What type of AMN symptoms do you have? ("Normal... - AMN EASIER
What type of AMN symptoms do you have? ("Normal symptoms" means impairment of walking ability, loss of balance, slight/occasional bladder/bowel issues.)
matt74 VotersPlease select one:
I was diagnosed last year with AMN, it certainly answers a lot of questions regarding my health in later years prior to diagnosis. My question is it me or do we all suffer from extreme fatigue, why and how do others deal with this. Is there something I should know to help me with this please?
Hi Sylvia
Thanks for doing the Big Question so speedily! Re your question about fatigue, I know some people suffer from fatigue but I think it is mainly men with the adrenal insufficiency version of AMN. But I may be wrong. Can I ask you to post a question on the Helpvine and I will see who can answer it. Also, I will see about creating another Big Question dealing with fatigue.
If you can, can you also complete the "About Me" profile so people know a bit about you and where you live.
All the best
Chris
I also suffer from fatigue
I am a 34 year old female carrier. I've known about it since I was 14 when my dad was diagnosed with and subsequently died of adult onset ALD. Up until this year I have been asymptomatic, however in the last 8 or 9 months I have started to be more aware of pain and discomfort in my legs and tripping when I'm walking, along with one or two other things. I've seen the specialist who has confirmed what I suppose I already knew. It has made me very determined though, and now I am more active than I was before!
I am 65 year old male and was diagnosed with AMN about 15 years ago. I have walking and balance problems which are slowly getting worse. I do get tired, but not excessively and I worked almost full time until retirement last year.
I am female 62 yrs old and was diagnosed 21 yrs ago.
I have always had fatigue,walking and bladder problems. I try not to get too tired if I do then I am at the toilet half hourly. In a few week will have a botox injection in my bladder. Will let you all know how it goes.
Hi Daphne, I am so glad that you have signed up to HU. I hope you continue to use the site and thanks also for completing the Big Picture. You and I have been in touch for - what - over 15 years I would guess. So it's nice we have moved up to modern technology!
Could I ask you to complete your "About Me" profile and perhaps put a picture on your profile (I can help you do that!)
We will all be interested to hear about the botox.
Don't forget, if you want to have "private" conversations with other ladies you can do this through the "Conversations" feature.
All the best, Chris
I have AMN and have three children, my two daughters have both been also diagnosed with AMN which means for them when they decide children they can have very early tests to ensure they will not pass it on to thier children. Although this will be quite harrowing at least then they will have a choice. Myself there was no choice as I dont think my father ever wondered why his walking was very unbalanced and slow. I dont think it would be wrong to know if other family members might be carriers.
Thanks to all who have completed this so far. Please tell other people with AMN who you know about this Big Question. Please ask them to sign up to AMN EASIER!
I was diagnosed with AMN when I was 27. Was at first clinically diagnosed with MS.
I am now 39, and have spasticity in legs, circulation issues, and bladder issues. Unable to walk unassisted, walker, wheelchair, and scooter is what I use.
Hi, For the past 2 days I have been having very bad pain in my lower legs and feet, today I am struggling to walk. I saw my GP and he has given me Gabapentin, it's not working yet as I'm in agony, does anyone experience this pain and what pain relief do you use? I look forward to hearing from you.
Best wishes
Steve
Does anyone suffer from lightheadedness?
I sometimes get slightly painful, definitely uncomfortable legs at night. My doctor prescribed Baclofen but I did not see much benefit. I find that a Cuprofen maximum strength 400 mg helps me, but others may be different. My Doctor is happy I take Cuprofen if necessary, and its available over the counter.
Geoff
Hi Chris.
I think it most be at least 15 years we have known about eachother. I thought I still had your first news letter, will look again.
Have urodynamic test on Monday and date for botox jab.
daphne
<b>Updated on Sep 25 2010 3:29PM:</b> sorry was called away, then lunch etc.
Jims bad back in May turned out to be collapsed disk. He's is better with no pain now. Has started to do less now only light work on the allotment, our sons will have to do the digging.
I am glad to hear you only have problem walking, and that you can still have the opportunity to work which is a good thing.
daphne
Just to let you know my gp told to increase the Gabapentin and I now take 2 x 300mg 3 times a day and I have increased the baclofen to 2 x 10mg 3 times a day and the pain and stiffness has eased slightly thank god,
All the best
Steve
I find that Tizanedine is helpful, Baclofen was my starter but it left me feeling miserable. I don't feel pain but this is not surprising since my legs are practicaly paralised, more like tentacles! Fatigue and mood swings are very regular, any suggestions would be welcome.
Good wishes........P
Hi Chris,
Great idea, thank you so much for setting up this. I was wondering: would it be useful to have 2 wheels rather than one? (one each for female and male)
The adrenal insufficiency it's such a murky issue for the female carrier scenario (at the last AMN/ALD weekend the docs sounded very uncertain when I asked...) that I think it could be interesting to see if something turns up. Talking with other ALD carriers we felt some of our symptoms could indeed be related to some kind of adrenal insufficiency even if not directly leading to Addison disease.
Thank you!
Mon
Hello! I am SO glad to have found you all! I belong to other sites but they become inundated with troubles that kids have ... which I don't discount at all ... just like to talk with others going thru the challenges adults have daily.
I was diagnosed in 2005 with AMN. I have a son (31) who's not been tested, a daughter (27) who tested negative for the gene. I have been treated for bladder incontinence for 12 years - now we know the real reason why! I take baclofen (5mg 3-4 times daily ~ any more and I can't function). I will look into the other meds suggested here. I started taking amantadine (100mgs once daily ~ find the any more than that causes me to stop urinating) for fatigue in July and that's been supportive but not the absolute answer. I've also had to confer with my Urologist often to regulate the incontinence meds on the one amantadine.
My symptoms have all worsened over the last six months. No pain, thank God. The most bothersome for me ( and my hubby) have been "losing words/train of thought". I also find that I must turn very carefully or I lose balance more often. Still use the forearm crutches to walk ... am beginning to wonder for how much longer as my feet seem to want to turn inwards occasionally. Anyone else having these concerns?
Thank you for all the responses I've read here! I want to involve my husband so he can find some relevance in where we are!
JoAnn
12 November - well, as of this date, we've had 27 votes on this, the first Big Question about AMN. Of course, 27 people isn't a huge survey, but it's significant nevertheless. It shows that men and women with some symptoms make up about 80% of the total, with just less than 20% reporting no symptoms at all. And, men and women are so far identical in the balance between those reporting "normal symptoms" (19%) and those reporting some kind of "other symptoms" (22%).
There's been a suggestion that we should repeat this survey with two separate pie-charts, one for men, one for women. What do all of you think?
Don't forget - women, please respond to the second Big Question about age at which you first noticed symptoms.
Once again, many thanks for taking the time to respond.
Chris
Moderation team