My neuro won't listen to me when I talk about my MS symptoms, what do I do?

[AKit23]

I have had MS symptoms for 5 years now. It started mild but has worsened with each flare over the last 5 years. I have seen so many doctors, probably more then I can count on two hands, and been told so many times that my symptoms are not due to anything. I finally had a doctor who sent me to a Neurologist who diagnosed me with Fibromyalgia and began treatments for the fibro. Now, here is the issue. While the Fibro diagnosis explains the pain, fatigue, muscle spasms, and difficulty sleeping it doesn’t explain many of these symptoms:
Numbness in the left side of my body
Falling over frequently due to dizziness during a flare
Difficulty walking, dragging my left foot because my leg doesn’t want to lift up
Vertigo
Blurry vision (this actually caused a car accident and my neuro still wouldn’t listen to me)
Difficulty using my left hand to pick up objects, dropping items because my grip isn’t good enough

Some of these symptoms will fade when the flare is over but some of them have stayed. The numbness gets worse with each flare and it sticks around after the flare fades. I often have to use my husband’s wheelchair when we go out to an event because I will fall over and hurt myself or trip from walking, or the pain gets bad enough that I cannot walk anymore.

My MRI was done 1.5 years ago and came back clear, so my neuro refuses to entertain the idea that I might have MS or ANYTHING other than fibro. He says that if I had MS that the lesions would have shown up on the MRI since I had been having symptoms for 3.5 years at that point in time, and he has no real reason why he won't look at other possible diseases. I wonder if I should find a new neuro but frankly… I am sick of doctors. I have seen so many of them and I am tired of having so many doctors dismiss my issues. I understand that I shouldn’t self-diagnose and that isn’t what I am trying to do. I am trying to get my doctor to listen to my whole story instead of the parts he wants to listen to. I don’t want to be one of those people who get stuck with the fibro diagnosis because once you’ve been labeled, you’ve been labeled.

[supermum_ms]

Hi and welcome,

Whether or not your answer could possibly be a neurological condition like MS is likely going to be determined by your neurologically abnormal clinical signs, if there hasn't been any lesions showing up on your MRI(s). Keep in mind that what you've been experiencing is less likely to be neurologically caused, if the progression you've experienced isn't at least corroborated in some way by your clinical exams.

Fibro 'use' to be a wastebasket diagnosis, things have definitely changed a lot over the years but there are still some doctors and even patients who incorrectly believe Fibro isn't a legitimate diagnosis......It is never in your best interest to stay with a doctor you don't trust or have confidence in, so i would strongly suggest you get your diagnosis reassessed by a neurologist who specialises in Fribromyalgia, and if your dx is confirmed, a Fibro specialist will also rule in/out all it's associated medical conditions too.      

Hope that helps.......JJ

[supermum_ms]

oh sorry i meant to also mention a worth reading article about fibro

https://patients.aan.com/resources/neurologynow/index.cfm?event=home.showArticle&id=ovid.com%3A%2Fbib%2Fovftdb%2F01222928-200905050-00024

[AKit23]

My only concern is that I have only had one MRI several years ago that didn't show anything.. but nothing has been done to check again since then despite the increase in symptoms.

My doctor told me he will not do another MRI, a LP, or the evoked potential test. How can I trust my dx if my doctor won't do testing to ensure everything is ruled out.

I have no doubt that fibro exists.. I am just not sure how that dx explains quite a few symptoms that are not considered "traditional" fibro symptoms.

I agree, I need to find another doctor. I have trouble trusting my doctors, because I have had very bad luck finding doctors who will really listen.

[HVAC]

Doctors are specialized these days. They only look at the disease they specialize in so MS specialist may be a good idea. With out evidence a MS specialist is not going to diagnose MS. Your symptoms do not count for anything with MS without the neurological exam and MRI. Some doctors will not order a MRI with out  an abnormal neurological exam. That is the most important test.

It shows I have double vision, brain stem involvement,left side weakness, something with my chin, and foot drag.This has not changed in years. If you have brain damage it does not come and go it shows up on all neurological exams. It can show up with or with out symptoms.

Also most people with MS it starts in the eyes Optic Neuritis or double vision. It shows up on all MRIs.

[HVAC]

You can always get a new neurologist. With out a MRI with lesions most neurologists will not entertain MS. MS specialize so you might find one who specializes in MS. With out the lesions it will be more of the same. A new neurologist will start at the beginning which with a new MRI that might be good. If this MRI is clear you are back to where you are I am afraid. Also your neurological exam is very important. That is reflexes, eye movement , etc. That tells a doctor exactly where you have neurological damage. It is more accurate than a MRI. You can have your GP do one. That is how my GP sent me to a neurologist.

It is harder to be diagnosed with MS if you have a diagnosis like Fibro. If in your gut you think it is MS just keep pushing.

Alex

[AKit23]

I think it is MS or another central nervous system issue. I know it isn't fibro, because there are to many unexplained symptoms and I don't have the tender points. I don't "want" an MS diagnosis. I just want an answer that is correct, and not to be stuck in the Fibro zone where no one will entertain the possibility it could be something else.

My biggest concern is that I might have something progressive (my symptoms get worse with every flare over the last 5 years) and that by the time I find a doctor who correctly diagnoses me and I start the correct treatment to slow progression that I will have lost more mobility and other functions that I didn't have to lose if my doctors would just listen to my concerns.

I know I am not a doctor, but I am the one experiencing the symptoms and I am the one who knows what I am feeling. I wish that more doctors would take that seriously.