Information Appreciated

[asmileaday]

Hi All, I am new to the board but have been reading a lot. My husband is 44 and in November while out running his leg just quit working. He literally had to drag his leg to get home.
Since that time he has had what is called drop foot. He has been going to the doctors for months and has had 2 MRIs, bone scans, blood tests, nerve conduction studies, and a ton of other things I can't remember right now.

Basically, the tests have not shown anything other than the nerve condution showed problems and the problems are symetrical. I am sure I am leaving lots of stuff out.

His symptoms now include
1)drop foot
2) muscle twitching - started I think in his leg but are now all over his body although they are not constant
3) muscle weakness - he says his feet feel like "jello" - both feet and has moved up to his legs just below the knees in the last month
4) sometimes he has the "jello" feeling in his hands
5) extreme fatigue - he has an office job and comes home and is totally exhausted taking a several hour nap
6) his balance is getting worse - can barely stand for any length of time without having to hold onto something
7) Last night he started talking to me and his words were so slurred I couldn't even understand - that was the first time that had happened

So his neurologist has basically said there is a nerve problem and come back in 3 months so we can see how you are doing. He gave his some vitamins that are used for Peripheral neuropathy but they haven't helped at all. I can see him getting worse although he says he doesn't see any change. He may just be saying that to make me feel better.

When my husband questioned the doctor about ALS he pretty much laughed at him and told him that he could send him to Atlanta but they would basically say he didn't belong there.

For those with ALS or who have knowledge of this disease do these symptoms sound anything like ALS? Everything I look up seems to point toward this.

Thanks in advance. I am so afraid right now.

 

[liz]

asmileaday -

Welcome to the forum. I don't mean to sound alarming, but it does sound like your husband should get to an ALS Center for thorough workup. It very well could be something else, but you've got enough reason to seek out an MND specialist now.

Good luck,

Liz

 

[asmileaday]

Thanks Liz. I am going to talk to him tonight. We don't talk much about all of this. I think we are both hoping he will just wake up one day and be fixed.

 

[liz]

asmileaday -

I understand this is a very difficult issue for spouses to approach with each other. I was diagnosed over six months ago, my husband and I still have a hard time talking about it. Do you guys have kids?

Liz

 

[Carol Deboer]

Hi asmileaday,

Welcome to the forum. I agree with Liz. See another specialist now! All of these symptoms can be indicative of als, however, since there are no tests for als, ruling everything else out comes first. You have to wonder about a doctor who is not willing to take you seriously. Keep going to doctors until you get answers. It is crucial that you find out what you a dealing with. And as far as talking about what is going on, go with your heart. You both know each other and what is best, for now. Get your diagnosed, there will be time to sort things out. Best of luck.

Carol D.

stay strong....

 

[asmileaday]

Yes Liz. We have two boys both teenagers. One of the hardest things has been that my husband can't go hiking and running with the boys. My older son runs for his cross country team and the younger one is very into hiking and mountain biking.

Somedays, I think if we just had an answer it would make things easier but then after reading where some people wait years for diagnosed I don't know if I could handle that.

 

[grant]

asmileaday:

I would encourage you to get to an ALS specialist asap. There are several other (and treatable) conditions that mimic ALS and cause the symptoms you describe.

I was first diagnosed with lower motor neuron disease in Oct. 2004, but my doctors (including an ALS specialist) still have not ruled out an autoimmune cause and I have not yet been given an official ALS diagnosis. The autoimmune conditions (such as CIDP, MMN and others) are rarer than ALS and only a specialist can make the distinction and determine whether treatment directed at the immune system is warranted.

I have learned that you must be very assertive with your medical consultations, learn as much as you can, and do not accept an ALS diagnosis until all other possibilities have been exhausted.

Grant

 

[brooksea]

asmileaday_

If you live near Atlanta I would encourage you to speak with your husband about going to Emory Clinic. All of the various specialists are at one location and will come to you while you wait in the exam room. If your insurance doesn't require a referral I would say this is a no brainer - get to Atlanta so you can be seen by one of the best for ALS.

I hope to heck it's not ALS! But shame on your doctor for not taking him seriously. My husband and I diagnosed the ALs in him before we went to the first neuro. With information abundant on the internet I think sometimes "ordinary" people intimidate doctors because we know more about some things than they do, (and general neuros do not always know too much about ALS) and besides it's your husbands life at stake here! Be aggressive about a definitive diagnosis.

Please let us know how your situation goes. My husband has been to Emory twice now and we are grateful they are there.

I know this is a very difficult time for you. We will be thinking of you and wishing you the best.
CJ

 

[asmileaday]

Thanks to all of you for your response. I have talked to my husband and he is willing to go to an ALS specialist.

I know that the one in Atlanta is really good. Does anyone have any information on the clinic at MUSC in South Carolina? That one is much closer.

Also, when my husband told me he had muscle twitches I thought he had one or two a day. Which seems like a lot to me but after questioning him I found out that he is having them about 100 times a day. When they first started (January '07) he only had a few of them every couple of days. Does this seem like a lot? My husband's doctor said people have benign twitching all the time that it is nothing to worry about.

 

[brooksea]

ASMILADAY

don't know about clinic in SC.

muscle twitching is constant in my husband. not being an expert i would say 100 times a day is not " a lot " in ALS.

i hope you can get to the bottom of his problem real soon.

cj

 

[Jamiet]

I don't know what to tell you, except, to get to an MDA clinic. Muscle twitches are usu. progressive in ALS, and it's really hard to "count" them, at least for myself. I think a better qeustion to your hubby would be ... "are they constant now"? . I use to have one here, one there and now, it seems as if its all the time, somewhere.

In conjunction, with the other items you note, he does need to be seen by a specalist in neuromuscular diseases. ALS is very rare, so your chances are very good it's something else. I hope so. I'm 32 yrs old and still undiag, but have done enough research to jsut about be a neuro....or better yet, probl know more than most of the local neuro's we've seen, and so, i understand that we are all young, it's unexlainable....keep strong....

Good luck and keep us informed!

Rgds,

Jamie