Autoimmune diseases is one thing I can not control. The myositis, the sjorgens, Hashimotos Encephalopathy, Hashimotos Thyroiditis, Autoimmune colitis, Raynaud's disease, etc. For which brought on small and large fiber neuropathy. And not to mention the lupus and scleroderma that hangs over my head.
But now doctors I can control. I can not believe I have ran into a bunch of petty, self serving neurologists. I was told one time from a RN that neurologists are a different breed and she is right on this account. My regular Neuro moved in Dec to a Clinic/Hosptital 5 hours away. I really cared for her. Not only is she good she is nice and caring. Well as I went to the normal clinic, I was treated strangley thought it was my own imagination playing over time. Well decided to take a long trip to see the neuro I trust with my life, as I am having such odd new worrisome symptoms. So on I went, and of course I still love her, she ordered a EEG, Spinal, blood work, close to home, she said to go her old clinic and have the EEG done, for which I did, and again was treated strangley. My Doctor kept waiting for the results, (been 2 weeks) so I emailed the clinic and explained that I will need a local doctor as well as Dr. Santillan, and then called to set an appointment. WELL this is what I got. I was told that I can not see both, it has to be their clinic, or drive to the old neuro Dr. Santillan but I can not have it both ways. I was so furious, and not feeling well, started to cry(for which I hate myself for) lol I hate to be weak, but I was angry, I cry when angry. I said that is fine then take me off your patient list I will see Dr. Santillan instead, five hours away. But now they still have the EEG results that I need. So now Monday I will have to call and make a stink and demand records. I can not believe this my doctor was well loved at her old clinic, yet they are being petty, and not willing to work with her as a team for my well being. Like she said in her last report that she left for next attending doctor, that I am a complicated case. Nothing to be proud of, but I am. I hate to go through this Monday, as I do not need anymore stress in my life. I am in a flare right now, colitis is flaring, my legs are bad, my gate is awful, balance is awful, walking into walls, and I have to go for the spinal tap Monday afternoon, YEAH. Did I mention I hate spinal taps. lol. Well anyway history for old clinic, they sure do not take their patients well being in mind over their stupid pride.
Now good things. :) Saturday in Chicago, I met with several other Hashimotos Encephalopathy patients that I have interacted with daily for a few years on facebook but now got to meet face to face. It was so nice to see them in the flesh,. We then had my son who is a film maker, come and do a documentary on the book, and the authors, (Nicola and myself) and a few of the HE sufferers. He and a friend who is a director worked for six hours straight interviewing and filming,. It was amazing. We are hoping to use this as an educational piece as well as pieces going towards our longer documentary that will be coming up. It went so well, so excited.
Well time to go, been so tired again lately. No amount of sleep is enough.
Sunday, June 29, 2014
Sunday, June 15, 2014
More Tests Here I Come
June 12, 2014 I met with my neurologist that I went 5 hours to go see. (one way that is) lol. And I was not disappointed at all, so glad I went. She makes me feel like I am in good, educated hands.
She feels that the sjrogrens could be crossing over the central nervous system and or the brain for which is causing me the bad tremors and jerking that I have been getting. She listens, I love this about her. She asked me to send copies of my records of Dr. Hermitanos my rheumy to her, and then I have blood work this week, and a sleep deprived eeg Tues to be done in Green Bay. I was advised to get a neuro I can work with in between appointments with her, for which will be every six months, or more if needed. But this way the one I have here she can work through also. So I have to swallow my tongue and go back to the clinic, and get a neuro who wont mind working with Dr. Santillian. They all know her and like her so I hope this wont be hard to do. She also agreed not to switch back and forth between two neuros with all the issues I have. She could not believe they even suggested that for me. Also may want another spinal tap, for which I am holding my breath, I hate them, but if I have too I have too. She mentioned epilepsy, MS, etc. I should bring my tape recorder so I remember it all. I also told her about the tremors in my tongue, she did not look, I think she knows me enough by now to know when I tell her something, it is something that is not to be taken lightly, because I never go in complaining about this and that. She also told me I have not just small fiber neuropathy but also large fiber neuropathy for which I was told is very rare too. So I guess I am full of rare stuff, lol, I wish If I was so rare I was worth something, right, like an old book? lol. Oh well.
The tooth came out on Tuesday and still hurts, for which I don't think it should, but it does, not terrible, but just there.
Dr. Santillan is going to try for the IVIG I believe but she said it is getting harder and harder to get approval from insurance companies. So we will see what happens if it is meant to be it will be.
Like a friend of mind says who has HE it is in God's Hands.
Katie and Bill came to stay for a few days this past week which was such a great visit, Meg and Sean came down and Nick, I am so lucky to have such wonderful Children. I could not ask for anything else in life. So very lucky. Scott your included too as is Amy and my Payger, lol.
Happy Fathers Day to all who are fathers in anyway, stepfather, friends, mentor, foster how ever you father, have a great day.
