Has anyone had any experience with Dr. D'Angelis at Mt. Sinai in NYC? I'm going to see him on the 18th of July for a second opinion. We're still trying to figure out what the heck is wrong with my nervous system. I got the results of my EEG back and my "seizures" I've been having daily are not in my brain, which means they are probably spinal cord related in some way. The neuro won't diagnose me with MS yet based on my normal MRIs, but says I have neurological disease. I'm worried because this is progressing so quickly and I have no way to slow it down or to know what the future holds. It's still presenting as MS quite clearly despite all the normal tests... but one would think with the severity of my disability my tests would be whacky anyhow. Who knows.
Hi, Wallis. I really haven't heard anything about the doctors at Mt. Sinai individually -- at some point my PCP suggested I go there but I don't remember the name of the doctor he wanted to refer me to.
I'm sorry this has been so confusing and grueling for you. Do you know what things they've ruled out? This would be helpful to know since MS is somewhat a dx of exclusion. Also, did you ever get confirmation or not that you have ON? I don't recall you updating on the ophthalmologist's findings or maybe I missed it.
Hi Beary, it's been a while! So far, they seem to have most likely ruled out lupus (I have a weird dna result, that actually tends to be positive with MS too), lyme (5 times tested negative for ELISA and western blot), neuropathy, ALS, leukodystrophy, brain problems, cancers, disc problems (a minor slipped disc in my neck was all), stenosis... I can't think of more, but that's a fair few things ruled out. MS is not ruled out or in so far. My spasticity seems to have progressed to the rest of my body, resulting in these seizure-like events (thats kind of what gathered from speaking to the neuro). As far as ON is concerned, I have near constant horrible pain in my right eye still with occasional blurriness. Additionally, I discovered using online tests, of all things, that I'm almost completely red-green colorblind. I can see both red and green, I just can't distinguish them well together, just like a colorblind man! The odd thing is, I've had glasses since I was 8, and I've never been color blind until now. The NO determined I had color vision loss in my affected eye, but now both eyes are r-g colorblind. Basically, the NO said symptomatically, my eye presents as ON, but once again, all the tests are clear. I can't express my frustration right now. I can no longer drive, I can't be left alone for a long time... what's going on here!? And I am waiting as patiently as possible to receive my service dog so I can be more independent, but its such a slow process I can't take it! Sorry for the rant.
Write back soon
Oh boy, Wallis!!!!!! (((You need a hug!))) Listen, I have only ever recommended a doctor, not pushed, but I'm going to now for the first time! Please, please, if you need to see an NO again, I hope you go see the doctor I recommended to you! I can't guarantee that she'll give you a better clue but I really don't like the way NYU treated you. It was good you didn't get the guy I got but at least he had a visual field testing machine in his office! I really didn't want to alarm you but I thought your story about the visit was a little wacky. Sorry if I'm coming on strong but I HATE HATE HATE you being bounced around like this and flying back and forth so much!!!! (Your call, but please at least consider it.)
Could a "weird DNA result" be a clue??? COULD this be something genetic in origin and would it make sense for you to see a geneticist? Even something like an enzyme issue can be associated with a disease presenting itself like MS. I hope this is resolved soon, Wallis, and when it is, you are going to be an excellent candidate for the show "Mystery Diagnosis"!!! (I love that show -- honestly, it's opened up my eyes to a lot of things! )
I love mystery diagnosis, and my friend and I have joked for years that I need to go one once someone figures this out! The DNA test is actually a lupus-specific test, but its supposed to be linked to a test called ANA. If the DNA is positive, the ANA is too, but for me, ANA is negative with positive DNA. I read that this has actually occurred in people with MS for some reason. I will definitely see if I can get in for a second opinion with the NO. I've forgotten the name, however, so if you could, might I have that information again? My dad jokes that I have "Wallis" disease since I clearly have something, but no one knows what! Hopefully the MS doc will have some ideas. I am getting a thoracic MRI next week since the last one got lost before being read, and probably the MS doc will want an LP. Thanks so much for your hugs and sympathy.
Her name is Dr. Golnaz Moazami and she's up at Columbia Presbyterian. She's got an office in midtown as well with office hours once a month but all the fancier equipment is uptown. The only drag can be is that you often need to wait but she is the only doctor that I do not mind waiting for! She devotes TIME to each patient. She really cares, Wallis -- and any of the women working in her office will tell you that. They are ALL great and very helpful. Best bet to decrease waiting time is to get an appointment earlier in the day. When/if you call, if you convey your situation in the right way, I would be shocked if they didn't squeeze you in, even if they are booked. Keep me posted!
