rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
What a wonderful group of people! I've been reading off and on all day. ... and (of course) I have questions. This is going to be long, and I apologize in advance, but I want to try to get it all in. Did anyone start with a hoarse voice as their first hint that something was wrong? ~ Actually for me it was a voice problem and a weird sensation in my chest/lungs area, especially after exercise and/or my head tilted forward. This was the autumn of 2006. At first I was treated for asthma (because of the breathing sensation) and for reflux due to the voice issues. But neither helped. The voice problems continued to progress more, but this was just the quality and ability to project, not forming the words themselves. I also have periods of extreme fatigue. I'm a flight attendant, and thought I was just jet lagged, and came back to domestic flying instead of overseas trips, but it didn't help. Eventually - many doctors later - I saw a vocal cord specialist that found that both vocal cords were bowed and partially paralyzed. She and a neurologist performed an EMG on my vocal cord muscles and there was damage to all of the muscles/nerves involved, but I do not know the specifics. I then underwent a procedure where the ENT doc injected my vocal cords with a plumping filler, similar to the product used for cosmetic purposes on our wrinkles. She did succeed in bringing my vocal cords closer together, but my voice did not improve. During this same time frame I was in the care of a rheumatologist, as I'd already had a pre-existing autoimmune condition and it seemed the only route as no other doctor could come up with anything. All of my bloodwork was negative for antibodies (Lupus, Sjogrens, Rheumatoid Arthritis, Myasthenia, Lyme disease) , however, I'd had Reynaud's for many years, and it was believed that I had Sjogren's (which is a condition where the excretory glands become inflamed and stop working) I'd had "dry eye" for a number of years (you know those Restasis commercials on TV where they say "certain" dry eye ~ well they're talking about the inflammatory nature of Sjogren's) ~ and I had dry mouth. My rheumatologist reasoned that even though I did not have dry nose, or other "regions" that it could still be the Sjogren's infiltrating my nervous system, and it explained the fatigue. I took Plaquenil, and Prednisone in varying strengths from the spring of 2007 until January of this year. In November, Methotrexate was added. Nothing helped, other than with the tiredness. In November (2007) my tongue started with the tremor, the edges quiver when I stick it out, and sometimes I can feel it "vibrating" especially underneath when I lay down at night etc; When I stick it out, it goes to the right. The edges are scalloped. In fact, this is how I found this forum, was I googling scalloped tongue and this forum popped up. My tongue has changed in appearance the last couple of months. I've begun having problems chewing, but only sometimes, and swallowing, but only occasionally. My cheeks get achy like when we laugh or smile really a lot. There is a twitch that comes an goes off and on all day (and night I guess) in my right cheek/jaw now. It is easily seen, its like something is moving under my skin back and forth. But its not constant, its on and off. I was sent to a renowned rheumatologist by the neurologist (who had also been betting on it being Sjogren's causing the problem rather than, say, Myasthenia)....I went the beginning of this January. This rheumatologist did not feel that I had sufficient dryness/damage to my body ~ that the Sjogren's was not severe enough to warrant the assumption that it had gone into my nervous system. As autoimmune conditions are inflammatory in nature he felt that if I were put on an even higher dose of prednisone (60 mg daily) for two weeks, that something should improve if it were indeed autoimmune, regardless of the name attached. Nothing did. My vocal cord doctor found after this latest tactic that I had damage to the soft palate as well, and at this point, and I began sporadic trouble breathing at night, and often am wakened with horrible headaches in the early morning hours. The doctor feels it is from lack of oxygen/co2 buildup, and I was supposed to go to a sleep clinic, but haven't done it yet.... sometimes I'm awake enough when it happens, its like a curtain just closing on a stage. Its like something drops down all at once in the back of my throat, and it wakes me up. Other times I become aware gradually in my sleep, I can feel that thing that hangs down in the back of the throat dragging against my tongue when I breathe out. But this does not seem to be constant. It will happen for a number of nights in a row, then either it doesn't, or I'm not aware of it.....Anyway, after the super dose of Prednisone did not help, I was gradually taken off of all meds. At first I got a lot more migraines, but even that has calmed down a bit. Sooooooo, my main rheumatoligst felt it was time I go somewhere else, and he sent me down to Johns Hopkins, but it was through the rheumatology department. He'd thought that I would be scheduled with a neurologist for my first visit, that it would be pre-arranged - but it wasn't. (sigh) I saw the head of rheumatology at JH last week, and he said ..... that I needed a neurologist. So now I'm in the process of trying to be scheduled there - again. He started the process, but the neurologist he thinks I should see there, only sees patients on Monday mornings, so it may take a while. While at Johns Hopkins I did also see a doctor who's specialty is dry eye, and she confirmed that my eye's are very dry, that they qualify to meet criteria for Sjogren's. She also found that the retina of my left eye has lesions on it, and it is felt that probably the Prednisone caused it, but maybe not, and either way have to see a retina specialist now too. .... I guess in a way its good that I've got the dry mouth, considering that I do choke sometimes when I swallow, I really haven't tried to analyze when it happens but its mostly just when I'm drinking water, or just plain swallowing, besides everybody does that sometimes, right? But I fear that this may have complicated getting a diagnosis, you know, dry mouth is not (that I know of) an indicator of any motor neuron problems, so I might be having two diseases running concurrently. As far as enunciation, just recently in normal conversation, sometimes it feels like I've had a few drinks, and I'm trying to talk like I'm sober when I'm not. Its like my tongue doesn't want to move quickly enough. There is no apparent pattern to when this happens though. Also, sometimes at night when I'm trying to fall asleep, my right hand has the fast twitch thing going on too. Its really only when I'm at rest, and is often but not always. I am so frustrated. I asked my regular rheumatologist what would be the next step if the nerve/muscle damage could be attibuted to the Sjogren's, and he said that we'd already tried all of the relatively safe medications, and that all that was left was the intravenous Rituximab, or intravenous Prednisone (the latter done in a hospital setting) either he felt carried too much risk for the little evidence to back up an assumption that the cause is Sjogren's. Plus, I now have the retina damage, so that is another strike against any more attempts with steroids. That about wraps it up. Does anyone have any insight or experience with what is happening to me? Oh, BTW, I'm a 52 year old mother of three, take care everyone and thanks for listening! Diane