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!
Tuesday, February 3, 2009
Fears and challenges
I can not remember when it started. It seems to have been for sometime. She has always been achy in the neck, daily head aches, trouble sleeping. When we lost power in December I think is when it really started to show.
I am speaking about my youngest, Liz. She is 22. We have made several trips to the ER since Dec 26th. Now we go to a NL this week. We are not sure what is going on, her CT shows Cerebellum hanging like all of us CMers. We won't jump to a conclusion till she gets a full set of MRI's. Her face on the left side is very painful with shocks then numbness. Worries me she could have Trigeminal Neuralgia.
The only thing to come of ER trips is the Dr saying get her to a NL asap, we can not properly care for her.
She has had her first appointment with a NL of my choice. So glad he was taking new patients. He has ordered MRI's to check for CM however, he did make a Dx of TN... She is now just 1 week on taking medication and her daily pain has dropped but not gone. Even just the cold air flares up her face.
It is a whole different set of worries when it's one of our children. I have started her on the right path of getting the proper help.....I hope! The NL did a whole set of blood work including Vitamin D, Vitamin B12 and her Thyroid. I should be able to get these results today. Started gathering all her records for a file. We will take it one day at a time!
Now I have to come to terms with my biggest fears, that she too has CM and the challenge of caring for her! I am putting my faith in God to help us all through this. Faith he will give me the strength to support and care for her while continuing my own recovery.
I am speaking about my youngest, Liz. She is 22. We have made several trips to the ER since Dec 26th. Now we go to a NL this week. We are not sure what is going on, her CT shows Cerebellum hanging like all of us CMers. We won't jump to a conclusion till she gets a full set of MRI's. Her face on the left side is very painful with shocks then numbness. Worries me she could have Trigeminal Neuralgia.
The only thing to come of ER trips is the Dr saying get her to a NL asap, we can not properly care for her.
She has had her first appointment with a NL of my choice. So glad he was taking new patients. He has ordered MRI's to check for CM however, he did make a Dx of TN... She is now just 1 week on taking medication and her daily pain has dropped but not gone. Even just the cold air flares up her face.
It is a whole different set of worries when it's one of our children. I have started her on the right path of getting the proper help.....I hope! The NL did a whole set of blood work including Vitamin D, Vitamin B12 and her Thyroid. I should be able to get these results today. Started gathering all her records for a file. We will take it one day at a time!
Now I have to come to terms with my biggest fears, that she too has CM and the challenge of caring for her! I am putting my faith in God to help us all through this. Faith he will give me the strength to support and care for her while continuing my own recovery.
Wednesday, January 14, 2009
A new year.......Working on my goals
Well I started out the New Year with a list of things I want to change....mostly a new family doctor. Which by the way is no easy task. For the medical field is all about BUSINESS.....and patient comes in second! So sad.
I had my 3 month check up with the wonderful Dr Heilman. I am healing wonderful and remain Head Ache free. I do have lingering nerve pain in my scalp on the right side. So I have decided to go back on Gabapentin in a low dose. Ya this has helped where as before surgery it only increased pressure in my head, weird but I like the relief from the feeling my hair is being pulled out one strand at a time. Dr. Heilman requested me to stick with Dr. Mullins @ St Vincents as my NL. Not to use Umass. This is because he has a working relationship with Dr. Mullins and they can communicate about my progress. I am OK with this! I go for a check up on the 28th. He also supports a new PCP.
I did finally find a new PCP, went for an interview and really liked him. He wants to help me find the cause for so many Autoimmune issues and the now solid Lymph Node by my ear. Yesterday I made the switch....with my insurance.....have my first real appointment with the new dr for the 15th of January. I would like to get these things done by spring so I can get to gardening! The part I am worried about is transferring medical records, for this is up to me...I don't want to call but I guess I will have to.
It can at times feel like a full time job just to keep your health in order when you have disorders and or diseases. I really don't think it's suppose to be this way. This is what I am hoping a new PCP will address.......just tell me what I have and fix it! I want my energy back! I don't want to look 42 but feel 72.
My oldest son is going to his new dr today.....He called to tell me that he was having his Thyroid and Vitamin D checked for me! Really it's for HIM....But I am glad he is doing this. My mother also went and had her blood work done for the B and D. Her bone scan came back with Osteopenia which is pre Osteoporosis......I will bet her D level is low too.
So my mind wants to know if.......medical research has proven that more then 75% of all people in Ma could be Vitamin D deficient and that in New England we have high counts of Lyme Deer Ticks.........WHY on earth are these not just tested for when we go for an annual check up! I mean really! Would they much rather us on anti-depressants? I can almost understand not testing for Lymes but the D I can not.
Seems like the medical field has lost touch with US. It's "can I have your insurance card please". I wished they would just look at us and our charts and treat....I mean TREAT us as if we were their patient, not just a few letters and then a few numbers on a manila folder that gets shoved into an over stuffed wall of other numbers and letters..... Wouldn't it be a surprise if they asked how is your family!!
My goals for the first quarter of 2009: Start a Chiari Support group in Ma., sharing experiences with others locally. Spread Vitamin D awareness and have my whole family tested. Start a new relationship that is effective for my husband and I with a new family doctor.
