Need guidance - just diagnosed

[glimmer]

Thank you for your posts, my husbad too was just diagnosed with ALS by his Neurologist, yesterday. We are devestated and didn't think this would be the problem. We are waiting as well for insurance to approve him going for a second opinion at a Special Care Hospital that has a ALS Center. My question is what are the symptoms of Lower Motor Neuron? My husband who is 36 years old developed slow speech, fasciculations, cramping and losing weight since December 2011. The Neuro tested Blood, MRI and EMG.

The EMG showed abnormality specifically it said: Needle EMG of representative right and left upper extremity muscles shows denervation at an early stage in the form of fasciculations seen in nearl all muscles sampled. This would be consistant with the diagnosis of Motor Neuron Disease.

The MRI said: There is bilateral symmetric signal abnormality within the corticospinal tracts. In this age patient these findings along with the clinical symptoms are strongly suggestive of ALS.

This paperwork and a call to the Special Care Hospital was all the Dr. offered, no instructions or where to turn next other than get a second opinon. We are devestated, we have three young daughters and we are uneducated in this illness and so sick about this diagnosis. Please, if you have any guidance I will appreciate it sincerely.

 

[hjlindley]

Every ALS case is different. Mine is distal, taking small muscles in the hands and feet, but not affecting my speech or breathing yet. It took 3 years to get a diagnosis, finally given by a neurologist at an aLS clinic at a major teaching hospital. Just know that each of us is different. I know you have porbably read the statistics, but there are also people who live with this for many years.

Take a deep breath, make no assumptions about progression, love passionately, an get that second opnion. Work on one day at a time. Contact your local ALS chaptter if the second opinion confirms.

We are all here for you. Look at the ALS website, Mayo Clinic site, and realized that this is not the end of your world today. Good luck, and let us know what the second opinion says.

 

[CGAR]

glimmer,
Your story is similar to mine.
I think, I'm only 40! This can't be happening.

My wife and I flip flop back and forth as to whether this is real or not.
One minute we say, "No, it can't be true", the next minute, it's "Wow, I have ALS"

If your husband isn't on this site, please encourage him to join.
There are many people that will help, both with their experiences, and staying positive.
There are many younger people here that I have really connected with, and it's helped.

I think only people on this site truly know and understand what you are going through.

Having ALS isn't the end, It's only speeding up our plans.

Cheers,
Casey

 

[hangingon1]

Glimmer,
God bless you and help you with this trial in your life. ALS is a kind of learn as you go proposition. The internet, and especially this site is a wealth of knowledge. I have been a caregiver for my wife for 14 months and this site has meant so much to me. There are some very gentle and sweet people on here whose hearts have been wrenched by this monster of a disease. You need the knowledge available her to at least make your and your PALS life a little easier. You can not undo what is done. Saying Why Me? and Why US? will not help, because those are unanswerable questions. ALS can not be quantified because it affects each patient differently. Live one day at a time and do the best to keep your head up. This too shall pass.

 

[minnesota]

Hi Glimmer,
I am so sorry about your appt. findings. You are in good and safe company here. To ans. your ? about Lower Motor Neuron symptoms--- would include weakness, fasciculations (under the skin twitches), and atrophy usually starting in a foot, hand or tongue. Check out the als association on the web and the National Institute of Health for more details. Hope that helps a little!

 

[trfogey]

So sorry that you have have to join our group. Please encourage your husband to join our group as well. Both of you will find a lot of information and support here that you'll need should the second opinion confirm what you've already been told.

The symptoms of lower motor neuron problems are:

• muscle hypotonia -- loss of muscle tone.
  
• hyporeflexia -- reduced or absent deep tendon reflexes.
  
• muscle atrophy -- wasting of muscle bulk.
  
• flaccid paralysis -- limp, floppy muscle that cannot be consciously moved by the patient.

 

[glimmer]

Thank you all for your responses. So many waves are hitting me today. I am ok then I am not. I will get my husband on here in time. He is in so much emotional pain right now. He is 36 and we have three little girls. The special care hospital called today and will get him in tomorrow for the second opinion. It is in New Brittain Connecticut. I will post when I know more. I think this will be just a consultation and from there they will schedule more testing. Thank you all for your kind words, information and positive thoughts.

 

[momap53]

Good luck tomorrow.

 

[Jennifer D]

Hi glimmer,

I just read your posts and I am saying all my prayers for you and your husband! My husband has been going through the same madness for the past year......He just had a muscle/nerve biopsy which is supposed to be the last piece of the puzzle? So now we have to wait until March 5th for the results. I don't know what's worse the uncertainty of not knowing or knowing the horrible truth? I am terrified beyond belief and I can totally relate. Good luck with your appointment

Jennifer

 

[lpcarr]

Glimmer
So sorry you have to be here. My husband got his second opinion and it too was confirmed to be the als monster. We too have three daughters. Get ready for the fight of your life. This forum is wonderful. It brings me comfort everyday. I hope the first opinion was wrong, I will pray for something else. Stay here with us as we all journey together. If they have an ALS center you will be in good hands, They will take good care of you. Please stay in touch and keep us informed. Prays to you both & the girls, Pam

 

[TedH5]

I am very sorry that you and your husband find yourself in this situation. I was 38 when I was diagnosed and I too have 3 young children. You're doing the right thing by getting a 2nd opinion with an ALS specialist. Please remember no matter what happens with the 2nd opinion there is life after diagnosis.

You and your husband will find a lot of support here.

Stay strong and keep the faith.

 

[jb63]

Hi glimmer,

I just read your posts and I am saying all my prayers for you and your husband! My husband has been going through the same madness for the past year......He just had a muscle/nerve biopsy which is supposed to be the last piece of the puzzle? So now we have to wait until March 5th for the results. I don't know what's worse the uncertainty of not knowing or knowing the horrible truth?

Jennifer

I am at that piece of the puzzle too, but have set in motion the clinic, the mindset, preparing for the worst. Plan on the biopsy after meeting with the clinic. My doc does not feel the biopsy will yield much, but after all the testing, why not just be sure. I am waiting for the second set of bloods to come back from my hemotologist as some abnormalities have shown that may indicate I really do need that sural biopsy. But I am not hanging much on the results. It will be a joyful surprise if somethings shows up, but I do not want to set myself up to be crushed again.

 

[Judith Ann]

So glad your husband is getting a 2nd opionion! Take one day at a time! Keep us posted.

Judy

 

[Jennifer D]

Good luck with everything.......FYI, my husband had a spinal tap and it came back stating that he has banding in his spinal fluid, although they say banding is usually in most people with MS he does not test positive for MS. So we are down to the results of the muscle and nerve biopsy results to see if the muscle & nerves are being killed off by some disease or if they are simply dieing off on their own. I can't stand the waiting, but on a positive note he has not gotten any worse since this journey began last March 2011. We have been seeing the Chief Neurologist at Hospital for Special Surgey in Manhattan, he says he will come up with a diagnosis and we will have a plan no matter what.....

 

[glimmer]

I have hope, which is more than I had on the first day we were given the diagnosis. We went and had our consultation with the ALS Center in New Britain and the doctor was so thorough, caring and truly kind. He ordered more testing, bloodwork and scheduled another EMG in March. He said that because of my husband's age, it may not be ALS, however, it may well be, but it is early enough that we have time. And to have hope. So we feel as though a little bit of the pain from the gut punch we received on Tuesday, has subsided to just nausea...if that makes any sense. I do feel confident in this doctor and this facility. I feel that we are in the right place to get answers, and support. And I am so grateful for this forum, your support, advice, knowledge, and stories. We would truly be lost without it.