Please any answers that could help we have three young children?

[Deborah Ann]

My husband started out by the tingling and numbness in his right hand. After 4 months give or take a couple of weeks he started dragging his feet. Then his knees started to bother him. He went to his brothers ( My husbands brother is a General Surgeon )friend a neurologist that preformed an EMG and other test from his office. The doctor told him he needed bloodwork to see if he had an vitamin defiencey and an MRI of the spinal neck area to rule out tumor, slipped disk etc. He ruled out all of these and the EMG of the 4 areas upper and lower extremities is leading the doctor to think it is ALS/MND but hoping it's not so the doctor ordered more blood work. I begged my husband to do the blood work and find out what is wrong because we have three small children ages 6, 8 and 10 and we need him. After a couple of weeks he finally did the blood work. Three weeks later the doctor got the results and said it was negative and he is leaning more towards ALS and has told us he has no more test to run he advises us to get a second opinion from a specialist and he will help us to get in. My husband then found out this same doctor mis diagnost a lady with MS so now my husband says he doesn't have anything and he's not going to any doctor, now 4 1/2 weeks later my husbands right ankle his muscle has collasped he fell down and I told him he needs to get another opinion. He tells me he will today, but we will see. I'm scared, I love my husband, we have been together for approx. 14 years, we have three children and I don't know what to think or do. My husband is dragging his feet even more slowly now and this all started approx. 81/2 months ago. The advise I'm getting from my 72 year old Uncle (his wife died 2 years and a few weeks after she was diganoisd with ALS) My Uncle says it does not sound like Als because it effected his wife in both sides, its effecting both my husbands knees but the muscle deteration is only in the right side. An older lady friend of mine (we just made our friendship earlier) said her husband had the same symptons my husband has, ( right side only )and she took him to Duke University for answers, they did a muscle biopsy and said he had MS and he survived 14 years the last three being his worse. I guess what I'm asking for is, IS there anyone else with the same symptons and it was ALS? IS there another wife struggling with her husbands hard headness on getting a second opinion? Am I being paraonoid with wanting that second opinion? I've cried for weeks in the beginning after my husband goes to work and the children are in school. I put my emotions on hold for the three weeks we were waiting on the blood test results. It's been 41/2 weeks since we were told that his doctor is leaning towards ALS and to get a second opinion, I'm now back to crying again and the scared feeling is back.

 

[Alyoop]

So sorry for this awful predicament. Men can be a bit stubborn. You do need a second opinion. MS is hard to diagnose, and is notorious for getting Mis diagnosed, so don't let it discolor the opinion of the neurologist. If all the tests are normal and the EMG points to ALS. Then it needs to be investigated early. It's not always symmetrical. Also MS will not show a distorted EMG. It shows up on contrast brain & spinal MRI. A muscle biopsy will not diagnose MS. Be careful to listen to the doctors and not friends and relatives, they always like to have an opinion.

Best wishes
Aly

 

[notme]

HI

What Aly said is true. MS is diagnosed with Evoked Potentials, MRI of brain and spine and Lumbar punctures--and even THEN, it can take years because of the criteria for diagnosis.

I had an extensive conversation with the ALS society today on the phone--a diagnosed requires a second opinion, according to her. For me personally, she's recommended I see an ALS specialist, rather than just any neurologist--as one already suspects ALS. I'd give the same advice to you.

Contact the ALS society. They have counselors in all states, I believe. They can point you in the right direction--but they can NOT diagnose him, of course. They can help you with questions.

As to whether or not ALS can begin just affecting one area to begin with--the answer is yes, it can. Another question i asked today--because my symptoms started in one hand.

ALS is a diagnosis of exclusion. MRI's need to be done to rule out cervical issues--as well as lumbar issues. Labs are done to look for other things--and EMG/NCV are done to see if the nerve problems are showing.

There are over 40+ muscle/nerve conditions according to what I was told today--so there are many possibilities. No two people have the same symptoms with ALS. Some have their first problems with their breathing. Others with speech. Still others with arm or legs. Even progression is individual.

I'd be concerned enough to see an ALS specialist--but don't give up hope--there are many possibilities. Hope that helps a little.

 

[pumpdoc]

If he as ALS what are you going to do? It is 100% fatal, you have to buck up and be strong for him and children.