I hope that this next trip gives you some answers, Wallis. Since you're also a MD fan (how GREAT is that show??!!!???) you already know the most important thing -- all it takes is ONE person has a clue. I learned through situations with both of my parents the importance of advocating for one's own health but that show always serves as a great reminder of that and also that doctors are only human. Having a medical degree in anything does not give you the key to universal knowledge. It's amazing -- even though the show can be sad in terms of illnesses, it never ceases to be uplifting!! The worst thing is not knowing, isn't it.
I wanted to add that when I first realized that something was wrong because of my eye, several of my friends also joked that it was probably just some "weird 'Bearygood' disease". Well, I guess they were right -- just didn't think it would be MS.
Someone I "know" was on the show -- she was originally dxed with Lupus until years later, she stepped on a knitting needle and her sx ran rampant. It led her to a different doctor and then she was dxed with MS.
Originally Posted by Wallis86
My dad jokes that I have "Wallis" disease since I clearly have something, but no one knows what!
Thanks for the info again. I am going to try and get an appointment asap on monday with her. I read your last post before taking my afternoon nap, and it really got me thinking. My current neuro constantly mentions to me that it doesn't matter if they don't figure out the name of what's wrong with me if they can just treat the symptoms. It always upsets me so much to hear him say that, because I don't think he could possibly understand how mistaken he is in thinking that. I don't think he can "get it" without going through the uncertainty himself. At this point, I mean it when I say I don't care what I am sick with, good or bad, I just want to know what it is. I can't express the frustration and uncertainty that goes along with having a progressing neurological disease without knowing what it is, how fast it progresses, how disabling it is, etc. I get the same kind of response from my father about it too, and I just don't think its possible to understand what it's like. I'm really tired of every aspect of my medical life being a mystery, nothing is cut and dry with me. I'm sitting here, the only person in the universe who can't wait to develop full blown type 1 diabetes because it will be easier than what I go through right now with my blood sugar... also a mystery and a complicated illness. I'm so tired of all the mystery! I hope one day diagnosis will get much more advanced so these things don't happen to people any more.
wallis, I feel so bad for you. Reading this thread makes me realize how lucky I am when it comes to my doctor and my MS specialist..both of them care alot about me..
Your doctor doesnt sound like he really wants to know whats wrong with you, and is trying to placate you by treating your symtoms...thats old school and not a very good thing to deal with, in your situation. Please do make that appointment, and try to get some answers...you deserve them!
I hope you get squeezed in to that doctor's appt book. I like my doctor, but I don't know him well--I'll see a lot of him in two weeks when I have all my follow-ups. Still, I wish my MS doctor was Dr. House from TV!
I can't believe your doctor said it didn't matter what the disease is, that's horrible. If my PCP had thought that way, I would still be in LimboLand. Even if you don't want to use the MS drugs, you should still know all your options.
I have a mystery blood sugar illness myself, by the way! I'm glad I'm not the only one. Please keep us updated, and let us know when you get in with the good doctor!
Avonex started 11/07,
Stopped 4/10 due to no insurance.
Wallis, your post and then Nikki's response made me tear up. I FEEL you, Wallis -- so many people here do. If anyone here can help give someone the strength to forge ahead -- and the guidance about how to do it, it's worth every minute we spend on the board. Your neuro's attitude makes me think that it might ultimately be time to see someone else. You've got more of this road to travel and bigger fish to fry before you make that decision but it might turn out to be something to really consider. Regardless of anything right now, I do hope you eventually find good doctors in your neck of the woods -- I do hate that you're shuttling back and forth so much.
Listen, I can't guarantee that Dr. M. will be able to figure out what's wrong with your eye -- I HOPE she can but at the very least, I hope that she will be able to give you a clue and some guidance. That is what I love about her -- she will share her knowledge and exchange thoughts with you. My PCP will do the same thing and he will admit when he doesn't know something and seek to help me solve the mystery. He picked up the phone and called my MS specialist (who he did NOT know) himself about a weird possibly MS related rash I had after the doctor did not respond to ME. He is also the one who sent me to Dr. M. and that referral (after my bad experience with the other neuro-op at NYU) put me on a much better path. I had felt uneasy and insecure about the NYU neuro-op based on his behavior but I didn't even realize how MUCH I didn't like him until I got to someone better! (Kind of like hitting your head against the wall and realizing how how much it hurts only when you stop, LOL.) My "gut feelings" toward doctors since my MS dx has been on high alert. I think maybe that's what you did after you read my post, Wallis -- let your gut commune with your head!
