ANA Discussion Forum

AN Community => AN Community => Topic started by: paulinrio on April 06, 2017, 09:24:41 am

Title: mgus
Post by: paulinrio on April 06, 2017, 09:24:41 am
I had my acoustic neuroma surgery almost 4 years ago. I have now been diagnosed with mgus. I was just curious if any other patients have had the same situation. Thank you Paul Wasserman
Title: Re: mgus
Post by: ANSydney on April 06, 2017, 04:58:57 pm
Paul, Monoclonal Gammopathy of Undetermined Significance or MGUS appears to be quite prevalent with the chances of getting it depending on age; 3% (>50), 5% (>70) and 7.5% (>85). As you know, an acoustic neuroma is much rarer at about 1 to 2 per 100,000 per year. Even if someone with an AN got MGUS, this would be expected in about 1 in 20 cases. The better search is those that have mgus that also have an AN; this would be more indicative.

My brief search does not show any association between an AN and mgus.

Hope your mgus does not progress to something to be worried about.
Title: Re: mgus
Post by: paulinrio on March 21, 2018, 03:55:04 pm
Sydney, I apologize for not responding. Honestly, I have not spent much time on this site over te last year. I continue with a lot of balance issues and have been investigating alternative options. I live in Brasil, where care is lacking, but I am on an infrequent business trip in Central America. I am curious if you have ever heard of KAMBO. It is a treatment involving the use of the venom of Amazonian frogs and people who I have spoken to ,with other issues, have experienced great success with this approach. Just curious. I am in Guatemala, now, and return to Rio on Tuesday, when I will take new blood work to send to my oncologist at the Cleveland Clinic. I will investigate, for my curiosity, the people with MGUS, who may have AN. Thank you so much and again, sorry for the delay. All the best, Paul
Title: Re: mgus
Post by: chicagorose on March 23, 2018, 01:43:21 pm
I was actually diagnosed with SMM, the intermediate stage between MGUS and MM, several years before being diagnosed with AN. There is no correlation between the two.
Title: Re: mgus
Post by: paulinrio on August 28, 2018, 06:52:39 am
How are you doing?
Title: Re: mgus
Post by: paulinrio on August 28, 2018, 07:27:56 am
chicagorose---I have a question for you. If you feel uncomfortable answering it, no problem, but you arethe only person I have croassed paths who has both ot these conditions. I live in Brasil, notorious for poor medical care. Nine yearss ago, I was diagnosed with peripheral neuropathy, caused by a Vitamin B-!2 deficiency. My AN surgery was 5 years ago. Two years ago MGUS. I am having trouble with the posible connection of all 3. My neuropathy is consant. I was wondering if you also suffer from PN. Thank you. Paul
Title: Re: mgus
Post by: lilith on August 28, 2018, 09:45:44 am
Hi Paulinrio,

I have nothing scientific to add. I am Mexican, live in Mexico City and the health system is rubbish. In the public system they do not like to operate for ANA as their outcomes are poor (lots of severe facial paralysis). The private system is very expensive and cost as in the USA but with our salaries is impossible to afford. The doctors think that they deserve being millionaires, regardless of the outcomes.

I recently had a cerebral angiogram for another reason and developed a rare toxic response to the contrast that is sometimes called 'transient blindness'. The main doctor has left when I realised I could not see properly (I was sleepy for an hour). I called him and he sent his medical assistant to see me. The main doctor arrived to the hospital until 10:30pm (12 hours after I called him and I was in total panic with no explanations) and saw me no more than 10 minutes. In addition, I paid a higher bill than expected due to the complication). After this experience and others, I am seriously thinking of selling my house to have my ANA surgery in the States instead of risking in Mexico.

Maybe our ANA peers consider themselves a little bit more luckier that us, at least they have a medical system that somehow works.


Title: Re: mgus
Post by: ANSydney on August 28, 2018, 05:11:43 pm
Hi Lilith, so sad to hear about the dismal medical system in Mexico (unless you're a millionaire). I hope you find a good answer to your concerns.