I am posting here because I just need to vent these emotions whirling around inside me in a place my girl cannot see.
My daughter has incomplete transverse myelitis - she was diagnosed about a year and a half ago with a lesion between C2/C3. The right side of her body was going completely numb from her shoulders down. We have been through series after series of tests and the news is not positive. They are treating her for MS but still hold out the possibility of NMO (although those tests have been negative to date). She is taking Copaxone. We have been juggling symptom management.
The last MRI showed a "fuzzy/hazy" spot between C5/C7-8. She is now experiencing weakness and loss of sensation in her left and right side. The tingling on her left side has begun. We are headed into another episode with no knowledge of how she will come out the other side.
We are a very close family. I am a single mother of 4 daughters and she is my firstborn. As we careen down this slippery slope of doctors/medications/symptoms I find myself frantically searching for the brake. I want to stop this horrendous ride. I want to take her pain - restore her health - remove this burden and yet I find there is no brake, I have no control, I cannot absorb her pain. This knowledge causes me great pain.
I am crying as I type this, so close to a full blown panic attack which I know will not benefit anyone. Her normal is changing. My normal is changing. Our normal is changing. I am processing enormous amounts of grief in secret because I don't want to add to her already overwhelming life. There is no fix for this. There are no good words. I know all the cliches. We are in prayers. People are "thinking" of us... People offer us what they can to comfort, but this ride still sucks.
I do only what I can. I laugh with her. Celebrate the joys we can find. I love on her. I tease her like nothing is wrong. I help her up steps. I carry her groceries. And when it comes time I will load her chair and get her a smartass license plate for it. And every time I see her eyes light up and her burden temporarily forgotten I will rejoice in my success.
She is my girl. Chronic illness doesn't change that. I am not special - lots of parents are on this ride for many different reasons. I never wanted to identify with them but I do. My heart is shattered and still it beats as I hide behind my Lets-be-strong-positive-attitude.
I am a mom. I am a caregiver. This is my turmoil.
Caregiver Turmoil
Re: Caregiver Turmoil
Welcome to ThisIsMS Mom & caregiver.
Re: Caregiver Turmoil
Hi,
There is often a viral or bacterial element that pops into MS discussions. The same thing happens with your daughters condition ( see - http://www.christopherreeve.org/site/c. ... elitis.htm ).
Has she been tested for EBV, chlamydia mycoplasma, Lyme, Borrellia or babesia? Has she had a uric acid test and what was her reading compared to the reference range. Are you able to get tests that look at nutritional deficiencies or a fasting amino acid test? They will highlight if she is lacking in the basic elements. The cause can be metabolic but it can also be a signature of an infection.
Has she been tested for anti-NMDA receptor antibodies ? (see http://www.biomedcentral.com/content/pd ... -7-948.pdf and http://www.antinmdafoundation.org/the-i ... ephalitis/ )
You are so right to care so much for your daughter. She is lucky to have you. If she has not had the sorts of tests I mentioned above then you may have to be her champion and get them arranged.
Does she have other symptoms that seem unrelated? Has she, for example required a lot of antibiotics during life? They can be a sign of causes of inflammation and even past treatments can upset the gut flora in he body.
I hope they are a few things to look at.
Regards,
There is often a viral or bacterial element that pops into MS discussions. The same thing happens with your daughters condition ( see - http://www.christopherreeve.org/site/c. ... elitis.htm ).
Has she been tested for EBV, chlamydia mycoplasma, Lyme, Borrellia or babesia? Has she had a uric acid test and what was her reading compared to the reference range. Are you able to get tests that look at nutritional deficiencies or a fasting amino acid test? They will highlight if she is lacking in the basic elements. The cause can be metabolic but it can also be a signature of an infection.
Has she been tested for anti-NMDA receptor antibodies ? (see http://www.biomedcentral.com/content/pd ... -7-948.pdf and http://www.antinmdafoundation.org/the-i ... ephalitis/ )
You are so right to care so much for your daughter. She is lucky to have you. If she has not had the sorts of tests I mentioned above then you may have to be her champion and get them arranged.
Does she have other symptoms that seem unrelated? Has she, for example required a lot of antibiotics during life? They can be a sign of causes of inflammation and even past treatments can upset the gut flora in he body.
I hope they are a few things to look at.
Regards,
Re: Caregiver Turmoil
She was positive for EBV, negative on chlamydia and Lyme. I don't know about the others you mentioned. She was really sick with an unexplained illness when she was 17. It affected her spleen, liver, kidneys and acted like a severe case of Mono. But she never tested positive for Mono - months later she was positive for EBV. She appeared to be completely healthy when she had the attack that left her with a lesion on her spinal cord. I don't know what anti-NMDA receptor antibodies are but I will find out.
Now we have these flare ups. No reason - no trigger that we can find. Newest MRI showed no new lesions. But the symptoms are there none-the-less. The Neuro said that her lesion is so close to her brain stem that if it gets irritated it can cause these symptoms. So we are fighting a monster with no real definition - just real damage.
Thank you for your help - I still have a lot of research to do....
Now we have these flare ups. No reason - no trigger that we can find. Newest MRI showed no new lesions. But the symptoms are there none-the-less. The Neuro said that her lesion is so close to her brain stem that if it gets irritated it can cause these symptoms. So we are fighting a monster with no real definition - just real damage.
Thank you for your help - I still have a lot of research to do....
Re: Caregiver Turmoil
Hi,
You might struggle to get the tests you want. The doctors can have a habit of saying they don't think it's needed. The issue here is inflammation. As she has EBV there is every chance that she can react to a range of normally manageable bacterial infections. It can primes some cells. It's a case of building your knowledge and not just guessing.
I am a very big fan of a long term low dose of valacyclovir to control EBV. In my (seemingly endless) post you may pick up something that may make a light go off here- http://www.thisisms.com/forum/regimens- ... 24019.html
She is a brave girl and lucky to have you.
Regards,
You might struggle to get the tests you want. The doctors can have a habit of saying they don't think it's needed. The issue here is inflammation. As she has EBV there is every chance that she can react to a range of normally manageable bacterial infections. It can primes some cells. It's a case of building your knowledge and not just guessing.
I am a very big fan of a long term low dose of valacyclovir to control EBV. In my (seemingly endless) post you may pick up something that may make a light go off here- http://www.thisisms.com/forum/regimens- ... 24019.html
She is a brave girl and lucky to have you.
Regards,