Newbie Lost and scared with multiple neuro symptoms

[tinglytoes]

Originally Posted by binx

thanks, cara and linn, for your responses. i really appreciate your taking the time to share your experiences with me.

cara: you know, you're the reason i had my b12 level checked. i found your story online about a month ago and it sounded so much like my situation, and it gave me hope for a solution. needless to say, i was pretty disappointed when i got the results that my b12 level was 900. i cried my eyes out.

after thinking about it more, i realized i wasn't fasting, and my dr. said that didn't make a difference; however, after doing additional research, i found out that it might. i have been taking 5000 mg of b12 here and there, but i think i will try to take it more regularly. some days it seems like it makes me feel better, but i don't know if it's a placebo effect or not. my MMA result was 153 with the range being 87-318. i don't know really know what that means since my dr. said my results were normal and haven't found much information about it online.

i have not been checked for lyme disease or celiac disease/gluten sensitivity. i was actually planning on discussing lyme with my neurologist during our next appointment, but what kind of doctor would i see to have gluten sensitivity identified?

linn: since posting the first time, i recently had a visual evoked potentials test to further rule out MS. my results were normal and now my neurologist says MS is off his radar. if i don't get any resolution soon, i just may look into going to the mayo clinic. i looked at their web site and they take my insurance, so there really isn't any reason not to pursue it.

thank you again,
binx

binx, your story touches my heart with empathy. The replies offered in support were right on.

For ten years I have struggled to deal with a condition which is secondary to a primary issue. It is rare, sneaky and very tricky to diagnose and nearly impossible to treat. I find only the self- education and advocacy will support my life and avoid going into crises. I cannot add much to what has already been offered except to suggest looking into nutritional deficiencies, along with the importance of B12 deficiencies.

If you have digestive issues, there might also be malabsortion issues. Have you ever taken a course of anti -fungals? Some connections are found with powerful medications that can manifest in long delayed symptoms. At any rate the process is one of hurry up and wait, for lackadaisical outcomes from the average doctor.

Few doctors are wired for unusual presentations. Knowing when it is futile with one Dr., leaves your energy freed up to keep going to try others. I have 15 doctors, one for every part, and have to do a bi- annual follow up with each, as my own case manager, to make ensure they are all on the same page. Becomes a full time job, along with a refusal to identify with the symptoms. A difficult dance indeed. Had to refuse the common labels which only make doctors feel better. Also their refusal to believe the symptoms are real, because I look fine.

Mark your symptoms on a calendar is one way to validate and record the often cyclic patterns. Hang in there and trust your process and love yourself all along the way, no matter how it looks to others. Avoid comparing, no one has the same path.

You are unique and deserve to be seen as an individual rather than a bundle of symptoms. Find an experienced therapist, which is essential to avoid too much reliance on your partner and avoids 'caregiver burnout'.

The best therapists I have found so far are oriented toward mindfulness training, as in Buddhist practitioners or mediators. If someone is resistant to the reality of feeling powerless to this process, then the feeling tone of being rejected, will inform you that they have not done this work and cannot really help you.

As with any helping profession, move on, it is not about you when the helpers cannot help, or about you when the helping hurts. Unless you stay in a toxic situation despite your instincts to the contrary.Trust this red flag if it shows up and take whatever steps you can to heal the emotional process of chronic debilitating symptoms.

This is an extremely valid learning process deserving of compassion no matter what else anyone thinks. honor your process and it will inform you of what you need to learn and do to help yourself.

i am a much better human being as a result of all of this and have become a help to others I meet along the way. The world needs heroes on their quest who can carry on. Do refuse to give up. Always!! Best wishes toward solutions and resolutions... Linda

[binx]

i appreciate everyone's replies so much. it helps with the sense of isolation that has become so overwhelming to me.

tinglytoes: i appreciate your insight into some of the more profound aspects of dealing with illness. i have indeed located a counselor who is very focused on mindfulness and has been helping me to cope with what's going on in my life. i had to find someone since, as you indicated, my husband has been on the receiving end of so much of my stress, on top of dealing with his own concerns about me. as supportive and wonderful as he is, it was critical that i have another outlet to spare him. you have a very wonderful outlook, and i think it is important to maintain that to survive. i am also scheduled to meet with a nutritional specialist next week who can hopefully give me some feedback as to modify my diet to better cope with my physical symptoms as well. it can only help at this point.

pabb: i agree--it does seem like my symptoms presented as a result of an injury of some kind, but the only thing i had done up to that point was care for my then 3-year-old. in addition to the brain and c-spine MRIs, i also had a CT scan and later an MRA to check for cranial vascular abnormalities as well. everything has come back normal with the exception of my cervical disc bulges and herniation. after doing a bit more research, i do have many of the symptoms of chiari malformation. in fact, that is the only diagnosis that actually seems to fit. i have seen 3 neurosurgeons and a neurologist--in your opinion, is it possible that all of them along with the radiologist who interpreted my scans missed it? if so, i will try to find another dr. who is a chiari specialist as you suggested.

thanks again.

it's a relief to have found this forum.

[tinglytoes]

Originally Posted by binx

i appreciate everyone's replies so much. it helps with the sense of isolation that has become so overwhelming to me.

tinglytoes: i appreciate your insight into some of the more profound aspects of dealing with illness. i have indeed located a counselor who is very focused on mindfulness and has been helping me to cope with what's going on in my life. i had to find someone since, as you indicated, my husband has been on the receiving end of so much of my stress, on top of dealing with his own concerns about me. as supportive and wonderful as he is, it was critical that i have another outlet to spare him. you have a very wonderful outlook, and i think it is important to maintain that to survive. i am also scheduled to meet with a nutritional specialist next week who can hopefully give me some feedback as to modify my diet to better cope with my physical symptoms as well. it can only help at this point.

pabb: i agree--it does seem like my symptoms presented as a result of an injury of some kind, but the only thing i had done up to that point was care for my then 3-year-old. in addition to the brain and c-spine MRIs, i also had a CT scan and later an MRA to check for cranial vascular abnormalities as well. everything has come back normal with the exception of my cervical disc bulges and herniation. after doing a bit more research, i do have many of the symptoms of chiari malformation. in fact, that is the only diagnosis that actually seems to fit. i have seen 3 neurosurgeons and a neurologist--in your opinion, is it possible that all of them along with the radiologist who interpreted my scans missed it? if so, i will try to find another dr. who is a chiari specialist as you suggested.

thanks again.

it's a relief to have found this forum.

Hi binx, How pleased to find you had read my note. I rarely submit anything. It's great that you have reached out and asked for support in the trial. I am relieved for you from this end. Yeah, the most couragous path is the one which admits to vulnerability and need in a conscious, co-creating, responsibe manner. Good luck on the long walk to wisdom....Linda