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Multiple Sclerosis Message Board


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Oooooo.
Maybe I shouldn't be typing right now because I'm fresh out of my recent neuro visit, but I need a little advice and maybe just to get this off my chest... I'll try to be brief, so pardon the truncated language.

I'd actually been on this board a few years ago with some troubling neurological symptoms. They went away for the most part, so I stopped persuing that angle. I've got a complicated history, most importantly... diagnosed with CFS after a bad case of mono (seems like I just never recovered). Then, years later, diagnosed with Fibromyalgia.

In 2006/7, I had a 3 day bout of balance issues, as if I were on the high seas. I couldn't gauge where the floor was... I had to constantly be holding on to something, etc. Bad enough that it sent me to the ER. Follow up with Neuro... actually two of them. Good experience. Bottom line, MRIs came back clean as a whistle. However, it seemed there were abnormalities in the exam. But, my symptoms seemed to go away, so in follow up, the doctor offers this: "It's not your imagination... something is going on but it's just not showing up in the scans". It was oddly comforting to hear. But I was also feeling pretty damn good at the time, so I felt no need to continue down that path.

Fast forward to now. A tremor in my left hand has become worse. Now it seems my head is getting a little jerky. The off-balance feeling has returned but seems to come and go and has stayed with me for at least a month now. I've begun to smell things that aren't there. I actually thought maybe I had an ear/sinus infection because of this, but was checked and no.

So, new neurologist. This is irritating, because I really liked my last one but the department said it's been so long, that they were pretty much treating me like a new patient. Fantastic. So my father goes with me.... to advocate. Unfortunately, he took the advocating a little too far and offered info that I knew was going to affect the path of this visit. Neuro asked if there was a history of tremor in the family, and I said no. My dad pipes up and says "oh, yes yes" and then starts going into detail about it. He couldn't see my eyes flaming. That was the turning point of the visit. Shes says "that's good to know" and gets all perky. I could hear the doors closing at that very moment, and I was crestfallen. I've been through this with doctors too many times. The problem is, my dad just didn't know how the game needs to be played, and I forgot to tell him not to say anything. Why? Because I know what essential tremor is. I know it can be inherited. I know it's benign. But I knew that if the neuro knew this, she'd shut down all other possibilities. I guess she wasn't interested in the fact that there is also MS in the family.

She gave me a half-assed - not even a full exam. She ignored the fact that I've been smelling weird crap. She ignored everything else at that point, because she had already decided that essential tremor was my problem. Well. She did, thankfully, give me the past doctor notes, and I have read them with great interest. Apparently the physical exam showed some abnormalities and at least I have that on record. Now. If you're a neuro, and you have this info in front of you, wouldn't it make sense to check those things again just to be thorough?

She actually told me that there was nothing that would cause the imbalance sensation that I was trying to describe. What? Was she kidding? She decided to farm me out to get an ear test. Great. I then said, well, it's really the combination of all the oddball symptoms that have me concerned and would indicate it's a brain thing. She didn't respond to that. She also gave me the long description of essential tremor and noted that it is usually bilateral but rarely can be on one side. Um. Considering the past notes, considering the complaints I was coming to her with in addition to the tremor considering it is very much on one side and my leg seems to be a bit wonky too... she ignored all of it.

I left the visit very upset. Because I liked that department and also, these notes will now be available to other doctors who will then see her assessment and dismiss the issues. It's like a nightmare cycle. I will, to her credit, note that she also ordered an MRI. So if something shows, then something shows. But otherwise, her visit has now eliminated further possibility for doctors to actually find the CAUSE of these issues!

I guess my question is, how would you proceed? I feel like now I can't go back to this department and find someone else who would do a little more digging... be a little more persistent... and for god's sake, look at the entire freakin picture. Should I just wait for the expectedly clear MRI to come back? Or should I not get it done and find another neuro who will actually look at my past records?

Sigh. Sorry for the rant. I'm so dejected right now. :( Thanks in advance for any recommendations / experience you may have.

Blessings!





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