerative disc disease. So it was dismissed, despite symptoms. In 2013, I fought for a spinal tap, which showed Oligloconal Bands, had abnormal Evoked Potentials, abnormal EMG. I was told everything was normal (later discovered this was a lie), nothing to worry about. Despite worsening symptoms, once again dismissed, by TWO Major clinic neuro teams.

In 2018 I started losing my hearing, GI issues worsened. by 2019, I had two feeding tubes, in 2020, I was on TPN due to feeding tubes failing. Now, I have almost no sensation in my legs, diminished reflexes, severe muscle fatigue/weakness, difficulty with muscle (motor) control in my legs. I now use a wheelchair most days when I leave my house.

I was finally able to get an MRI Last January, after trying for nearly 7 years. Due to my having a pacemaker, NO ONE wanted to do it, despite increasing/worsening of symptoms. They had to stop it part way through due to my HR dropping to the 30s. All i got results wise was "its normal" however the report is anything but normal. Showed multiple new growths, DDD, stenosis, and a few other things.

I switched Primary Doctors last year and she's been fighting to get tests and referrals, however rheumatology and neurology keep refusing the referral. They absolutely refuse to see me, despite worsening symptoms. I had a spinal tap done on 4/13. The nurse forgot to collect the blood and I wasn't notified until end of the next day. These results show elevated CSF protein, but no bands....

I'm at a loss. I've seen several stand alone Neuro's who feel it's MS, but won't diagnose it. The head of the autonomic clinic at Vanderbilt even feels it's MS, multiple primary doctors, and nephrology as well. Yet neuro won't even have the conversation.

I've been diagnosed with dysautonomia and severe gastroparesis.

Each "relapse" is worse than the last, and with a new weird symptom.

How can all these tests previously be abnormal, but now be normal? It doesn't make sense. I still can't get them to repeated the Evoked Potentials, or MRI. The fact that the initial facility lied and told me they were all normal, really doesn't sit well with me. The doctor doing the spinal tap the other day said it's so hard to diagnose, because there's no one definitive test. She even brought up that some don't have lesions.

I'm 35, have major balance and gait issues, urinary issues, GI issues, hearing loss.. and so much more. Yet I can't get neuro to actually listen to me. If you look at my list of symptoms, it matches perfectly, yet I keep being ignored.

We're working on referrals to outside teams. We've lost all faith in the current university hospital i'm at. Unfortunately many private specialists in my area won't take me as a patient because i'm "too complex". When in reality i don't think i'm that complicated at all. I feel like i'm just being dismissed and ignored.

Does anyone have any suggestions on how to bring this all up and how to get a doctor to listen? Any guidance or anything is greatly appreciated. Thanks!

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Scott1
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Re: Symptoms and tests being ignored.

Post by Scott1 » Sun Apr 18, 2021 12:36 am

Hi,
What a difficult set of symptoms. All this can't be easy at all.
I think changing doctors was a good start but I can't work out why you are having so many problems with referrals.
If you ranked the problems as you experienced them what order would you put them in? (I know that is an unfair thing to do. )
Once you have done that, if you had to cluster the symptoms in couplets, could you, or are they very unalike?
The urinary issues should go to a urologist, the GI and bowel issues might go to together(strange as it seems, the hearing might belong with this group as well.)
Rather than chasing an all-embracing definition, like 'MS', I would try to take one issue at a time and go to a specialist in just one thing. A urologist is usually consulted by a neurologist but a good urologist will call in a neurologist to help him. That might be a way of breaking the cycle of rejection.
The other issue that I don't follow is what health condition prompted the pacemaker and when did you get that? Does someone still see you about it and what opinion do they give you?
Alternatively, can you get into a loop with these people? (I presume you are in the US)
https://www.upmc.com/services/neurosurgery/about
Regards

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