Woman with Amn

[Teeka_97]

I am 58 years old and have been diagnosed with AMN

[KazzyALD]

Hi Teeka, sorry to hear of your diagnosis. I’m 50, and have had symptoms for about 10 years.

[Teeka_97 in reply to KazzyALD]

Do you have a lot of pain? If so what do you take?

[KazzyALD in reply to Teeka_97]

Yes, I have a lot of pain, but I also have Fibromyalgia m, and Rheumatoid Arthritis, so it’s coming from all sides 🤣 I take Amytriptaline at night, that helps with pain, the neuropathy in my legs, (stops my legs from kicking), and it also helps me sleep. I also take co-codemal. There’s a lot of pain meds that don’t agree with me, I tried a few over the years 🤣 I try to move around as much as I can. I’m not as mobile as I used to be, but moving around will help.

[Teeka_97 in reply to KazzyALD]

I'm so sorry to hear about all of that. I just thought Carriers didn't get anything. My son has it and he is 43. He doesn't have any pain. His knees give out on him.

[KazzyALD in reply to Teeka_97]

Sorry for the late reply, but it was almost 2am & I couldn’t stay awake any longer 😂 Although many doctors will still call you just a carrier, it’s been proven that would can show symptoms. I have nerve damage in my legs. I go off balance, my knees, ankles & hips have given way, & made me fall, but like I said, I also have Rheumatoid Arthritis, so at times, it could be down to that. Hopefully, other women on here will see this post, & they’ll share their symptoms. Thankfully, my son is 32 & still free of symptoms. He does have Addison’s Disease though.

[Teeka_97 in reply to KazzyALD]

I have extreme pain that goes down both my legs at the same time. From my thighs to my knees sometimes my legs give out and I just fall. It came out of nowhere so I had to stop working. I'm also going to see a rheumatologist next week. I've seen so many Drs. With no answers. Very frustrating. You have a lot to deal with. I will keep you in my prayers. My father and his 2 brothers had this. There is one more brother but he is fine.

[KazzyALD in reply to Teeka_97]

It is so frustrating within the medical world, because so many doctors think we’re still just carriers. I’m having problems with my GP at the moment. Sorry to hear you’ve lost family members to this disease. It’s a cruel disease. I’ve lost a cousin, and a nephew. Another nephew had a BMT, which thankfully was a success. I hope all your tests come back negative at Rheumatology. ALD is definitely enough for anyone to deal with.

[Leonie in reply to Teeka_97]

Hi Teeka. I'm 53 this year and my symptoms started at 42 and I live in NSW Australia.

Just like you described your pain I have the same, in my hips legs and feet and all my joints.

Over the last 10 years my doctor's have trialled me on several different meds but for the last 3 years or so I have been on Cymbalta 2x60mg tabs and Lyrica 1x150mg both at night.

Ive been able to work through the day without much pain at all now. I know it doesn't work for everyone but it has been a blessing for me.

I still get tired, weak and have numb, hots areas in my legs but the pain is 80% better. My stress levels are better also. I find doing small spurts of movement helps a lot. Just not too much of anything at one time. If I do too much on one day I collapse with fatigue the next day.

Hope you can get some kind of pain management that works for you.

Blessings

Leonie 💟

[Teeka_97 in reply to Leonie]

Thank you so much. I am on Cybalta now 60 mg o ce a day. I will ask about lyrica and see if that's an option for me. I would like the pain to stop and be able to walk normal.

[Leonie in reply to Teeka_97]

I tried both on their own and neither worked for me but together made all the difference. Good luck.

[Shelcee in reply to Leonie]

Hi Leonie

I live in Sydney and am a 46yo carrier.

I lost my brother to ALD when he was 34 and saw my aunt struggle with AMN symptoms until she passed away.

Like you I’ve had symptoms, hips, legs, joints, incontinence issues etc since I was 42. I find myself tripping over my feet a lot.

I was wondering if you wouldn’t mind sharing details of any doctors or neurologists you’ve come across in our area who have good knowledge of what we are up against.

I need to see someone as my symptoms are definitely progressing.

Thanks

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Teeka, welcome to our site.

As Kazzy says, you will get lots of support from this site as there are many women from around the world who deal with real effects of AMN. You're right that it used to be thought that women were just carriers, but we now know differently. In some ways, women's symptoms can be worse, for example, things like bladder and bowels.

We are all used to speaking openly about our symptoms. It helps to find others who can speak about the same kinds of problems.

You don't say where you are located. Our members come from around the world, but we started in the U.K. If you can tell us the country and the nearest city or town, we may have other women nearby who you could meet.

All the best,

Chris

[Teeka_97 in reply to COwithAMN]

I'm in the USA in Pennsylvania. Most Drs. around here never heard of ALD. Its frustrating. There's a Dr. In Baltimore, MD. Who doesn't accept my insurance plus its 3 hours away. I cant drive that long. I just went to a pain management Dr. Who thinks I should get shots in my back. Don't know if it will help or not.

