Bilateral foot drop

[gregdickerson]

Hi everyone,

I am new to the site and I am in the process of diagnosis. I have bilateral foot drop as well as other symptoms that started about 18 months ago. My question is have any of you with foot drop had any improvent in range of motion but still have progression of ALS or diagnosis later? Do symptoms come and go, better some days worse others? I was told by a Neuro that if you have any improvent at all that it is not ALS. He siad that with ALS you only continue to get worse and never have any recovery even if temporary. Is this true?

Thanks for your time.

 

[Al]

Unfortunately I'd have to agree with the Neuro. Sounds like yours gets better so you may have nothing major to worry about.

AL.

 

[GlenBrittle]

Hi Greg,

Welcome to the site.

I started with foot drop , which is turning into ass-drop.
Yep , at any time , my ass will drop to the ground.

There is no improvement with ALS. The most to hope for is a very slow progression.

If you are seeing improvement , congrats for that. I do not think you have ALS.

Only your neuro's can say for sure. Make sure you get a neuro that specializes in MND/ALS

Glen

 

[gregdickerson]

Foot drop

Thanks for the response guys.
I really appreciate your help. Just so you have a little reference I just turned 42 wife and 3 girls from 6 to 16. I am 6 foot 170 pounds and was very active. I am a surfer, I ski, work out every day. 7 months ago I was running sprints on our football field. Needles to say I was in peak condition. I am the type of guy that never goes to the doctor for anything. Even when the foot drop showed up my wife and friends where all telling me to go see the doc but I just figured it was an injury and blew it off. I did not go until my left foot went out.

It all started with very suttle foot drop in the right leg over a year ago. Slight weakness and stiffness in the leg, lots of craming then the foot went out completely this april. Then 6 weeks later the left foot went out. I could still walk but not smooth or easy. I went to the neuro surgeon because my GP thought it was a back issue. The neuro surgeon told me it was not my back and suspected MS or Neuromuscular disease. We ran every test you can run and all clean. My first visit with neuro was in June. EMG showed denervation and fibs in the muscles next to my shins and NCS showed nerve block from peroneal nerve at the tibilia head. My neuro said I have neuropothy which makes sense only he can't tell me what type or why. All we can do is now is wait.

Since my last appiontment the fasics have moved to the upper legs, butt, arms, hands and torso. I have them 24-7 but they are not super active all the time. During the day they are more calm and at night somtimes they go off. They are not going off every second. Just a thump here and a thump there. Sometimes the same spot will twitch few times in a row but the big muscles thump pretty good somtimes. Almost to the piont of feeling like its going to cramp. The lower legs are more subtle feeling. I have a follow up in a month. Are your fasics similar? More active all the time?

I am going to a neuro that specializes in ALS, MND, Neuropothy and MS for my next follow up and hopefully we can pinpiont this thing.

Thank you for your insite.

 

[GlenBrittle]

Hey Greg ,

This damn disease doesnt seem to care how old you are. I was 48 when them symptoms started - left foot weekness, 49 when diagnosed , and now 50 and still kickin butt.

Dont read a lot into the fasics.

The reason I say that is that if strain a muscle , not hurt it , but really work it, those fasics come out to play.
Stress and anxiety will make them show up also.

Its is good that you are going to see the proper neuro.

Until then , its all about a positive attitude and keeping the energy levels up.

Glen

 

[gregdickerson]

Thanks Glenn. Keep kickin that butt!

 

[Big Mike]

Hi everyone,

I am new to the site and I am in the process of diagnosis. I have bilateral foot drop as well as other symptoms that started about 18 months ago. My question is have any of you with foot drop had any improvent in range of motion but still have progression of ALS or diagnosis later? Do symptoms come and go, better some days worse others? I was told by a Neuro that if you have any improvent at all that it is not ALS. He siad that with ALS you only continue to get worse and never have any recovery even if temporary. Is this true?

Thanks for your time.

I guess it all depends on what you mean by symptoms coming and going. If you mean the foot drop goes away on certain days, no, it couldn't be als. If you mean it slightly improves over short intervals of time but the overall progression continues to get worse, then it's hard to say.

I've had foot drop for over 15 months and now, and can still walk on my left foot, but it is getting pretty bad now. No improving, just short intervals when I can walk slightly better on it due to reinnervation.

 

[crystalkk]

Greg

Sorry that you have to be here......Did the nuero tell you how your reflexes are?

 

[gregdickerson]

Big Mike,

Yes thats exactly what I meant. My walking ability has improved some the past couple of weeks but I still have weaknes and foot drop in both legs. I still cannot get on my heels or lift my feet off the floor when standing up straight. My symptoms have never gone away completely just better some days due to reinervation I guess as you stated.

crystalkk,

He said they were normal so far. He is calling this a neuropathy at this piont.

 

[laurel]

Hi Greg,
I'm surprised that your neurologist has not started/attempted some treatment since he is calling it neuropathy. My husband has CIDP which is neuropathy and he is treated monthly with IVIG. Hubby had some foot drop symptoms when he was diagnosed in 2007. He had pronounced "plopping" of the right foot and atrophy/weakness of the right arm. The foot drop symptoms improved somewhat, but he has a very noticeable gait irregularity even post treatment i.e. permanent damage. And his right arm and hand is wasted in appearance, but he regained some strength and use of the right hand post treatment. He was misdiagnosed by a neuro. with carpal tunnel, had surgery, and in that two year aftermath he had lots of nerve damage occur. Had he received prompt and correct diagnosis he would not have all this residual damage that he now has. I would recommend getting a prompt second opinion.
Laurel

 

[wright]

Hey Greg

What stands out to me is the conduction block that was seen in your NCS. That is a classic sign of multi-focal motor neuropathy (MMN). CIDP is another possiblity. Both are autoimmune in nature and both are treatable but you should get prompt attention (as Laurel said). Neuropathies can be caused by hundreds of other things as well, but it makes no sense to just sit and wait. Go get another opinion (or at least press your current neuro to explore a bit further) and see where that takes you. Take care.

 

[gregdickerson]

Laurel and Wright,

Thanks for the input. I have pressed my neuro but he says he does not want to treat until he determines a cause. I have tested negative for everything so far that would be a common cause so he said the only way to pinpiont is to wait and see if any other symptoms / progression develope or recovery. I had my nuero refer me to Johns Hopkins in August as I have heard they are the best when it comes to Neuropathy and Neuromuscular disease. My current Nuero is in Norfolk and they are not specialists in these areas. Just general Neurology from what I have gathered as they never seem to be able to give me any answers or even the desire to answer my questions. They just hurry you in and out.

 

[crystalkk]

Greg,

Your doing the right thing by going to Hopkins.....
Who is your appointment with at Hopkins?

 

[awieleba]

Greg,

Wright~ I thought MMN as well after reading his results but did not feel qualified to make a post as to such. I was thinking that most of us on here would love to have a conduction block!

Greg,

good luck and pursue treatment.

april

 

[laurel]

Greg,
Hubby had one of those neurologists i.e. wait and see, come back in 6 months. Big mistake in trusting him and not being more pro-active. If we could go back in time, we would have moved on to a second opinion right away. We waited until permanent damage was done and then got the second and third opinions. Unfortunately some neurologists seem to have a very cavalier attitude--although they probably wouldn't if it was them in the same situation. Your appt. at Johns Hopkins is August so that isn't so bad. Let us know how it goes and best of luck. My fingers are crossed for something autoimmune.
Laurel