trichothecene poisoning or ALS

[Heather H.]

My Husband was told that he has ALS and had 5 years to live. Later it was discovered that he has the toxin trichothecene. After 5 rounds of plasmapheresis he was ABLE TO STAND UP AND TAKE A FEW STEPS. But(for some reason I cannot fathom) the doctors said that was NOT AN IMPROVEMENT but a "fluke that happens with all people with predominantly paralysis of the legs below the waist." Then the treatments were stopped, the re-started for another 5 rounds and again my husband walked, only this time for 100ft. Again we were told that this is no improvement but "just extra effort on my husband's part."
We are at our limit of anger, grief, knowing that something can be done to save his life and no one cares. The treatments work but we can't get them re-started. My husband of 10 years is going to die and I can't do a thing to save him. I can't take it anymore, who do I have to call for help?
The ALS clinic in Nashville is a joke and a rip-off. What do they do there you ask? Nothing. We begged for help with having ramps built, sorry we don't do that here. Can we get some help for a power wheelchair because he can no longer use his scooter? Nope, not here you don't. How about some devices for around the house..oh say like a..ah..hospital bed? You guessed it, nope, not here. But we do have live music and a free lunch. Free lunch!? How about you keep the lunch and help me put food on the table at home? Sorry, don't do that here.
It is ripping me apart that I can't save him. I don't think I could live without him, or want to live without him knowing that I could not save him or ease his pain.
Help.

 

[SuzyQ]

Heather,

Please know that you're not on your own, your post will be answered when everybody's woken up. I'm not sure of time difference where you are but you will get lot's of support here. I cannot throw any light on the issues in your post as I have absolutely no idea! I just wanted you to know that I'm thinking of you right now. x

 

[Heather H.]

Thank you. I need help.

 

[awieleba]

Hi heather,

I am sorry for your frustration. Have you asked your Primary care doc about what to do? Maybe they can help you get a Px for the IV meds again. If you have insurance, they should cover it? I dont understand why they care, If you want to do it for longer than 5x (and I have read that people have to do it for weeks and weeks) and your insurance will cover it , why do they care? I have read that you either have an improvement or not, it sounds like he did, however small. Did he 'feel' a difference, he is the one that would know, not the doctors. He knows his body.

did they rule out or look at cipd, gbs, and all those other things? how are reflexes diminshed or hyper?

I hope that you get somewhere help.....I really do. This is horrible to be treated this way in the light of all that you have to go through.

my thoughts and prayers are with you.

april

 

[Al]

If he has has a diagnosed of ALS the MDA or ALSA should be able to help with equipment, chair bed etc.

AL.

 

[crystalkk]

Heather,

Have you been in touch with CDC reguarding the trichothecene poisoning.
Do they know how he was exposed to the trichothecene?

You need to find a dr that is more experienced with the trichothecene poisoning

I would fight with all my might for more plasmapheresis treatments!

 

[L4dybugg]

Heather

That is awlful.

I am really concerned now, that is the center they are going to send my hubby in Nov. the one in:

MDA/ALS CENTER AT VANDERBILT UNIVERSITY MEDICAL CENTER

to a Dr

Peter D. Donofrio, M.D., Codirector

1301 22nd Avenue, South #3603
Nashville, TN 37212

Is this the same place?

My husband is having ALS symptoms, and he just had a muscle biopsy a month ago, and it came back as: chronic denervation and reinnervation.
So they are sending him there.

Can you tell me what we can expect when we get there? Any info would be so much appreciated. You can read more about my husband on my thread. "Update on my Hubby" in "Do I have als, is this als" forum.

Hugs Lori

 

[L4dybugg]

Heather

I am so so sorry for what your family is going through. I can't even begin to image. I hope that you both get the help you both so deserve.

That is such a shame.

 

[brooksea]

Heather,

April had a great suggestion about the CDC! I would think they would be concerned about the source of the toxin. What about you? Is there a danger that you were exposed also?

Have you contacted your Public Health Department?

I would assume the toxin was verified? If the diagnosed was changed from ALS, then I believe other healthcare professionals that specialize in such poisoning should be consulted.

If they are now saying it is ALS, then all the doc at the ALS clinic has to do is write rx for wheelchair, etc...Also, like Al said, ALS Association should be helping you with this. They have loaner closet that could help you out til you could get the devices through your insurance or Medicare insurance.

I hope you will please let us know how y'all are doing and will let us know if you've already tried these suggestions. We want to help in some way!

 

[Heather H.]

