My husband is being tested....

[BethU]

Tag ... that is mighty, mighty quick. Have they done any blood work? There are so many things that can mimic ALS it usually takes quite a while for a diagnosis, because they have to rule out a ton of stuff.

I am no medical expert ... hope Wright can help you out here ... but it is my understanding that a "dirty" EMG does NOT diagnose ALS. Other conditions can produce the same results on an EMG, and have to be eliminated before a diagnosed of ALS can be given.

There is a protocol called something like Escorial (sorry ... I am NOT an expert), listing conditions that must be met for a diagnosis. Usually, narrowing it down to ALS takes quite a while.

Get the second opinion ... there seems to be undue haste here.

GOOD LUCK!

 

[tag0620]

Thank you Beth!

I sure hope this is the case...it just feels like everything else is being dismissed.

I don't know if it's denial, or eternal optimism, or the like...but in my heart...I don't feel like this is right.

 

[brendapals]

hey tag,
Bless your heart.

I don't know what to say, except please, please do not think you are in this, whether it ends up really being ALS or something else, ALONE. We are on here for you, and also call the local MDA and ALS chapters and get him registered.

I know the questions will multiply, but it's so important to just try to enjoy the holiday weekend with your family, and be thankful for what you have.

You and your husband are certainly in my prayers,
Never give up,
Never let up,
Never lose faith,
brenda

 

[wright]

I am so sorry that you, your husband and your family are having to go through this. My thoughts are with you.

It appears as if the EMG of his upper body has come-back with evidence of active denervation and reinnervation, otherwise the neuro would not have diagnosed him. It is difficult not to diagnose someone with both lower and upper limb findings such as that, along with brisk reflexes.

However, you did say that his reflexes weren't that brisk, so they might "normally" be that way. If that is the case, then there is a remote possibility that he could have multifocal motor neuropathy (MMN) or chronic inflammatory demyelinating polyneuropathy (CIDP) for example, both of which are treatable. The other possibility is a variant of ALS called progressive muscular atrophy (PMA), which tends to be slower progressing than ALS.

I would certainly get a second opinion and if need be, a third opinion as well. Lean on us in the meantime and please take care.

One question for you: did his foot drop resolve after his surgery or was it always present from February when he was training for his marathon?

 

[planningguy]

Tag,

Who did your husband see at the U? Was it Bromberg?

Robert

 

[tag0620]

Thank you!

Thank you Brenda! The kindness is what will get us through! I will take you up on it!

Thank you Wright! The foot drop has been present from Feb '07 on. Do you think I'm grasping at straws then to hope for some strange combination of injury and virus?

Hey Robert, I've read some of your posts and saw that you were in WY and saw someone in UT so I was going to ask you if was Bromberg. Yes it was. What did you think?

Tracy

 

[planningguy]

Tracy,

I saw Dr. Singleton who is in the NMD group with Bromberg. He was pretty pleasant to deal with, and seemed pretty knowledgeable. The only thing that I wish had been different is that his fellow conducted the neuro exam, and she seemed to be in a hurry.

Bromberg is the ALS expert at the U, and right now neither of my neuros think it is ALS. There is another member of the forum (from Heber City I believe) whose husband also saw Bromberg along with a specialist in San Francisco. Her login is "clewbcg," you might want to PM her if you have enough posts. Her husband was ultimately diagnosed with ALS so they attend his clinic regularly. Overall they have been impressed with his patience and compassion.

My main reason in asking is in case I end going back to a NMD specialist (some of my symtpoms have continued to progress). Its the same trip for me to go to Denver or SLC (SLC is a little further away, but we have family nearby). With such a snappy diagnosis I was just curious if it was Bromberg.

I really do hope that one of the other possibilities pan out for you.

Take care,

Robert

 

[tag0620]

Hey Robert...

My husband brought to my attention that I can't "shoot the messenger" as I was really ticked yesterday.

My husband pointed out that when we play music for funerals at our church...we have to detach a bit to do our "job" or ministry properly and that's probably how it is with Dr. Bromberg.

It's just that this news was thrown at us so quickly...I wanted to be mad at someone and Dr. Bromberg is getting the brundt of that (behind his back of course :twisted: ) I think the term a**h*** came out of my mouth several times yesterday.

But hearing about the support system that they have set up at the U...being told that we can call (actually page if it's late) the woman who works under him 24/7 if we have needs...knowing that they work hard to make sure we'll pay minimally for our care...knowing they have people come out to our house to map it out for maximum mobility..........he helped set this up and run it...so he can't be all bad and I'm sure we'll see that as time goes on.

 

[planningguy]

Tracy,

I don't blame you a bit for being frustrated at such a stressful situation. I can't even imagine what it must be like to be an ALS specialist, and have to routinely give people such life altering news.

Robert

 

[CindyM]

I am sorry to hear about htis turn of events, Tag. It is a lot to deal with all at once but I see yuou have already made some friends around here. Reach out any time you feel the need. Cindy

 

[Jamiet]

So sorry to hear of this so quicky.

I have one suggestion, don't stop looking for answers, with two rocky mountain spotted fever test, there may be another answer. he wouldn't be the first to have something that resembled ALS that turned out to be treatable.

I would see a doc that specalizes in that, just to see what their take on the sitation is.

Good luck and god bless

Rgds,

Jamie

 

[sdsyd]

Wow- what a shocking story. I just read it today and with all of the other things going on, I thought surely it was from the other stuff going on. This is an amazing place to be, though I am sorry you have to be here in the first place.

Best wishes!

Love,
Cindy

 

[tag0620]

Well...we're not rolling over....

Thank you for your replies...it's been a roller coaster...

We're not accepting this diagnoses...

We've been told by numerous MD's and neuro's that this is an awfully premature diagnoses...so we got into the Mayo Clinic in Scottsdale at the end of February.

In the present...my husband is still on his antibiotic for RMSF and has even had the state of Utah health department call to follow up with him as a recorded case with this second diagnoses using different protocols...we don't know if this is part of the problem, but we're not overlooking it just in case it is.

We also have a great MD who listened to our theories on this accident/injury, the muscle wasting, and the use of anabolic steroids...and he got him on a RX for anabolics which he started last week and is already seeing differences.

So...he stopped the Rilutek when he started the steroids...and will not be taking it unless we have a confirmed second opionion from the Mayo.

Please keep us in your thoughts and prayers and know you are all in ours!

Tracy

 

[laurel]

Hi Tracy,
I'm puzzled over you saying your husband is taking anabolic steroids. I know that corticosteroids are very effective for things like CIDP, vasculitis, etc. What is the rationale for anabolic steroids?
Laurel

 

[tag0620]

It is an oral anabolic that has been used for patients with AIDS, burn victims, and patients with severe spinal injuries who have had severe muscular wasting due to their conditions or injuries....it's not a steroid used for inflamation....but one used for building muscle (just like bodybuilders would use an injectable).

From what we have been told...if this is in fact als...there will be no change or regeneration from these...but if it's from the injury...we may see some progress.