Mitochondrial Disease

2 Replies Updated



Conversation Starter

Catherine M. Says:


I was Dx with Mitochondrial Myopathy in 9/09 after much testing and labs and finally by muscle biopsy. I was recently told by my neurologist that there had been some research done revealing their effectiveness of this medication in helping to control the duration, intensity and frequency of muscular spasms and cramping, sometimes crippling in its active phases. I began this therapy and within just a few weeks I was having less intensive cramping, the duration was even for less amounts of time. It became more tolerable. It did not do much in controlling the weakness and fatigue I felt but any relief was greatly appreciated, The local pharmacies had to pool their supplies to fill my prescription, I guess my dosage was higher than the usual. It was in a word experimental. I was taking 75 mg every day,each month, my bottle would have varieties of the medication. different colors and inscriptions. The pharmacies stated it was because they got the pills from different stores to fill it, then last month, when i needed a refill i was told it was no longer available. I am completely disabled and living on just SSDI from which my medicare benefits are deducted, my parts c and d are also deducted, i live in subsidized housing, unemployed and unemployable. I was happy to be able to receive a medication that helped to control the pain only to discover that after just 4 months it is no longer available. I contacted my neurologist for alternate therapy options only to be told that a Dr. in the south who has devoted his entire career to researching mitochondrial disease had made the discovery that some Mito patients responded well to this treatment. My Dr. initiated it and it seemed to be having some measure of success and now I am no longer able to obtain it. I want to know why I am unable to get it and if you can make it available to me again.



Showing Replies 1 - 2 of 2 RSS Feed


Page of 1     Sorted By:
1
Verwon Says:

This website does not manufacture, nor make available any medications, it is an information only website.

I am sorry about what you are going through, it's terrible to see anyone suffer.


Do you happen to know any other information on it, such as who manufactured the medication you were trying?

Learn more about Leucovorin Details

There's nothing listed about it being used for such issues. It might just have been a trial to test it and see if it was effective and, if that is the case, it may be difficult to get again, until/unless it gets FDA approval.

REPLYSHAREREPORT
Was this helpful?     0     0  
2
Sharon Says:
via mobile

I need info on mitochondrial disease causes and treatments.

REPLYSHAREREPORT
Was this helpful?     0     0  


Viewing page 1 of 1     Reply


More Discussions:

Disease diognosis
Can mox 500 used for head ache.i am suffering from headache and some pain near my ear Headache happens before 4 days and... 1 reply
Ear disease
Side Effects Of Methycobal 500 ## Methylcobalamin is a nutritional supplement, it is a form of vitamin B12, it is often ... 2 replies
100%disease-cure
Dr.Sachin Verma of Applo-Calcutta & Dr.Nazrul Islam Of BIRDEM,Bangladesh prescribed me to apply each morning Propysa...
lyme disease meds not working
My daughter has been diagnosed with Lymes disease from a tick bite.The doctor has her on 3 different antibiotics, and so... 3 replies
What disease am i suffering from?
Why would someone be prescribed Saril, Rinifol, cyclopan and nupenta tablets? ## I am feeling throat problem. Meals have... 3 replies
FITTS disease
Hi I'm syeed bin ahmed I'm suffering from ''FITTS'' I was taking the tablets from 5yrs and the t... 1 reply
Heart disease medications
In 2009, I was diagnosed with minor heart disease with high cholesterol (203) and have been taking the following medicat...
crohns disease 4mg dilaudid does not work HELP!
Hi everybody I suffer from crohns disease and my levels of pain are off the charts sometimes, it gets real unbearable, I... 49 replies
Celiac disease/wheat sensitivity after prolia
Just updating my situation with severe diarrhea after Prolia shots. I have gone on a totally gluten free diet and what a... 2 replies
Chrons disease, ulcers, osteoperois, 2 knee replacements for
I have chrons disesae since i was 18 I am now 42 and the pain is umbearable i have had an ileostomy for it, i have ulcer... 2 replies


Post a Reply

No registration needed.
Simply fill out the form below.

 *

 *


 Optional, stays hidden.
Get notified when a reply is posted here.




4) Text Verification: *
Prevents SPAM.

Click here to show the question



This form will be submitted securely


TRUSTe

Discussion Thread Guidelines: Any participation in the discussion threads signifies your agreement with the Terms of Use and Privacy Policy. (1) Act civilized and be respectful towards others. No profanity, vulgarity or lewd / suggestive content is allowed. (2) Posts encouraging, facilitating, or seeking advice about the abuse of medications or other substances are prohibited. (3) Personal contact information (such as telephone numbers, email addresses, etc) is not allowed to appear on our discussion threads. (4) We do not allow our forums to be used for buying, selling, trading, or for the promotion of a product or service. (5) Posting external links to other web sites is not allowed without our prior approval. (6) We reserve the right to edit or remove content which we find objectionable to the community at our sole discretion.


Note: All times displayed are GMT - 7.

This information has been independently compiled and is for informational purposes only. It is not intended to be a substitute for medical advice from a qualified healthcare professional; nor is it intended to diagnose, treat, cure or prevent any disease. For more details please see the Medical Disclaimer. This page was last updated on 20 September 2019.

We are committed to your privacy.

Copyright © 2005-2019 All Rights Reserved. MedsChat® is a registered trademark of Limelight Innovations L.L.C. 9888 W Belleview Ave #5000, Denver, CO, 80123, USA