I had my 3 month check up with the wonderful Dr Heilman. I am healing wonderful and remain Head Ache free. I do have lingering nerve pain in my scalp on the right side. So I have decided to go back on Gabapentin in a low dose. Ya this has helped where as before surgery it only increased pressure in my head, weird but I like the relief from the feeling my hair is being pulled out one strand at a time. Dr. Heilman requested me to stick with Dr. Mullins @ St Vincents as my NL. Not to use Umass. This is because he has a working relationship with Dr. Mullins and they can communicate about my progress. I am OK with this! I go for a check up on the 28th. He also supports a new PCP.
I did finally find a new PCP, went for an interview and really liked him. He wants to help me find the cause for so many Autoimmune issues and the now solid Lymph Node by my ear. Yesterday I made the switch....with my insurance.....have my first real appointment with the new dr for the 15th of January. I would like to get these things done by spring so I can get to gardening! The part I am worried about is transferring medical records, for this is up to me...I don't want to call but I guess I will have to.
It can at times feel like a full time job just to keep your health in order when you have disorders and or diseases. I really don't think it's suppose to be this way. This is what I am hoping a new PCP will address.......just tell me what I have and fix it! I want my energy back! I don't want to look 42 but feel 72.
My oldest son is going to his new dr today.....He called to tell me that he was having his Thyroid and Vitamin D checked for me! Really it's for HIM....But I am glad he is doing this. My mother also went and had her blood work done for the B and D. Her bone scan came back with Osteopenia which is pre Osteoporosis......I will bet her D level is low too.
So my mind wants to know if.......medical research has proven that more then 75% of all people in Ma could be Vitamin D deficient and that in New England we have high counts of Lyme Deer Ticks.........WHY on earth are these not just tested for when we go for an annual check up! I mean really! Would they much rather us on anti-depressants? I can almost understand not testing for Lymes but the D I can not.
Seems like the medical field has lost touch with US. It's "can I have your insurance card please". I wished they would just look at us and our charts and treat....I mean TREAT us as if we were their patient, not just a few letters and then a few numbers on a manila folder that gets shoved into an over stuffed wall of other numbers and letters..... Wouldn't it be a surprise if they asked how is your family!!
My goals for the first quarter of 2009: Start a Chiari Support group in Ma., sharing experiences with others locally. Spread Vitamin D awareness and have my whole family tested. Start a new relationship that is effective for my husband and I with a new family doctor.
Wednesday, December 31, 2008
It's been awhile......
I hope all who read or follows are doing well! I have been battling fatigue and bone pain.......why??
Another area that our medical field needs education! Vitamin D!! With feeling so fatigued my mother insisted I have my Vitamin D level checked. I never even knew we had a blood test for this or that it needed to be monitored.
I am very deficient, now taking 50,000U per week for 8 weeks. I have been on the dosage for 4 weeks and am now noticing that the severe bone aching is nearly gone! Still very angry that I had to ask for the test!
I am trying to read everything I can about Vitamin D and my goodness........it answers so many questions about the chronic fatigue, deep muscle and bone aches! But it does not answer WHY. Why do our doctors not test this more?
In finding this out, on my own! I have had to do another search. For a new PCP! Why? Because his office missed........my Thyroid, Lymes and now D Deficiency. WHY? I have been with him since 1995 and I feel my investment into his practice cost me years of my own health.
January 1, 2008 I promised myself that by September 2008 I would have my CM addressed....missed by a few weeks but I got there! Now for 2009! I will find the right PCP that will care for me and my family.
I am waiting for a new PCP before I further investigate what if any damage has been caused by being Vitamin D Deficient. I will have a bone density test done.
When I got my lab results I called my Endocrinologist, she wants me in HER office for the follow up blood work, informed me with my levels being that low I should be taking the 50,000U weekly for life! I trust her! She will monitor this.
My other promise for 2009 is to make sure my whole family gets tested. Tested for all 3....Lymes, Thyroid and D.
My advice is for anyone with nerve pain.....get your Vitamin/Mineral levels checked.
Another area that our medical field needs education! Vitamin D!! With feeling so fatigued my mother insisted I have my Vitamin D level checked. I never even knew we had a blood test for this or that it needed to be monitored.
I am very deficient, now taking 50,000U per week for 8 weeks. I have been on the dosage for 4 weeks and am now noticing that the severe bone aching is nearly gone! Still very angry that I had to ask for the test!
I am trying to read everything I can about Vitamin D and my goodness........it answers so many questions about the chronic fatigue, deep muscle and bone aches! But it does not answer WHY. Why do our doctors not test this more?
In finding this out, on my own! I have had to do another search. For a new PCP! Why? Because his office missed........my Thyroid, Lymes and now D Deficiency. WHY? I have been with him since 1995 and I feel my investment into his practice cost me years of my own health.
January 1, 2008 I promised myself that by September 2008 I would have my CM addressed....missed by a few weeks but I got there! Now for 2009! I will find the right PCP that will care for me and my family.
I am waiting for a new PCP before I further investigate what if any damage has been caused by being Vitamin D Deficient. I will have a bone density test done.
When I got my lab results I called my Endocrinologist, she wants me in HER office for the follow up blood work, informed me with my levels being that low I should be taking the 50,000U weekly for life! I trust her! She will monitor this.
My other promise for 2009 is to make sure my whole family gets tested. Tested for all 3....Lymes, Thyroid and D.
My advice is for anyone with nerve pain.....get your Vitamin/Mineral levels checked.
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