I apologize in advance for my post as I am all but certain that my issues are unrelated to AMN. However, for two years or more I have had issues that have included excess phlegm/mucus in my mouth, dry mouth, bad taste in mouth, inability to breath through nose, and shortness of breath. These combined issues make it difficult for me to speak with the speed and enunciation that I would like. This is troubling because I am an attorney. I am not overweight, do not smoke or drink, and (but for AMN) would appear to be in good health. I started consulting with an ENT in December of 2015 who thought that my problems might be caused by acid reflux. I have taken omeprazole off and on without consistent relief. I then saw a second ENT who suggested that I have a septoplasty to correct a deviated septum so that I could breath better. This seemed like the logical solution to my problem. Since the surgery I have had times when my breathing/talking has been amazing. However, the majority of the time everything has been as bad as before. I just saw the ENT, and he says that I am completely healed from the surgery and cannot explain my continued issues. The only thing that he can offer is that it might be related to AMN. Of course, he knows nothing about AMN. Therefore, my ridiculous question to everyone is: Have you heard about AMN sufferers who have encountered similar problems? Any thoughts are appreciated.
Thanks.
Chris Phillips
Written by
cdp71
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Are you on any medications or have you changed doses? These can be side effects from several medication families that AMNers might be on (tcas, anticholinergics, sris /SNRIs, even allergy meds, etc.) even a small dose or dose change can sometime trigger this. Maybe try a combination of mucinex (guaifenesin) with a good amount of water to thin the mucus and keep any and products like Biotene to help with dry mouth and nose when needed?
I see from your profile that (and this answers tieaknot's question) that you take no drugs or medication of any kind. So this scotches any idea that the symptoms you are experiencing are side-effects from a drug. That would have been my thought.
On your basic question, I have never come across the symptoms you are experiencing as being due to AMN.
I can understand how troubling this must be, especially given your profession as an attorney. I can't unfortunately offer any more at this point.
I have AMN and am experiencing issues with speech. My MRI was clear but I suffer from mild slurring and difficulty getting words out sometimes. I also have mild problems swallowing. I too take omaprasole but this is a common complaint from non AMN people so not sure it is linked as I had problems with this for some time. Finally I met another AMN guy too suffering the exact same problems as me and know of one other that has mild speech problems. Hope this helps. Mark
You can see Speech Difficulties is listed as one of the signs of AMN.
My brother has problems with enunciation and he has had it for quite some time. I'm beginning to notice it in myself. I recall when completing medical forms there were check boxes for difficulties in swallowing and in speech. I intend to raise this at my next medical visit in August.
Thanks for asking! I'd assumed that my dry mouth and use of reflux meds were totally unrelated to ALD/AMN - I never seem to attach a symptom to the disease right off.
I have noticed on everything I take medicinally have side-effects the include dry mouth, but don't go into depth and attend to the bad taste I have occasionally. I have experienced SUCH a dry mouth that it was hard to breath, talk and swallow (NOT good for any social endeavors). After reading about dry mouth, and through my dentist, each symptom builds on the next. I understand that the dryness leads to bad taste and I try to be well hydrated to overcome the two symptoms. I also started to carry hard candy to alleviate some the dryness as it happens, perhaps not the best but it works. Having had bad sinus troubles for years, miraculously, they've gone away!
I just read the post that Julie suggested and that brought up a few symptoms that I hadn't attributed to the AMN (thanks, Julie!). Sometimes, it feels like I'm keeping my head in the sand with some of this!
I hope you're able to find some relief, Chris, and find some answers here.
Thanks for everybody's reply. I am aware of AMN speech issues and at first worried that that was what was happening to me. However, I can enunciate beautifully for a couple of words. After that there is some crap that accumulates in my mouth/throat that makes everything much more difficult. Also, my throat often feels very raw and seems to get irritated when I talk. Right now, I am thinking that it is acid reflux that is causing the problem, and I will again see a doctor about that. I probably need to have an endoscopy to see if there is any damage. Mokeybus' comments seem the most similar to my situation. Have you ever considered acid reflux as the source of your problems? Hopefully, I can get a resolution soon because until I do, my life is on hold.
Chris, as I mentioned, my brother also has enunciation problems - and thinking about this more - he also has acid reflux. One more thing to bring up at my next doctor visit. I hope you find the answers. Please share!
Hi cdp71 . Yes I too have a deviated septum. Severe Nasal mucus which is always water coloured (clear) and can be very thick. To choking point. Especially when I cry. Ive been complaining about excess thirst and dry mouth.. No doctor could explain why I had this but was referred of to school of dentistry who are trying to work out the reason too. I was sent to ent who offered me the same operation to correct my deviated septum but I declined as I felt this was not causing me the excess mucus but was a condition of a bigger picture. I have a family history of CMT but as yet I have not had AMN diagonised but am in the proccess) as it looks like im one the the few that has developed Addisons with it. Being female its meant to be quite rare for a girl to develop Addisons. Anyway I just want to let you know that excess mucus is a sign of addisons. Have you had any blood tests for Addisons diesease. In AMN men addisons is high risk. Do you have severe bouts of diarrhoea? Do you have any areas of your skin that are hyperpigmentated. Ie. my right arm has what I describe as a large tea stain on it. Another classic sign. Sorry for waffling on a bit. But theres loads more if your interested.
