update/input?

[sdsyd]

Hi guys.

It took awhile but I did finally recieve the report from University of Colorado and will post some of it for help interpretting for those who feel comfortable helping me interpret.

I am going back July 9th to see her again as per my local neuro. I did finally quit my job, my Grandma passed away a little over a week ago and we had her funeral Monday. I am sad that she is gone, but I know she is no longer suffering, which is a great comfort to know she is now at home where she belongs. I have been to the nursing home 4-7 times a week since January and we spent the last three days and nights along with my two sisters consistantly there and were able to be there when she passed, while I was reading Philippians aloud. Anyhow- thanks u guys for all your help and support along the way.

I began PT again and next week they will cast me for Bilateral Platinum AFO's, as hesitant as I was to do this, the pre-fab versions definately helped me walk better, so I will have to LUMP it and be confident wearing them with shorts this Summer and just be glad to still be walking- RIGHT?

Okay here are the findings from the EMG/NVC that were abnormal.

reduced sural potential
focal slowing in ulnar nerves
asymmetry of peroneal F waves
slowed conduction velocity across wrist
prolonged distal motor latency (right ulnar)

recruitment pattern in ulnar innervated flexor digitorum profundus and first dorsal interosseous muscles reduced without definite morphology changes

She states that she does not have a diagnosis for my neurological disorder but suspects it is a demyelinating process with possible underlying autoimmune mediated.

This is the part that "gets my goat" When she suggests CIDP or Multi Focal Motor Neuropathy as her primary concerns, she adds to do the spinal tap to check for the antibodies and if they are positive to go ahead with IVIG. she goes ON to state that EVEN without the GM1 antibodies, it would be worth an emperic treatment trial to see if she improves.

When my local neuro got the results from the spinal tap- he said he consulted with her and that since the antibodies were negative , the IVIG would not be without some risk and did not feel comfortable administering it. SAY WHAT?

Thanks for the advice to get these records. Hope everyone is hanging in there and I hope to stay in touch a little better on the boards.

Love,
Cindy

 

[ktmj]

Dang Cindy - how confusing. I can't comment obviously on the test results - over my head.

Are you saying the specialist was for the treatment and the local is now not? I would be calling the specialist and asking for an explanation. If the specialist is really thinking CIDP or something to me it would be worth the risk to go ahead. Don't wait until July 9th.

Best wishes!

 

[mare]

My husband had a spinal tap to R/O multifocal motor neuropathy. Our neuro (ALS specialist) did not feel it was MMN, but said we should check- however, he did say that the antibodies are not always present, and the absence of them does NOT r/o MMN.

There were no antibodies; he still recommended for husband to try IVIG. He felt there was little risk, compared to the possible benefits. Yes, it is an IV infusion of blood products with the possible side-effects that come with that; i.e.- headache, fever, muscle aches, even rash ( Al has stated he had quite a break-out of hives!), but these are all manageable. I even checked with my family dr. and he felt risk was minimal.

This seems to be common for the specialists to do; if you recall Tom (tmasters) had this, and a few others I think. It can help in differentiating MMN and PMA. (MMN, like PMA, only shows lower motor neuron pathology). But, if your neuro is considering CIDP or MMN, I would think this applies as well. I recall our neuro saying antibodies frequently are NOT seen.

My husband had 3months of IVIG therapy- no improvement, but no progression. He had another round of 3months but he did have slight progression on his next clinical visit, and that was the deciding factor. The only reaction he ever had was a slight headache, during one infusion. It is recommended the patient takes tylenol and benadryl prior to each infusion.

The biggest factor is the cost - thankfully, our insurance covered the whole thing (not sure if this is true for all)- the total for the 6months was $120,000 ! (no, that is not a typo!) But, I think the neuro can make their case to the insurance co. to cover this.
(although, I am not qualified to make that statement- just what I'm thinking)

Just thought I'd share our experience; hope it gives you a little info. I'd give more weight to the specialist opinion, then the local neuro.

Good luck !

 

[crystalkk]

Cindy,

I'm sorry about the passing of Grandma Rose.

I would definately call the specialist, about what was written in the report.

Walking with AFO's is definately better than not walking at all...........

I have learned to request copies of all my reports.

Please hang in there,

 

[lovelily]

Hi Cindy ~ My sympathies to you and your family. May she rest in peace.

I wish I had a rocket scientist answer about your other dilemma, but alas, I don't. Wishing you the best, as you make your decision!

 

[Zaphoon]

Cindy,

Please accept my condolences on the loss of your grandmother.

It looks like the doctors are narrowing things down for you. I hope you are able to get the IVIG treatents.

Zaphoon

 

[tag0620]

Hey Cindy,
I can't help on the emg findings...but I wanted to let you know how sorry I am about the loss of your grandma!
(((Hugs)))
Tracy

 

[planningguy]

Cindy,

My symapthies on your grandmother. You described her as an amazing woman.

Hopefully you can get this IVIG sorted out. I wonder if its the cost more than the side effects. Doctors offices probably enjoy wrestling with insurance companies as much as we do.

Take care,

Robert

 

[Sammantha]

Hey Cindy, the EMG definetly sounds like it is more nerve conduction related. If they believe it is autoimmune they should have you on steroids or something, to slow down the progression! It could not hurt! What are they waiting for?! I guess i am a little touchy about this but how can we not be!

 

[lydia]

Cindy, I just saw that your grandmother passed away. I know that you made a big difference in her last months.

That is strange your local neuro would be uncomfortable with the trial, maybe he doesn't really get it? Do you need him to be comfortable to proceed with it anyways? Can't the other neuro prescribe it? Sorry if my questions are already answered...

Lydia

 

[rose]

Cindy,

I'm sorry your post slipped past me. You have my sympathy in losing your grandma, I know she meant so much to you, and filled many roles in your life. She, I'm sure, knew how blessed she was to have such a devoted granddaughter as you have been to her.

Why you've not been started on some sort of immunosuppressant therapy is puzzling. If not IVIG, why not at least prednisone? I'm no help with interpreting test results, although I'm pretty sure that conduction reduction is something that helps to rule out ALS. Why don't you send Wright a message asking for him to read your post?

Go for those AFOs, I felt selfconscious in mine at first, but it does not bother me anymore.

 

[wright]

Hey Cindy

I also wanted to extend my condolences for the passing of your grandmother. It does sounds like you realize it was a blessing for her and your family though, so your great attitude will get you through the grief and on to concentrating on fond memories of her.

Regarding your EMG:

The abnormality in the F waves, the prolonged distal latencies and the slowed conduction velocities all point to some type of demyelinating condition. Given those findings, the reduced recruitment pattern in your intrinsic hand muscles appears to also be due to demyelination. Reduced recruitment patterns can also be due to denervation or a myopathy but given there were no positive sharp waves or fibrilations found or any type of myopathic findings, they can't be the culprit. I can't really comment on the reduced sural potential without knowing if it was a reduced sensory nerve action potential (SNAP) or a reduced compound muscle action potential (CMAP). How is your progression (weakness and/or muscle atrophy)?

Bottom line: I'm not sure if ALS is still a concern for you, but if it is, that is definitely not the EMG of someone with ALS. There was no active denervation (positive sharp waves and/or fibrilations) and no reinnervation (large and/or polonged motor unit action potentials). That is the EMG of a peripheral neuropathy. It's a bit puzzling as to why you are not getting any type of treatment, especially given your progression. I would definitely press your neuro for answers.

 

[sdsyd]

Thanks for the input guys. Yes, I am hoping that July brings light to answers. Its only a month away. I am not concerned about ALS anymore. doorbell ringing-
more later

Love,
Cindy