It's been a challenging 19 days since I was last here. A lot going on with both my daughter and I.
My newest lab results for Vitamin D have come up to 41. This means I am no longer deficient. My new Thyroid level is in the normal range with my new dose as well. I did test positive for Celiac Disease and am waiting for an appointment for having a biopsy done.
At first when I got MY news I was numb then pissed then depressed. This pasted as I received much support from friends at ASAP and my family. Now I have to learn a new way of eating. It's better then having to deal with NL's and Chiari! So I will survive and hopefully be healthier.
Follow up appointment with daughter with her NL was good and bad. The good is he supported us seeing a NS for a second opinion at Tufts. The bad is he believes her Trigeminal is a symptom not the cause. He has set up an Autonomic Test and EMG. We go this Wednesday the 1st of April. She is also to have another set of MRI's in 3 months for a spot they found.
We did go to Tufts, the NS was very pleasant and helpful. He told Liz that he feels TN is a symptom not the cause. Hearing this from 2 separate Dr's leads us to believe it true. He was very detailed in viewing her MRI study. He did suggest she has Chiari 0, of which I had thought as well. Recommended her to have further studying done to determine where her pain is coming from. Also pointed out a small spot on the left side of her brain that needs further examining.
It gives me some comfort that 2 separate hospitals gave pretty much the same diagnosis.
We have seen much improvement with Liz, taking the anxiety/depression medication. She is much more relaxed and doesn't have uncontrollable crying. It will make getting a proper Dx that much quicker I think, because she is calmer.
It has been a lot to take in. Just when I think I am ready to handle more....I have had a few brake downs where I just cry. Seems like getting healthy is with in reach, then it gets snagged back a few yards. I wished I enjoyed drinking some nights! Don't want a hang over.
I just gotta keep my faith and steadily move forward. Some days are harder then others but the sun keeps shining which is a good sign!
Sunday, March 29, 2009
Tuesday, March 10, 2009
Spring is in the air
I am recovering very well. Still having trouble with the Vitamin D, haven't gotten my level into the normal range. My Endo doubled the dose and I am retesting in a few weeks.
The CM seems to be very much under control. Each week I am able to do more activities, carry more weight. My driving is back to where it was way before all this started, no more panic attacks or near fender bumping in parking lots!
My daughter has had her MRI, has been dx with TN. The medication is really effecting her in a negative way, she sleeps most of the day. It has not controlled the pain even going to max doses. I have her an appointment at Tufts with Dr Yao, he is the assistant professor to Dr Heilman. We go the 24th of this month. We are hoping she is a candidate to have Micro Vascular Decompression, by her MRI the V, VII and VIIIth nerves are involved.
My wonderful son in law brought home a puppy....his name is Reese. He is a lab/pitbull mix. What a handful he is. Loves to run and play. He keeps me going all day long. With the weather getting warmer we have started walking. He is very good on the leash and I so enjoy walking again, so I have made HIM part of my rehab! My little motivator!
The new PCP seems to be working out well. He has been very helpful so far. He very much cares about Liz and helping her with her many struggles that she has had to endure. FIRST Dr to tell her that most of her problems are due to the last surgery. Put her on Zoloft and this is helping.
While I was surfing the net last night, I found that this August in Boston there is going to be a huge convention of NS from around the world. One of the work shops is about CM. I am going to write to the Dr in charge of this workshop and request they spend some time covering HOW we are treated....I got plenty to write down. I would like to find out HOW I could get an invite and sit in on that workshop.....guess I got some work to do there.
I hope all my fellow CMer's are getting ready for spring! It has been a very long hard winter!
The CM seems to be very much under control. Each week I am able to do more activities, carry more weight. My driving is back to where it was way before all this started, no more panic attacks or near fender bumping in parking lots!
My daughter has had her MRI, has been dx with TN. The medication is really effecting her in a negative way, she sleeps most of the day. It has not controlled the pain even going to max doses. I have her an appointment at Tufts with Dr Yao, he is the assistant professor to Dr Heilman. We go the 24th of this month. We are hoping she is a candidate to have Micro Vascular Decompression, by her MRI the V, VII and VIIIth nerves are involved.
My wonderful son in law brought home a puppy....his name is Reese. He is a lab/pitbull mix. What a handful he is. Loves to run and play. He keeps me going all day long. With the weather getting warmer we have started walking. He is very good on the leash and I so enjoy walking again, so I have made HIM part of my rehab! My little motivator!
The new PCP seems to be working out well. He has been very helpful so far. He very much cares about Liz and helping her with her many struggles that she has had to endure. FIRST Dr to tell her that most of her problems are due to the last surgery. Put her on Zoloft and this is helping.
While I was surfing the net last night, I found that this August in Boston there is going to be a huge convention of NS from around the world. One of the work shops is about CM. I am going to write to the Dr in charge of this workshop and request they spend some time covering HOW we are treated....I got plenty to write down. I would like to find out HOW I could get an invite and sit in on that workshop.....guess I got some work to do there.
I hope all my fellow CMer's are getting ready for spring! It has been a very long hard winter!
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