 

[TedH5]

I am sorry that you are in this situation. It is obviously a very difficult predicament. The best advice I can give you is let the Dr's do their work and if they tell you ALS make sure you get a second opinion. I hope and pray that it does not turn out to be ALS if unfortunately it does remember there is life after diagnosis. Certainly crying is OK and most likely would be healthy for you and your husband to share a cry. Just keep in mind that the next day the sun will rise and so will you and your husband. Of course we are way ahead of ourselves here it can easily turn out to be something other then ALS. Please keep us updated we are here for support. I hope and pray that your husband receives a diagnosis besides ALS.

 

[KC2U2]

I began my diagnosis process saying that I could handle anything but ALS. As I went along and the diagnosis was given and then confirmed by an ALS specialist, I learned that I can handle that too; it ain't easy but life does go on.

Do whatever you have to do to get him to see an ALS specialist, even if you have to make the appointment. This is important because if it is not ALS you and he will both be out from under a lot of stress and he can work on getting healed. If the diagnosis is confirmed, you and he will want some time to process this and to begin to find out what it means for your family. You'll want to treasure time with your little ones and make sure you are getting all the help you need. Sure hope, it's not ALS but either way we're here to help.

 

[notme]

Denial is part of the process of grief. It's a normal reaction. If all else fails, explain to him that his not being willing to be tested is unfair to you and your family.

The unknown is often a worse place to be mentally than knowing. No one in their right mind wants to think they have ALS. But, if he does, there are things that can make your lives easier.

Perhaps you could contact the ALS society yourself. They do have counselors that will help. I had the local one here spend over an hour on the phone with me today. They are there to help.

Darn hands. Hit the wrong button. Also remind him that if it IS NOT ALS there is a chance that he has something that can be treated--and that denying a problem could be preventing treatment on a curable condition.

 

[CoachMeg]

I am so sorry! My husband is 44 and we have two kids, 10 and almost 6. I can sympathize with your fear and concern. It took quite a bit of nagging to get my husband to the doctor. I am so glad we did. Even though the diagnosis is ALS, we know what we are up against. We know our time is limited. And we are doing everything we can to make memories - lots and lots of happy memories. And, getting all of our affairs in order so that the kids and I will be able to live our lives to the fullest.

If you have health insurance, get in to see the doc asap. Get the referral for a specialist. There are so many resources available for you and your family that you don't have to go through this alone.

I wish you all the best.
Love and light
Meg

 

[Ms. Pie]

The waiting is the worst. I'm sorry you have to go through all this. I know it's terribly frightening. Like Pumpdoc said ALS is 100% fatal but so is life itself. Be strong Dear. Face the future with courage. Take care of yourself. Don't make his diagnosis your whole life. I am a believer of second opinions but if he doesn't want one then that's that. Keep posting your concerns and questions. There are a lot of caring, knowledgable, and good people on these boards. You are in my thoughts and prayers.

 

[Kitchener]

Hi Deborah
I really feel for you. I am in a similar position to your husband - two young kids and in the process of being diagnosed with ALS. I'm not out of chances yet, but the psychological toll is very high. You need to consider that the laws of probability are on your side - ALS is a very rare disease and is mimicked by many other symptoms. Your husband obviously has plenty wrong with him (physically), but it could well be something totally different. The medical profession I have noticed is driven by good intentions but ultimately (with a few exceptions) treat the afflicted as specimens. ALS looks like a devil to diagnose, but realistically once the doctors are sure, so are you. All I can say to you is keep fighting, keep playing the probabilities (ie. that it isn't ALS) and keep loving life. And keep a bottle of good champagne in reserve just in case you get the news that things aren't as bad as you fear.
Good luck!
Kitchener

 

[GMaras]

So sorry, my father originally started dragging his foot about 2 yrs ago we took him to the doctors and they said he had diabetic neuropathy, we then saw him getting weaker and weaker, and found a new neurologist said nothing was wrong, my mother and I knew something was wrong, we finally went to another neurologist who said it was ALS. He send us to an ALS Clinic and they confirmed we waited almost 2 yrs to get an answer, I hope your answer comes sooner please make sure they do a muscle biopsy to rule out all other diseases that are like ALS, if he's is taking ANY STATINS please make sure he stops them as they accelerate the process. I hope your doctors give you better news. I will keep you in my prayers.