She feels that the sjrogrens could be crossing over the central nervous system and or the brain for which is causing me the bad tremors and jerking that I have been getting. She listens, I love this about her. She asked me to send copies of my records of Dr. Hermitanos my rheumy to her, and then I have blood work this week, and a sleep deprived eeg Tues to be done in Green Bay. I was advised to get a neuro I can work with in between appointments with her, for which will be every six months, or more if needed. But this way the one I have here she can work through also. So I have to swallow my tongue and go back to the clinic, and get a neuro who wont mind working with Dr. Santillian. They all know her and like her so I hope this wont be hard to do. She also agreed not to switch back and forth between two neuros with all the issues I have. She could not believe they even suggested that for me. Also may want another spinal tap, for which I am holding my breath, I hate them, but if I have too I have too. She mentioned epilepsy, MS, etc. I should bring my tape recorder so I remember it all. I also told her about the tremors in my tongue, she did not look, I think she knows me enough by now to know when I tell her something, it is something that is not to be taken lightly, because I never go in complaining about this and that. She also told me I have not just small fiber neuropathy but also large fiber neuropathy for which I was told is very rare too. So I guess I am full of rare stuff, lol, I wish If I was so rare I was worth something, right, like an old book? lol. Oh well.
The tooth came out on Tuesday and still hurts, for which I don't think it should, but it does, not terrible, but just there.
Dr. Santillan is going to try for the IVIG I believe but she said it is getting harder and harder to get approval from insurance companies. So we will see what happens if it is meant to be it will be.
Like a friend of mind says who has HE it is in God's Hands.
Katie and Bill came to stay for a few days this past week which was such a great visit, Meg and Sean came down and Nick, I am so lucky to have such wonderful Children. I could not ask for anything else in life. So very lucky. Scott your included too as is Amy and my Payger, lol.
Happy Fathers Day to all who are fathers in anyway, stepfather, friends, mentor, foster how ever you father, have a great day.
Tuesday, June 10, 2014
Trip to Old Neuro
Well tomorrow I leave for a five hour trip to see my old Neuro who left the area and moved on to Gunderson Lutheran Neuroscience Center. I did a lot of research on the teaching hospital and I am very impressed and encouraged in what I have seen. I already love my neurologist Dr. Santillan, it is just hard to get to a place so far away when I am not allowed to drive except for local, and my husband has macular degeneration, so I have to depend on my great friends that I have. And I do I have great friends, Thank God. I don't know what I would do with out them. So a great long time friend is driving me and we will stay over night as my appointment is for 8:00 in the morning.
I am hoping Dr. Santillan can shed some light on some new and worry some symptoms of tremors, Tremors that even affect my tongue. Very weird. My arms will tremor so bad, I can not control my fingers to type, It will last for quite a long time, I have to just have to sit because my legs will feel like they will give in. But my tongue is all the time. I did a little research on this and of course it can be symptoms of many things such as ALS for which I am sure it is not, MS. MG. etc, but it could also be my hashimoto's encephalopathy, or small fiber neuropathy. So I understand why my rheumy wants me to start IVIG. But it would have to come through the neurologists office as he has told me, because of the severity of those diseases would help to be approved.
As luck would have it for me, lol, I broke a tooth Fri night, sooooo went all weekend with a broken hurting tooth and mouth. Had the tooth pulled today, so hopefully it wont be too painful when I go tomorrow. The dentist did say because of the Sjrogrens I have it will make my teeth and especially my gums deteriorate easier so to be aware. Gave me special toothpaste for gums. So this was new, I read where you have to be careful with your mouth but did not realize your gums. lol, Really dumb, right, lol it is part of my mouth. lol. Well I will say between the scar tissue yet from the lip biopsy's and the tooth being pulled, my mouth is one mess. It is bad when it hurts to even drink water.
I will be back to tell you about my appointment. I hope I have good news.
Have a safe and enjoyable summer.
Susie
I am hoping Dr. Santillan can shed some light on some new and worry some symptoms of tremors, Tremors that even affect my tongue. Very weird. My arms will tremor so bad, I can not control my fingers to type, It will last for quite a long time, I have to just have to sit because my legs will feel like they will give in. But my tongue is all the time. I did a little research on this and of course it can be symptoms of many things such as ALS for which I am sure it is not, MS. MG. etc, but it could also be my hashimoto's encephalopathy, or small fiber neuropathy. So I understand why my rheumy wants me to start IVIG. But it would have to come through the neurologists office as he has told me, because of the severity of those diseases would help to be approved.
As luck would have it for me, lol, I broke a tooth Fri night, sooooo went all weekend with a broken hurting tooth and mouth. Had the tooth pulled today, so hopefully it wont be too painful when I go tomorrow. The dentist did say because of the Sjrogrens I have it will make my teeth and especially my gums deteriorate easier so to be aware. Gave me special toothpaste for gums. So this was new, I read where you have to be careful with your mouth but did not realize your gums. lol, Really dumb, right, lol it is part of my mouth. lol. Well I will say between the scar tissue yet from the lip biopsy's and the tooth being pulled, my mouth is one mess. It is bad when it hurts to even drink water.
I will be back to tell you about my appointment. I hope I have good news.
Have a safe and enjoyable summer.
Susie
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