Is this progression or regression?

[jolocny]

Hello!

My diagnosis of Symptomatic Carrier of ALD was discovered in 2005. I had a lot of the usual symptoms - falling, weakness, dropping things, headaches, etc. The one defining symptom for me was that I had NO pain. I was able to walk with the help of forearm crutches, still drove without hand-controls.

So - 4 months ago I fell 2x, wrenched forst and then broke bones in my left foot. Surgery repaired the breaks in December, I've just recently been given the OK to start walking again. I do have increased weakness in my legs after being in the chair for so long, no weight bearing for most of it.

What I've also started experiencing are leg cramping and tremors, actually feeling pain in my lower legs. This just hadn't been a problem before now. Doctors told me for years that the nerves were basically destroyed, I wouldn't have the pain & symptoms others had.

Has anyone else had this experience? Starting with total lack of pain & muscle involvement to having, at least, some pain and muscle cramping/tremors? It's only in my lower legs. Much more noticable tightness in the legs. It's a new ballgame for me and I'm not sure where to go with it. Wait it out for a while? I just saw my neuro in February but I should contact him, just to update status if nothing else.

I'd appreciate any & all thoughts you may have!

[jdw_law]

Sorry to say but that is exactly how it progressed for me. Now I am in pain all the time. The last thing that went for me was my balance. The floor and I have a close relationship.

[jolocny Volunteer]

Thanks for your response! I 'd only heard that it was immediate pain and no balance. It was at Johns-Hopkins that I was told that I was "beyond" this point. Yes, I have the same relationship with my floor!

[mariagno]

I am sorry you are experiencing pain. I too was having balance issues, falling, and having increased spasticity at about 9 years after being diagnosed. I have broken both ankles, a vertebrae and a femur. My leg breaks were fixed surgically in all cases Hopefully, you will experience what i did post healing. I had a lot of pain and high amount of sensitivity in my legs after surgery. Some of it was due to the fracture, the cutting, and installation of screws and plates. That is a lot of trauma for you body. As you heal there will be scar tissue that develops and is very sensitive. As you get mobile again, that trauma will heal. For me , it took. 6 months to a year. Remember a non ALD person will suffer pain after surgical repair of a fracture for months, too. Since we have decreased nerve functionality, only the big pain gets through and seems to hurt a lot.

What has worked for me is Gabapentin and Baclofen, stretching, keeping the weight down, and generally trying to stay active.

Be sure to watch out for things that inactivity can create. I have developed a blood clot in my leg because i have problems walking enough to pump the fluid back up my leg. This can cause sudden onset pain. Being inactive and overweight can bring on diabetes which can create additional peripheral neuropathy. The potential for Osteoporosis needs to be watched, too. This is due to reduced weight bearing activity on the legs.

None of these should be a major concern but should be discussed with your doctor especially if your activity has decreased while your weigh has increased.

Chris gave me his wisdom back in 1995. Stay active.

[joyepperhart in reply to mariagno]

What is the falling from? I trip over my feet all the time.

[Shelcee in reply to joyepperhart]

I trip over a lot joyepperhart as I can't lift my legs properly, even the slightest raise in the pavement can cause me to trip.

[StevenSims]

Hi,

I was diagnosed in Nov 09 aged 33, my symptoms started with leg pain in Aug 09 and I have always had it since? I suffer more in the evening, the only thing I have found to take the edge off it is Amitriptyline, I have spoken to quite a few with AMN and they have no pain at all? I've recently got a exercise bike but it is making me worse! I agree about keeping active! but it's a struggle!

Thanks

Steve

[bese53]

Good morning all! I was diagnosed in 2005 also due to tightness in my legs and peripheral pain. I try to keep active with walking and riding a stationery bike. It tends to be painful but I'm trying to keep the muscles in my legs as strong as I can. I also lose my balance easily if I turn too quickly or just walking a straight line. I take Gabapentin also and it definitely helps me though it doesn't work for my sister, who is also a symptomatic AMN carrier. Does anyone have problems with the nerves in their wrists? My wrists aren't acting like carpal tunnel but the nerves on the outside of my wrists scream in pain...regards

Diane/bese53

[gemini2305 in reply to bese53]

Hi my mum has the amn gene she suffers with wrist and hand pain she also tends to have stomach problems plus other health issues try to stay as healthy as possible most people with amn need large amounts of vitamin d has my brother does who is symtomatic with amn best wishes carl

[jolocny Volunteer]

Thank you all! I was always a proponent for keeping active, this latest bit of inactivity has thrown me for a loop! I have started with movement again, it's tough since the surgery. It does make sense that the injury to the body surrounding the surgery could be the biggest problem. I will keep a list of the meds you've all mentioned - I respond poorly to meds so I don't tend towards using them, but who knows? It's always good to have them to discuss with the doctor!

Diane - I have also had the wrist pain. I've been told it stems from using the forearm crutches. I found out, by accident, one day that a copper bracelet calms it right down! I was shocked by the body's response but still wear a bracelet when it flares up.

Again, my thanks!

JoAnn

[StevenSims]

Hi, Have you had your Vitamin D levels checked? low vitamin d can be a cause for broken bones and pain?

Best wishes

Steve

[jolocny Volunteer]

No, I haven't, Steve. I do have to go for labs soon and will have them include that one. I've read a lot about Vit. D deficiency lately.

Thank you,

JoAnn

[StevenSims in reply to jolocny]

Hi,

There are 2 types make sure you ask for the 25 Hydroxy Vitamin D blood test!, the active form: (1.25 dihyroxy vitamin D) always shows normal results.

Best wishes

Steve

[jolocny Volunteer]

Again, I thank you for your responses!

I did want to let you know that it seems most of my troubles had been caused by a cholesterol medication! Once I stopped the medication, from severe kidney/UTI problems, I found that most of the other concerns also left me. Seems almost like too quick a fix ... but I find that I'm able to be more mobile with less cramping and tremors, UTI symptoms (with antibiotics) have gone, and I have increased response in my legs. Enough to feel better walking, anyway. I am still recovering from the surgery and all that comes with that - the doctor is being quite cautious with me.

I hadn't assumed it was the cholesterol medication because symptoms hadn't started until 4 months after I started it - another lesson learned!

My thanks and continued prayers for all,

JoAnn