[COwithAMN Administrator AMN EASIER Volunteer in reply to Teeka_97]

Thanks for clarifying that Teeka. I can't help (I'm in the U.K.) but there are many AMN women and men in the U.S.A. here who I am sure can offer some useful suggestions.

[Teeka_97 in reply to COwithAMN]

I'm in the USA in Pennsylvania. There's no one here who knows about this. Our health care system stinks

[jolocny Volunteer]

As so many here replied, AMN can definitely be symptomatic in women. I’m 61 (when did THAT happen??) and was diagnosed I my mid 40s. No family history so it hit me like a ton of bricks. My situation is very advanced and have almost no feeling in my legs. The myelin is nonexistent. That can be as bad ... I’ve no idea when I fall, I just go. Then I have to rest where I’ve fallen until I can move again.

I started using a cane, using a motor art when shopping to save my energy for better things. I went from there to forearm crutches. I took a couple falls and wrenched my left foot badly, breaking bones the second time. Now I’m in a wheelchair full time. But that’s MY path. Most carriers never get this far. Ugh.

Your journey has started and I’m so sorry it has. Try to keep as active as you can. It’ll only help. The falls are hard to take. Maybe PT could help you to understand all of this better?

I’ve been educating doctors as I go. My GP is good - he doesn’t know much about AMN but he knows that I won’t abuse his abilities. Finding a neuro that’s worth going to is hard - I went to 5 before seeing the one who finally diagnosed me at Strong Hospital in Rochester, NY. I’m in central NY. I see my doc there yearly, go to Kennedy Krieger at Johns Hopkins, too. I’m assuming that’s where you tried to connect? If it’s at JHH in Baltimore I’d think they’d take any insurance! I have their phone# if you’d like it. It’s a good 6 hours for me to get there.

It takes a while to learn to work with this damn disease. Please don’t give up! I had to leave work, too. I volunteer now and that helps to keep my spirits up. Don’t be too hard on yourself and keep going! I know ... but it only helps ...

[tieaknot]

Hi there and I’m sorry you’ve needed to join this club but welcome! You’ve found people who can really understand what you are dealing with. I will agree with a lot that’s been said. I’m a “carrier” who started having symptoms in my mid 30’s. I’m now in my mid 40’s. I have quite a bit of pain all the time and then the “pain on top of pain” from other stuff. I had a pain a management doc want to do shots in my back but I can feel the difference in my different pain (if that makes any sense) and at the time I knew there was no way I was letting anyone near my spine with a needle. (I certainly would consider it when my herniated discs act up though). Anyway...I keep tramadol on hand (I got it many years ago after a surgery) and just one pill will work well for my neuropathy all day, but I only take it on days that the pain is unbearable as no one wants to prescribe controlled meds anymore. Unfortunately I’ve had several doctors roll their eyes at me when I mention pain and other symptoms and say that “carriers don’t get symptoms”. I carry around the latest research papers and hand to them. I have a local neuro for my migraines and neuropathy but she won’t really address the ALD except to tell me to go back to KK (Kennedy Krieger) and I think she doesn’t believe me half the time anyway. It can be so frustrating. I am in MD so John’s Hopkins/KK is only an hour or so from me but I hate the drive and have only gone twice in 5 years. They were wonderful folks but at the end of the day, there’s still very little they have to offer us women. So I see a local neuro, urogyn (for bladder issues), GI at times (for gut issues), previously a useless pain management doc, and I hate PT so I go to the gym and try to do my own. Keep moving, whatever you do!!!

[Teeka_97 in reply to tieaknot]

I want to Thank all of you for giving me these tips. My son told me about this site. He act6has ALD at 43 years old. He has been to Kennedy Kreiger and continues to go once a year. They don't take my insurance which is ok because they can't do anything for me anyway. My dad and his 2 brothers had this along with my sister who died in 2018. My sister was never tested because she never had children but her brain was shrinking along with dementia. Nobody knew. We just thought we were carriers. I never thought my life would be like this. I always worked 2 jobs now I can't move so well. I just have to leave it in God's hands. My MD. Told me to take vitamin B1 & B12 so I will try that. I also go to swim aquatics because I cant do anything above ground. Too painful.

[Teeka_97 in reply to tieaknot]

My son lives in Ocean City, MD. He tells Kennedy Krieger what he learns. I've talked to people there. They are very nice but the told me I need to find a Dr. in Pennsylvania. No luck here. They don't know what to do with me. I don't want pain pills. I went off my gabapentin because it wasn't helping. So back to square 1 again. I started showing signs where I couldn't walk up steps. I had to pull myself up. Me thinking my knees were wearing out. In Dec of 2018 I just couldn't walk far. My legs gave out. It's so frustrating. My mind wants to go but my legs say NO WAY! I'm glad my son found this group for me. At least people don't think I'm crazy.

