As I am sure you all know, I have had some type of neurologic issue for the past 14 years. In that time I have seen 6 different neurologists who have come up with multiple different diagnoses...all of which have been found to be erroneous because of genetic test results or because of the progression of my symptoms. I recently decided to try my 7th...and FINAL...neurologist. If she can't figure out the problem, then I'm done! I will just live with it and pray for strength to deal on a daily basis.
Anyway, the blood tests that this doctor ran came back with an interpretation from the doctor at the lab that my slightly elevated result would be consistent with Myasthenia Gravis with corresponding clinical picture. I was thrilled. FINALLY! The clinical picture online sounded like my symptoms so I thought we had finally found a diagnosis...and subsequent treatment. However, when the new neurologist saw the results, she doesn't think I have MG because my elevated result isn't "high enough". Okay, another conflicting diagnosis. But she DOES think I may have some type of mitochondrial disorder. Since the treatment for mitochondrial disorders is fairly innocuous (high dose vitamins) and the testing is invasive (muscle biopsy), she suggested I begin the vitamins in the hopes they may help me. Sounds good to me! Fairly benign vitamins and no surgery!
Yesterday I went to a couple of stores to price out the vitamins. OMG! The highest Co Q-10 I could find at the drugstore/food store was 200 mg for $40.99/80 ct bottle. I need to take 1200 mg a day. Like I said....HIGH dose, lol. I found it at CVS for B1G1 and I had some CVS coupons. The L-Carnitine is $19.49 for (30) 500 mg. pills. I need to take 1000 mg a day. This was also B1G1 at CVS.
So, after B1G1 for each type of pill, $4.00 off applied to my CVS card because I swiped it when I entered the store, a CVS coupon for $3.00 off vitamin purchases, a $2 manufacturer coupon for one type of pill and a $1.00 manufacturer coupon for the other...I paid $50.48...and SAVED $70.72. AND THIS IS ONLY 13 days worth of pills of the Co Q-10 and 15 days of the L-Carnitine! SOOO......Approximately $121.00 every two weeks if I don't happen to have as many "money off" and "coupons" as I did this time!
Holy Moley! Guess I am going to have to tighten that frugal belt even more. BUT, IF IT HELPS IT IS WORTH EVERY SINGLE PENNY...and then some! Dear Hubby and I started looking for cheaper "bulk purchase" prices online, but we don't want to put out the money until we are sure she is going to be keeping me on it. Thankfully, I got one of my diabetes medicines free at ShopRite. Every Little Bit Helps!
ETA: DANG! I must have been REALLY upset when I was doing my calculations, lol. I only calculated the dosage out for ONE bottle of each medication (I got B1G1!). So I have enough for a MONTH. Not quite so bad when I say $121 a month for the pills. Whew!
Lin, well done for finding the best price for those meds ! I do hope you find they help you and this LAST neurologist is actually helpful too.
ReplyDeleteAll the best, Rinty x
Thanks, Rinty! The kicker is that they are not covered by my insurance, nor can I put them through my flexible spending account. But, if it works...totally worth it. Keeping my fingers crossed!
ReplyDeleteI need a lot of Vit because of health issues. You can get good prices with buy one get one free deals. Have you gone to Dr. Weil's site for perhaps some Homeopathic help. Also Dr. Mercola's website may, I say may, offer some incite. I completely changed the way I eat and live 8 years ago because of a health crisis. Long story, but I live a very different life now. It has changed my life to say the least. I eat, sleep and do just about everything differently now. Check out Dr. Weil, he is an MD that is well respected and knowledgeable.
ReplyDeleteThank you, GranChris! I will look into both of them!
ReplyDeleteYou are right, if helps it will be with every penny! I hope you can find them cheaper though. Yikes!
ReplyDeleteAfter so many years of difficulties...that are worsening over time...I would pay just about any amount to have some improvement. As I told the doctor, I don't need a definitive "name" for what I have, nor do I have to have a "cure", as long as they can give me some symptomatic relief! This past weekend was horrible. My legs were so weak them kept "collapsing" on me and several times I just caught myself as I headed to the floor. I tried to cook dinner and my arms were so weak I had to keep dropping them to my sides. Sometimes the weakness is so bad it feels like an effort to "breathe". It's not that I can't, I am just so exhausted physically that ANYTHING is an effort, lol. I told my rheumatologist that the exhaustion and fatigue was so bad it felt like I was "tired down to a cellular level". If I actually HAVE a mitochondrial disorder, I couldn't have been more correct! Then add the daily pain and the tremors...some days it is a bit much. But I am trying a new intervention and hopefully, God willing, it will make an improvement...no matter how small.
DeletePraying that this will work for you!
ReplyDeleteDo you have Costco or Sams? I've found Costco has good prices for such things. They have Kirkland brand Co Q-10 , 100 caps of 300 mg for 22.99. (and they go on sale). You can order online, too.
We used to have both memberships, but gave up the Costco in favor of the Sams. I will look online to see if they have it. Thank you!
DeleteSometimes you can talk to the vitamin company about blogging about your improvement using their vitamins for a disorder and you might get them free! It is worth a try hope you feel better!
ReplyDeleteThank you for such a WONDERFUL idea! I will look into that! Thank you, THANK YOU!
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