Update:

[wright]

Hello again

Well that certainly paints a bigger more thorough picture.

The reason the initial report had demyelinization as a possible symptom was because the NCS showed slowed conduction velocity of your nerves. Unfortunately, the slowed conduction velocity was due to the degeneration of the nerves and not from demyelinization per se. That is more than likely the reason your current neuro is leaning against CIDP.

You said you are getting tested for SMA: it could be a possibility but its progression is typically much slower.

Has there been any mention of multifocal motor neuropathy (MMN)? Given your widespread denervation and diminished reflexes, it is a possibility. This is also treated with IVIg.

Your incontinence along with your lower motor neuron problems could possibly point to multiple system atrophy (MSA). Are you incontinent because you cannot "make it" to the bathroom or is it true incontinence?

Progressive muscular atrophy (PMA) is another possibility and fortunately it typically progresses slower than ALS.

A distant possibility is something in the autoimmune family that is progressive.

Remain as hopeful as you possibly can and please keep us posted. Take care.

 

[Micheline]

they did rule out autoimmune diseases, sorry about that. As far as my incontinence, it is both. When she prescibed the IVIG, she was "giving it a go, But I(she) don't think it will work". We are still holding onto a little miracle. I did call the doctor today, again. And still no answer of my biopsy, now going on 1 month of waiting. That is the worst part of this whole thing, we are at my 1 year not diagnosed.

thanks for the info.

 

[laurel]

they did rule out autoimmune diseases, sorry about that. As far as my incontinence, it is both. When she prescibed the IVIG, she was "giving it a go, But I(she) don't think it will work". We are still holding onto a little miracle. I did call the doctor today, again. And still no answer of my biopsy, now going on 1 month of waiting. That is the worst part of this whole thing, we are at my 1 year not diagnosed.

thanks for the info.

Micheline,
I know that you say they ruled out autoimmune diseases, but that does in part seem based on you not responding to a loading dose of IVIG. After participating for months on the CIDP forum, it is very evident that many people do not respond to IVIG after that one loading dose. Many have had to have about 3 months worth before they had any response.

One thing that we have learned in the process of my husband being diagnosed is that the diagnosing is very iffy at best. My husband has CIDP MADSAM with a caveat that he has an unusual variant of that one. The top neurologist at St. Paul's couldn't come up with a diagnosis. And the Neuromuscular Disease Unit at VGH did have ALS down as a differential diagnosis in the beginning process of diagnosing him. In your situation, I can't see that there would be any negative to saying that many people on the CIDP forum had absolutely no response to one loading dose of IVIG and that you would like to try it for 3 months. MMN does mimic ALS in many ways--yet it is very responsive to IVIG. You have nothing to lose by being assertive, and lots to gain if the IVIG works. Just my two cents Micheline and Steve as we have gone through lots of ups and downs getting a diagnosis, and I have been quite assertive or we would still be connected to the first neurologist and my husband would be worse off than he is. (he wound up with severe wasting, atrophy, and loss of use of his right hand and that wasting is basically non-repairable while we spun our wheels being polite and accepting carpal tunnel as his diagnosis). We got the wheels turning by paying $900 at the Specialist Referral Clinic in Vancouver. That doctor recognized within 10 minutes that my husband had some sort of progressive muscular atrophy, and emphatically said he never fit the criteria for carpal tunnel and was shocked that he had surgery for it. Just keep questioning and don't give up to the ALS diagnosis yet.
Laurel

 

[L4dybugg]

Micheline

When my husband had his muscle biopsy, the neuros told us it takes about a month for them to come back, in our case, they sent it to another state. We live in Tn. so they sent his to New York.

But turns out, we got the results back a few weeks before the month was up. So it should be close for you to hear something.

I hope all goes well with you both.

take care

 

[laurel]

Micheline,
Thinking more about your situation. Perhaps a tactful way of asking for IVIG would be to ask if they can 100% rule out MMN. If they say not 100%, then you could ask for a 3 month round of IVIG. I know it is easy to ruffle feathers, so tact is always good <g>. From my reading, there are likely more than a few people out there with ALS diagnoses who indeed may have MMN.
Laurel

 

[Micheline]

Uodate

Well, they finally got my biopsy back. I have to meet my als specailist on Nov. 12th the the GF Stong center. I'm worried, I know Steve is as well. We did finally told the kids last week. Wow...that was the hardest thing I ever did. They were mad(upset) with us for not telling them right away. I just explained to them that I and their dad needed time to let it sink in and for us to research it so if they had questions we would be able to answer them. I said it would have been irresponsible of us if we didn't. We also told them that the doctors have been wrong before so we are hoping they are wrong again.

Thank you everyone, your answers to my questions have helped me out. I try not to dwell on this. I know I have wasted so much time worring, and not living. It's the unknown that is the hardest for me. I think I just need to know and move on with our lives as difficuly as it may be as well as acceptance of what I have so I don't sit here in limbo.

Micheline

 

[L4dybugg]

Would you care to share with us what the results were to your muscle biopsy? And if you don't mind, could you share with us the report?

Best of luck to you and your family

Lori

 

[BethU]

Waiting for the answer is the hardest part of all this. We can't help but worry ... but we will all be with you, whatever the outcome.

Hoping it will be good news.

 

[Micheline]

They won't give it to me over the phone. But when I get it I will post it as it may help others.

 

[laurel]

GF Strong

Well, they finally got my biopsy back. I have to meet my als specailist on Nov. 12th the the GF Stong center. I'm worried, I know Steve is as well. We did finally told the kids last week. Wow...that was the hardest thing I ever did. They were mad(upset) with us for not telling them right away. I just explained to them that I and their dad needed time to let it sink in and for us to research it so if they had questions we would be able to answer them. I said it would have been irresponsible of us if we didn't. We also told them that the doctors have been wrong before so we are hoping they are wrong again.

Thank you everyone, your answers to my questions have helped me out. I try not to dwell on this. I know I have wasted so much time worring, and not living. It's the unknown that is the hardest for me. I think I just need to know and move on with our lives as difficuly as it may be as well as acceptance of what I have so I don't sit here in limbo.

Micheline

Hi Micheline,
Since you mention that they now have referred you to the ALS specialist at GF Strong, I guess this means that they have concluded you have ALS? Do you still have your October 31st appt. at VGH? I am so sorry for what you are going through. I had hopes that it would be MMN. Take care.
Laurel

 

[Al]

Hi Micheline. Don't give up hope yet, or ever for that matter. Just because they are sending you to the ALS Clinic doesn't mean ALS. My clinic in Toronto treats all the motor neuron diseases. They just might want you to be seen by the best.

AL.

 

[Micheline]

nope, not giving up. I am not ready to! Just so much emotions, and trying to work through them. Holding a brave face for my family, that is all I can do at the moment.

I still have my MRI for the 31st.

 

[laurel]

Brave face

nope, not giving up. I am not ready to! Just so much emotions, and trying to work through them. Holding a brave face for my family, that is all I can do at the moment.

I still have my MRI for the 31st.

Oh Micheline you don't have to keep a brave face for your family. Just be you and cry and rant if you need to. They will understand and may cry with you, and that may be what you all need. I will be praying for all of you.
Laurel

 

[jennibf]

Yes, I'm freaking out AGAIN.

EDITED because I posted in the wrong place...I didn't mean to hijack a post.

 

[CindyM]

I hope you get good news at the ALS clinic, Micheline. Like Beth says, we will be here for you no matter what...Cindy