[julie_]

Sorry to hear that you found yourself here but welcome! I am 55 and was diagnosed with AMN along with my brother in 2011. I have learned so much on this site and have accepted that everyone experiences AMN differently. There is not a right path for everyone as jolocny has said. Like KazzyALD I also have other pain on top of this pain and I haven't found a solution yet.

By the way, I'm in NYC. I fall quite often but I'm still optimistic that somehow my sciatica / spinal stenosis will somehow clear up either by some sort of therapy or my own sheer will! I may have to go the surgical route - last resort.

Hang in there. This is not an easy disease to manage. We're all doing what we can! I am staying active and keep a healthy diet, both as best as I can.

[Teeka_97 in reply to julie_]

Thank you so much. I love this group. My son found it for me and he thought it would help

He was right. Everyone has been extremely nice and helpful. I will get through this somehow someway. I got through cancer and I will get through this.

[monkeybus]

All these women here claiming they have symptoms (including my Mother).

Yet the medical establishment is clear on this one. Women are not affected by AMN. Case closed.

Even my neurologist says so. Funnily enough, he is a man.

Women have always had a raw deal when it comes to medical research. I am reminded of this article:

theguardian.com/lifeandstyl...

Here are the first couple of paragraphs -

"According to the Institute of Medicine, every cell in our bodies has a sex, which means men and women are different at a cellular level. That also means that diseases, treatments, and chemicals might affect the sexes differently. And yet there’s a long and storied tradition of ignoring gender when it comes to health research.

For several reasons, female subjects have historically been excluded from toxicology or biomedical research, says Tamarra James-Todd, an epidemiologist at Harvard Medical School. While progress has been made since 1993, when the National Institutes of Health mandated that women and minorities be included in any government-funded health research, there’s still a long way to go."

It is bad enough for us mere men to get decent treatment for this disease. But women are being ignored. This will not do.

[Teeka_97 in reply to monkeybus]

This is so wrong. Do they think we actually want any of this? The whole health care system sucks now. Nobody cares. Its sad. I never thought it would end up this way. So we all just have to learn how to deal with this on our own. Wow! At least we have this group so we can at least talk to each other.

[tieaknot in reply to Teeka_97]

There are many that do care out there but they are often overworked, buried in paperwork and burnt out...and have been taught in big prestigious medical schools that women aren’t affected (if they were taught at all about ALD let alone females! I attended classes with the med students in my program and do not recall a single mention of ALD except a passing reference to the movie “Lorenzos Oil” and a quick list on an overhead slide of “rare leukodystrophies”.)

It’s like going through life being taught that the world is flat...most people never venture to find out that it’s not flat, so they believe what they’ve been told. Same with the docs...most of them would never have a patient with ALD let alone a symptomatic woman (though that may changing now with the newborn screenings) and so they don’t give it much thought and accept it as fact that X linked genetic conditions = female carriers and nothing more.

I’ve often told doctors and even friends “think of me as having progressive MS...(because the underlying cause is different but many symptoms and signs are the same), and other than the disease modifying drugs for MS, what would you say or do for me? (The disease modifying drugs won’t help us and can have terrible side effects but the symptom and function treatments might be helpful!)

MS is something they have heard of and know...and seems to make them more

comfortable addressing.

[tieaknot in reply to monkeybus]

Luckily (seems like the wrong word here?), the tide is shifting even in the medical and research community since I was diagnosed 6 years ago...when women were “just carriers” or at the very most were said to possibly have “milder symptoms” (like I’ve said before, “milder” than completely devastating or death can still be pretty rotten!) Many of us were first mis-diagnosed with one or more pretty significant diseases (in my case, we went through the following mis-diagnoses- progressive MS, CIDP, transverse myelitis, possible neoplastic syndrome neuropathy, etc. and of course the ever-popular “hypochondriac” (aka. Go see a psych, it’s all in your head, nothing is wrong with you) diagnosis...UG!

Problem is, the info isn’t reaching the “boots on the ground” aka. the doctors anywhere other than ALD speciality places for the most part. WE are the educators now...we have to share the newer research that actually states that women are no longer “just carriers” but that most do end up with a diagnosis of AMN of a female phenotype along a spectrum of symptoms. Very rarely do they acknowledge pain though. It seems women often end up with more chronic and severe pain involvement. Maybe because the axons smolder and die more slowly in women as our good X gene tries to keep up the work? I don’t know, just a guess?

Anyway, I believe in the next generation or 2 we will see more women issues mentioned (it appears there are several other X linked conditions for which they are now recognizing that women may be much more symptomatic than previously thought).

So keep up the good work and share the info with your doctors. Try to ignore the eye rolls and be prepared with the facts and statistics in the reports to gently correct them when we are deemed “just carriers” yet again...

Because my legs and back and hips and knees and feet and bladder and gut and the list goes on, did NOT get the memo that they “shouldn’t” be affected!