One doctor with a clue, Wallis. JUST ONE. Keep on looking and we will try to give you strength to do that.
Thank you everyone who has replied. It is SO nice to find people who know what I am going through and where I am coming from. It's annoying that other people can't understand why I don't like my current neuro. They keep telling me that "everyone is doing their best, they just can't find the answer right now", and although that's possible, it's just not good enough for me. It can't be that I have a severely disabling disease that doesn't show up on tests. Any disabling disease should show up SOMEWHERE. I'm just so tired of hearing "I don't know", or "Well at least we've ruled out the bad stuff". I hate that the most since to me, they've only ruled out the bad stuff they know about, and they haven't even ruled out everything, they just haven't ruled it in.
April, what is your mysterious blood sugar issue? I've been told I may have early type 1 since one endocrinologist I know had this before getting type 1, but it presents as severe, uncontrollable hypoglycemia (mostly, but with some highs up to 300s) every half hour to an hour. It's horrible and I can't wait for my pancreas to die, as weird as that sounds!
Again, thank you all so much for being there and understanding. I will keep you updated on my appointments, only one week until the MS specialist!
Wallis, do you know about Latent Autoimmune Diabetes or know if you've been tested for it? I just came across some interesting information about it. It's not the same as Type 1 or Type 2 -- one article I read actually referred to it as 1.5. This actually seems to often be a "mystery diagnosis" -- apparently it can be misdxed as Type 1 or go undxed for a long time.
On a related endocrinological note, I also wonder if incidents of low blood sugar are what's causing your seizures.
Yes, I know all about LADA, and it would kind of be what would be happening to me if it ends up that I get type 1. LADA is actually type 1, its just a slower onset that presents early on like type 2, but its completely autoimmune. As far as the seizures go, I know those are not blood sugar related since they are not "true" brain mediate seizures, while blood sugar seizures are grand mal seizures, and cause unconsciousness. Additionally, I usually check my BG after an episode and I'm never low enough to seize. It would be easy though if that was it! I work at a diabetes camp and with a service dog organization specializing in hypoglycemia alert dogs, so incidentally, most of my friends are T1 diabetics. Just ironic that after knowing them I start having issues! I'm actually very active on the diabetes boards here since I am pretty immersed in diabetes and know a fair amount about it because of my own life. The seizures are definitely neurological in nature, they just of course don't know what exactly is causing them. Sigh.
I haven't been on the boards for a while so I am catching up. I sure have missed a lot. I had a bad relapse and I am finally able to read. I see you live in California, and am curious why you have to fly to NY for your testing. Sorry I don't mean to be nosy but you could drive to az and go to barrows or the mayo. That's a lot of money to travel for dx. I hope I'm not out of line.
Wallis, I didn't realize you have an appt on Monday, that's great news. I hope you get some answers soon. I'll be looking for your update on your appointment!
I've been tested for diabetes four times since 2002, and I don't have it. I've had the fasting blood sugar blood tests. I can't remember exactly what they're called, but it's where you fast, drink the nasty sugary stuff, give blood, give a urine sample, and repeat a few times. My blood sugar has always been borderline or very low. I don't know much about this, but it may be why I used to faint all the time--I haven't fainted in quite a while. But when I'm hungry, I get hostile--really hostile, which is not me! I also get shaky and lightheaded. I don't have to be very hungry to get like this, and I eat several times a day to avoid it. The three meal a day routine will never work for me. My father is exactly the same way. I haven't pursued this, and I've just learned that I have to eat a lot more. I wonder if it has something to do with my metabolism. My father and I can both eat whatever we want and not gain a pound; we're both very thin. We both have voracious appetites. If I get sick and miss a few meals, I will lose at least 5 pounds, which is way too much for me. My doctors have checked my metabolism too, several times, and it's always normal. My thyroid is just fine. Very strange, but my present doctors do not seem concerned about this at all.
Good to see you Hotflash! I'm sorry about your relapse but I'm glad you're feeling better.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
I have the weight loss problem to. If I dont eat at least a couple meals a day I will lose 5 pounds. I am thin too and it bothers me since it can take months to put it back on. I have been that way my whole life. My dr said he was not concerned about it because that was normal for me. He did say however that if I lost weight even while eating or started to gain weight then he would be more concerned because that would be abnormal for me. That's why your dr isn't worried.