My God! Yes it is the same doctor and the same place! You will have to spend all day there going from room to room to see every doctor under the sun, will be told of devices that will be a big help but that they cannot provide. Everybody will be soooo cheerful-"and how are you doing today?","is everything ok today?" There will be live music of some kind, children singing, a paino player, a New Age Native American playing a flute, free coffee, free lunch and you will be told how much closer to death your husband is and to come back in 3 months! Also, you may spend the whole day there and never see a Neurologist and be told to come back some other time! There is no help there at the clinic, we will never go back. All I can tell you is to find anyone but him. We now go to a doctor in Franklin, I could give you that info if you want.

 

[Heather H.]

I may have been. I have been told that I have RA and Peptic Ulcer Disease. I have lost about 26 pounds and I hardly eat anymore, have no intrest in food and nausea. They won't test me for the same thing because because they don't believe the toxin is there in the first place. They would to justify why I am being tested and since ALS cannot be passed from person to person... wonder why I have an ulcer?

 

[andyvaughn]

Heather,
I am so sorry for your frustration. Are you not able to proceed with plasmapharesis due to insurance reimbursement, or is your husbands doctor not willing to write orders? If you can clarify that for me I can better offer suggestions, depending on which it is.

Do you have insurance? If so, your insurance will pay for a wheelchair, hospital bed, etc. The ALS clinic or your primary care doctor can refer you to a power chair specialist, who will likely also be able to supply much - if not all, of the DME (durable medical equipment) that you need.

Sometimes, but not always, the ALSA and the MDA have loaners of ramps, power chairs, etc. It is dependent upon what they have in their loan pool... maybe you should go higher up with either organization, tell them you desperately need this equipment, and can they go outside of your geographical area to provide loaner equipment?

ALS is hard, I know... it sometimes seems like EVERYTHING is a huge fight. I am a case manager by profession, so I luckily know the system, how to use it, and knew that I have to pursue all of Jim's equipment needs in advance of needing them. Even so, it hasn't been an easy road... we just got his new power chair this week, but the process started in early August! We did receive a loaner power chair from the ALSA until our chair came, in fact, we still have the loaner, we are waiting for a incline wheelchair stair lift to be installed, so now the loaner is upstairs and the new chair is downstairs... we will return the loaner as soon as we have the incline lift.

I will try to help you to the best of my ability Heather, if you clarify why you aren't getting any more plasmapharesis, I can start there by offering suggestions...
Andrea - wife of Pals Jim

 

[crystalkk]

Please try and find another dr that might be able to help with the testing.

Did you talk to your family dr about this? Maybe there is something he can do about retesting your husband and testing you.

Why was he tested in the first place, if they don't think the toxin is there.

 

[L4dybugg]

OOh my goodness!

My God! Yes it is the same doctor and the same place! You will have to spend all day there going from room to room to see every doctor under the sun, will be told of devices that will be a big help but that they cannot provide. Everybody will be soooo cheerful-"and how are you doing today?","is everything ok today?" There will be live music of some kind, children singing, a paino player, a New Age Native American playing a flute, free coffee, free lunch and you will be told how much closer to death your husband is and to come back in 3 months! Also, you may spend the whole day there and never see a Neurologist and be told to come back some other time! There is no help there at the clinic, we will never go back. All I can tell you is to find anyone but him. We now go to a doctor in Franklin, I could give you that info if you want.

Yes please do. Where is Franklin located? In TN?

My husband has not been diagnosed yet, and we have to depend on this place to do it? EEEK!

But we have come up against a problem, don't know what we are going to do, our insurance does not pay for this place, because it is not on our insurance plan, and out of network. We have Cariten. And because of that, we will have to pay 40% after the 500.00 deuctable. We would have to pay that up front. Which we do not have.

But I don't think our insurance would even cover Franklin, is that at an als specialist also?

Is that where your hubby was first diagnosed? Was that his first time being there?

I am so so sorry for all of these questions, after what you all are going through.

All of this is so new to me, and don't hardly know which way to turn. I am just so scared my husband has it. He is now starting to have trouble with his breathing, he says like he can't get enough oxgen. He is sooo tired and in so much pain. He can not even sleep at night he hurts so bad. We are holding on to faith, that it is not ALS. My husband's first cousin passed with it at the age of 34.

My heart really goes out to all of you that are going through this.

 

[Heather H.]

A funny thing happened on the way to the doctors...
The Neurologist said that he knew of a doctor who was doing some research in the field of trichothecene poisoning or ALS. What was there to loose right, my husband is going to die so why not see this guy. THAT doctor ran the blood tests that found the toxin and told us of the way to get rid of it.
Then the Neurologist denied that he sent us there or that he EVEN knew him!
I hear the music from the Twlight Zone.