Question:
Thanks so much Hollie, Connie, blue, Adagio, Sarah and Nikki! Im so relieved after my doc. appointment but the icing on the cake (excuse the bad cliche and food referance) is to have all of you understand and relate to my frustration and elation! Yes, it is such a relief to have this validation and to have someone who is willing to listen and probe into my symptoms (a past doctor called them complaints. unprovoked vomiting and absence of natural bowel function, complaints.) And yes, this doctor could well be keying in just in time. Because if my body hadnt eventually failed me I am sure I would have failed it. This is no way to live. Of course, it is distressing that there is a disorder involved which will likely change the course of my life, but at this point I just want to know what it is. Im willing to deal with anything except NOT KNOWING. I think this is the first time in my life that I have asked for a label, asked to be classified…. And where does the anorexia fall in all of this? Well, let just say THATS where my brain comes into the picture. AAH! What a mess. meg Before you buy.
Response:
I went to see my internist today. He has concluded that I have a neurological disease but hes not yet sure what name to give it. Its likely Sjogrens plays a part as well as a host of other things. I have Sjogrens and have never heard of it affecting the brain….it primarily affects the mucous membranes. What soft of doctors are you seeing?
By neurological I mean ‘having to do with the nervous system’. While the nervous system stems from the brain its instrumental in whole body function. Im now seeing an internist, he is also a rheumatologist and an incredibly intelligent man. Yesterday he used the term neruological disease but in the past I have heard neuro-muscular disorder, unknown syndrome etc. The label isnt as important as the acknowledgement of the problem. Its something that is affecting my digestion, my vision, my mobility and coordination, sensations in my extremities…. the list goes on. I feel bad and finally someone is willing to find out WHY. This is why I was inquiring about Lupus, Im just trying to understand the full scope of autoimmune disorders. There are a handful of possibilities and Im just trying to acquire a bit of knowledge and vocabulary. And, I would welcome any input or opinion you have, Nikki, as I know youve educated yourself. meg Before you buy.
Response:
Hi Meg, i agree with Connie. Feels good to be validated, doesn’t it? Good for you for hanging in there and not giving up when it feels like you’re crazy just because no one wants to listen. Blue Before you buy.
Response:
I went to see my internist today. He has concluded that I have a neurological disease but hes not yet sure what name to give it. Its likely Sjogrens plays a part as well as a host of other things.
I have Sjogrens and have never heard of it affecting the brain….it primarily affects the mucous membranes. What soft of doctors are you seeing? Nikki "… lost in the darkness of my own circumstance, criticizing echoes leaving me awake in the night… the barrier and blockades that keep me safe and in control while I pretend that I am okay… "
Response:
Hold onto this man! Sarah Justice – When you get what you deserve Mercy – When you don’t get what you deserve Grace – When you get what you don’t deserve "Hunger hurts but starving works when it costs
Response:
I’m glad you’ve finally found a good Dr who will listen!! ~**HolliE**~
Response:
That must have felt so good to have validation by your doc, eh? It’s too bad that there is the possibility of a neurological disorder but at the same time it is good to have a specific thing to pinpoint and that then treatment can be started to remedy the situation. Nope, you’re not crazy… –Connie — "Starving the flesh wastes the spirit." –Kandis Elliot
Response:
Hi everybody (or nobody). I went to see my internist today. He has concluded that I have a neurological disease but hes not yet sure what name to give it. Its likely Sjogrens plays a part as well as a host of other things. It may be awhile before a final conclusion is made, but the main point here is that my doctor is finally listening to me, taking my symptoms seriously, showing great respect and compassion, and hes willing to pursue this. Ive had so many bad experiences with medical professionals, this was deffinately encouraging.
Great to hear about this! It’s great to be taken seriously by someone who can help. I’ve had a few professionals who took me seriously when it counted alot, and just at the crucial moment and I don’t know what my life would be like today were it not for those people. best of luck to you… Adagio
Response:
Hi everybody (or nobody). I went to see my internist today. He has concluded that I have a neurological disease but hes not yet sure what name to give it. Its likely Sjogrens plays a part as well as a host of other things. It may be awhile before a final conclusion is made, but the main point here is that my doctor is finally listening to me, taking my symptoms seriously, showing great respect and compassion, and hes willing to pursue this. Ive had so many bad experiences with medical professionals, this was deffinately encouraging. Thats all. meg Before you buy.
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