Well I saw the neuro (Dr. K) last tuesday. It was not the best appointment but I guess, in reality, it wasn't the worst either. Nothing figured out, just a few things ruled out and a suggestion.
Mom and I were called into the room and he sat in the little adjoining room and I joked that he was googleing EDS then we hear typing lol. He comes in and asks about my neck and tinglingn etc. He asked about tingling in my hands and I said that I did but it was hard to tell as I have also been diagnosed with Carpel Tunnel Syndrome. He immediatly asks when I had the EMG done and I said never, it was just diagnosed with a physical and history as well as it being very common in EDS and that if I need surgery for it, I will be the third generation to do so (mom had both wrists done as well as my grandfather, my nan had surgery too but I am not sure if it was the same issue). We then asked him if he had ever heard of EDS and he said that he knew it was a musco-skeletal disorder that didnt have neurological issues. I brought up the chiari, tethered cord, autonomic issues as just some of the EDS related disorders that are neurological in basis.
He then wanted to do a full neurological work up. Tunning forks, pricking the skin, rubbing something rough over my skin, checking my reflexes (he was very nice when he went to check the reflexes in my left knee and I quickly reached down to cover my knee and said no, when I explained about the bursa he said it was okay to skip the one joint (unlike the other neuro before)). He had me follow a light with my eyes and then started 'manipulating' my neck and kept asking if doing something caused tingling or any changes. I dont know how many times I told him that movement does not create any symptoms and most likely wouldnt becasue of the EDS (I had my full ROM almost the instant the knee imobolizer was taken off after surgery and had full ROM when I broke my finger). He checked my wrists which was a bit of a sore spot for me as he had just seen that I had my wrist wrapped up, we had discused carpel tunnel and the dislocations and let me tell you, his full physical work-up was not gentle in the slightest!!
He then took me into the small room and showed me my MRI scans. He showed me how there is no sign of chiari (very common in EDSers) and that yes I had a pretty bad herniated disc but it was not surgical at this point and the only treatment for it is to treat the pain that it causes. There was mild stenosis near the herniated disc but not that would cause problems and there were no nerve impingments along the spine (cervical and thoratic was scanned).
So there is absolutly no structural issue that is causing the sweatings. He also said that it was most likely autonomic but that he doesnt treat it. He suggested trying Klonopin (sp?) for the sweating but I would have to be very carefull as it could drop your BP in sudden spikes and cause blacking out with the low BP issues. He things my temperature issues are 'perceived' feelings and not 'actual' feelings. Like my body perceives that it is cold but my body isnt actually cold. He doesnt thing its the Hypothalomus (wow murdered that spelling!!) but never told us if anything could be done to check and make sure its a perceived thing and not a brain thing. Regarding the swallowing issues, he did another work up of my gag reflex and stuff like that and said he saw no reason for it and if it was worrisome to me that he would suggest an barium swallow done.
The strange and unsettling thing though was that he would not write down the name of the medication that he was suggesting or the dose (thankfully I have read enough online to know which medication he was talking about), didnt even tell us why he wouldn't perscribe it and made no suggestion at all of a follow-up appointment. When we asked again (you had to keep redirecting him as he was focusing on the herniated disc and not the sweating and possible other neuro issues) as to why I was only sweating from the waist up he gave the ultimate answer. Ready for this.... I sweat only above the waist because that is where most of the body's sweat glands are!?!?!?! We kinda took this as an answer until we got out and started thinking about it. I know for sure that when I get hot I sweat behind my knees, and my feet sweat as well as my legs. And when I get one of the weird sweats I don't sweat under my arms anymore than normal. By the sounds of it he just thought I was having 'hot flashes' for some reason. At this point I realized that he didnt really know what was going on so I just smiled and nodded a lot.
So, not much helped. However, I was so resigned about this appointment, figuring that he would have no clue what EDS was or what was going on with me that I was able to walk out of the appointment with dry eyes and then mom and I picked apart what he said for the ride home. So for now we aren't doing anything. I am going to stay on the SSRI med for another 3 - 4 months to see if it kicks in and if there is no help then I will stop it and try this new med. I figure there isn't much point to trying two new medications within a few months of each other and then not know which one (if any) is working. We have now ruled out any structural damage causing the sweats, it may be contributing to it but it is not the cause so at least we have crossed another possible cause off the list. I just wish we could circle that one cause so we could work towards a treatment and hopefully getting back to a semi-normal life. Also going to ask my internist if she thinks if there is a benefit for me to have the swallowing test done. I think I would like to have it done (even though I have heard its horrible) but it would put my mind at ease that there isnt something bad causing the decline and it would also serve as a baseline for later if it gets worse.
So now we are still up in the air. Even though I am not going to try that med until later (if I acutally try it, from what I have breifly read it's in the same class as valium! as if I don't sleep enough!) I still need to discuss it with a doctor. My internist (and now cardio) doesnt like perscribing non-heart related medications (she doesnt feel comfortable giving out medications that she is not up to date with, which I completely respect! I would rather that than some dr shoving unknown meds down my throat) and the reason that I am going to all these specialists is that my GP has already dropped the ball on this issue and I dont know if I want to rely on him for an issue he has no clue about. The one thing mom and I dont get is that we thought the body's nervous system was dealt with by a neurologist but this guy made it sound like that wasnt his area. I guess it's just back to the internist to see what the next step (if we even have one) is.
No comments:
Post a Comment