Thanks for your message. I have ruled out dental issues as the root of my nose problems. However, I seem to keep getting worse. I do not sleep (i.e. I wake up at 3-4 every morning), which results in my feeling like crap all day. In addition to not being able to breath through my nose, my face/eye sockets are throbbing, which could be the result of lack of sleep. I should mention that I am under a lot of stress now as I have an unstable job and marriage. I have searched the web, but do not see mucus as a symptom of Addison's. When something comes up, I always think that I have Addison's, but it has been years since I have had a test. Given my numerous, inexplicable issues now, I might finally have one done. It would explain a lot, but I am by no means confident that I have the disease.
I visited another ENT who does not think that my problems are related to acid reflux. She said that I have excess saliva, but could not explain why I cannot breath through my nose and feel short of breath. She advised that I see a neurologist. Obviously, this is not good news. I guess that Addison's is another possibility, and I probably need to get tested for that. After that is the dreaded/scarry MRI. All in all, I feel like crap 24/7 and have a hard time making it through the day. Sorry for the depressing post.
Sorry that you have not yet uncovered the cause of your symptoms. I do want to mention that my brother does have Addison's, but I don't know if his breathing difficulties are related to it. Also, I have had 3 MRIs in my life, none related to AMN. It's another test. I hope you find some help.
Hi. I am also having these issues and have done for nearly 3 years. I saw ENT and he told me the same as you and gave me medication. I have been referred back to ENT as I still have the problem. He also told me I had chronic cough and that my voice box had shunted upwards causing me to feel like I am being strangled. I was sent to a speech and language therapist to learn how to talk again. It is becoming too much now. When I cough I can feel my voice box moving and it is making me feel sick....my eyes water and nose fills up with mucus. It feels like something is crawling in my neck and is affecting my ears nose and throat as well as eyes. I will let you know how it goes tomorrow and can now also show him info on AMN as I am looked at strangely when I say I have several symptoms. Hope this helps. I don't feel so alone with this anymore.
Thanks for message Debi. Your symptoms sound fairly similar to mine, other than the eye watering and cough. In addition to the dry mouth, I have also have very dry eyes. Also, coughing has never been a problem for me.
Did your doctor suggest a reason for your voice box "shunting" upward. That seems rather strange. Like you, I continue to look for a cause to my problems, but with little success. Please let me know the results of your latest visit.
I have just got back. He has said I have silent scid reflux...tablets been doubled and I have to take gabion. ..the really thick one. He has agreed to see me in 2 months for MRI and x rays if no different. I showed him your message and he said he isn't interested in what I got off the net. I explained it's an illness in my family and he shrugged it off. Story of my life.
I took the acid reflux medicines off and on for six months, but did not see any real relief. However, your situation could obviously be different. I agree that doctors can be frustrating. Good luck with everything and let me know how things progress.
Hi. Apparently I have very mild or next to nothing of AMN or ALD. Yet I have been diagnosed with Fibromalga but hey ho.So. I have been suffering with breathing issues for years. Went through all that your specialists have said about you. Had 2 surgeries on my nose and other areas to remove polyps.
I changed hospitals due to ENT saying it was Silent Reflux and stress. (Idiot)
I have a very rare chronic Asthma.
My illness is called "Samter's Triad".
I have Eosinophilic Asthma were white blood cells attack my lungs. The second part is nasal polyps which combined with the asthma, makes it very difficult to breath. The third part is Allergic to Aspirin .
I was sent to try to Desensitise but the Allergy specialist said i would have to take up to 2000mg of Aspirin daily.
She listened to my breathing and said she cant do it cause it will kill me.
I have been through hell with this.
The stuff that comes out of me is like glue. You could hang a picture on the wall with it. I have bright red cheeks from my sinuses being constantly irritated and i have to take Prednisone daily to keep my airways open.
I also get shaky eyes where i see waves and it feels like i have lines across my eyes like i have glasses on. Its horrid.
I have just been diagnosed with Degenerative Bone Disease and walk with a stick incase i fall. (Which i do regularly )
My left side is worse so have to hold the stick in my right hand. The left is bad.
Im going to stop now as this is already a long read.
Im on huge amounts of medication daily.
I hope this helps you and maybe find some answers.
It took 15 years to diagnose Samter's Triad and i have often wondered if anyone else with AMN/ALD has the same.
I have have a huge beef with doctors and you have to be willing to push back hard.
Every illness I have ever had according to multiple doctors in multiple specialties is always AMN related.
This is absolutely false and can be very dangerous.
In 2012, I was experiencing mild shortness of breath, worse when in bed. My neurologist said he saw this in his MS patients and recommend putting my head up more while in bed.
After a few months I saw my GP. She listened to my heart and sent me to the emergency center at a heart hospital. I had 2 liters of fluid in my chest. It was effecting my breathing and having enough air to finish sentences while breathing.
The diagnosis was a mitral valve in my heart that needed repairing. 11 years later, all is great.
In 2022, I got wounds on my toes that would not heal and got infected. They were slow to heal but again I was told it was something people in wheelchairs deal with. Finally, a pediatrist said I must have diabetes. I had flirted with being pre diabetic for years. Dealing with the diabetes has my toes healed.
I have trouble with my urologist to examine past my AMN for sexual issues. I am 60 years old and plenty of 60 year old men have ED and anorgasmia without having AMN. I have venous issues unrelated to AMN. He will not do any Doppler testing of the blood supply in that area. I am looking for a new neurologist
I can accept that AMN causes non-repairable things but it is not responsible for every ailment. I just expect an open mind when I come in for treatment.
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