I've had some mystery neuro issues the past year. Have you done a brain MRI w/ or w/o contrast? That was like the *first* thing my neurologist did after I saw him. And my symptoms aren't as severe as yours.
I've had some mystery neuro issues the past year. Have you done a brain MRI w/ or w/o contrast? That was like the *first* thing my neurologist did after I saw him. And my symptoms aren't as severe as yours.
No brain MRI. I do have spinal issues, but they are thoracic and lumbar. I was hoping she would order a brain MRI or spinal tap or SOMETHING!
My worst case scenario today was that I would feel blown off and no game plan so... that sucked.
RIGHT?! This was my concern when I saw that she was focused on ALS. Ugh. And this is Yale, I expected so much more.
From experience with my mom, I do think they specialize in certain areas such as movement disorders, and may not feel good speaking to something outside of that. Not that they know nothing about it, but that it is not what they"do". But it sounds like you were not treated well from outset and I am sorry for that. I do think finding another one is worth doing.
What are your symptoms?
While that is true, my aunt is a neurologist and my Dad has MS and I’m still shocked she could not tell her if her symptoms were at all aligned with those of MS. It is not a rare, little known disease.
From experience with my mom, I do think they specialize in certain areas such as movement disorders, and may not feel good speaking to something outside of that. Not that they know nothing about it, but that it is not what they"do". But it sounds like you were not treated well from outset and I am sorry for that. I do think finding another one is worth doing.
What are your symptoms?
While that is true, my aunt is a neurologist and my Dad has MS and I’m still shocked she could not tell her if her symptoms were at all aligned with those of MS. It is not a rare, little known disease.
I don't think the doctor knows nothing about MS or is unaware of it, but their specialty is ALS, so I don't think they are going to give an opinion of other than that and refer you to a neurologist who might specialize in MS or some other movement disorder.
While that is true, my aunt is a neurologist and my Dad has MS and I’m still shocked she could not tell her if her symptoms were at all aligned with those of MS. It is not a rare, little known disease.
I don't think the doctor knows nothing about MS or is unaware of it, but their specialty is ALS, so I don't think they are going to give an opinion of other than that and refer you to a neurologist who might specialize in MS or some other movement disorder.
Oh I get that. The OP made it sounds like she literally wouldn’t even discuss it which is weird. I would think she would say whether or not she recommends seeing an MS specialist. If her symptoms didn’t at all align I would think she would tell her not to or if they did she could recommend someone.
Honestly, I would see a functional provider at this point. Your story sounds awfully similar to mine, with regards to being passed from specialist to specialist with no one really giving a shit as to the root cause of what is wrong. I went through this for over a year. I finally saw a functional provider who was in internal medicine provider previously and I started getting answers.
I third looking at a functional medicine provider - www.ifm.org/
There are some who are more like PCPs, but there are also providers who specialize, so you may be able to find someone near you who specializes in Neuro issues.
I don't think the doctor knows nothing about MS or is unaware of it, but their specialty is ALS, so I don't think they are going to give an opinion of other than that and refer you to a neurologist who might specialize in MS or some other movement disorder.
Oh I get that. The OP made it sounds like she literally wouldn’t even discuss it which is weird. I would think she would say whether or not she recommends seeing an MS specialist. If her symptoms didn’t at all align I would think she would tell her not to or if they did she could recommend someone.
We have been down this road with my mom and the first neuro we saw specializes in strokes. He would not give us any indication of what could be going on with her. Even when I asked, he would not give a definitive yes or no, just to run more tests.
I’m with @angryharpy , neurologists can be assholes! I went through 6 before I found one I’d see again.
Also, with regard to your comment and thinking Yale would be better. I had a similar experience with Johns Hopkins. Everyone has this view of them being great, and I was so disappointed in seeing specialists there. Reputation often outweighs patient care, and some research hospitals can be shitty if you aren’t interesting enough for them. Sorry you had a crappy experience.
Post by Poeticxpassion on Aug 23, 2019 17:36:59 GMT -5
calamity, I’m so sorry the appointment today didn’t go well. I would definitely be looking for another neurologist. Your symptoms sound super familiar to mine, and I was diagnosed with MS. I would insist on a MRI and a spinal tap. Thinking of you and hoping you get answers soon. *hugs*
Post by snipsnsnails on Aug 23, 2019 20:02:11 GMT -5
Oh, calamity, I’m so sorry. What a defeating experience. I hope that there are answers to come for you very soon. Until then, I’m continuing to send love and hope to you.
I'm so sorry calamity . It is so frustrating and disheartening to be constantly denied answers.
I went through 3 neuros before finding one who knew about women and epilepsy. Like what bc would work in conjunction with my meds, how I would be monitored during pregnancy/what extra tests I needed and how my hormones can affect my meds. My OB referred me to my current neuro after he personally monitored me/did extra testing through my pregnancy because my last neuro couldn't be bothered to do so. And in fact steered my wrong a few times during that time. And this is all after it took more than a year and many different dr appts to get someone to believe my parents that something wasn't right when I started having seizures at 11. Every single other dr I saw was convinced it was because I had started puberty and they would stop on their own.