Update On Hubby

[L4dybugg]

Hello all!

Just wanted to stop by and give an update on my hubby. From this thread : https://www.alsforums.com/forum/showthread.php?t=6203

We went back to the dr today, and the news is not looking good. The Neuro went over the muscle biopsy results, which was: Chronic Denervation and reinnervation.

She did not go into it much about the denervation and reinnervation. She told us that she is "Really worried", and especially since my husbands first cousin died from ALS.

She explained that she is going to be very careful here while we are still in the eliminating process. She wants to do a mri of the spine, and do a 24 hr urine test, also I requested a lyme blood test done, because I know lyme minics ALS. But like she said with his muscle biopsy being like it is that, would not fit the biopsy results.

From looking at her face today, I feel she believes that it is ALS.

She is going to send Andy to another Neuro, she said this Neuro is the top one in the state. Located in Nashville TN. So she is going to call tomorrow and make that appointment and get his slides form the biopsy, and everything ready to send this other dr.

From what she said, it looks like the appointment might be sometime in Nov. Don't remember the new drs name.

Hubby has lost 12 lbs not trying, since last visit to dr. one month ago. His Liver enzymes are still high, muscle enzymes looking better.

Please keep us in your prayers.

Lori

 

[laurel]

Lori, you and your husband Andy are in my prayers. I am so sorry that things aren't looking good. He is so young and this is so devastating. Please keep us updated about how you and he are doing.
Laurel

 

[L4dybugg]

Thank You

Thank you so very much.

I forgot to add above, the dr also wants him to start drinking this protein shake "Creative Powder" she said it will held "feed his muscles".

I found on one of his papers she wrote the name of the dr she is sending him to:

MDA/ALS CENTER AT VANDERBILT UNIVERSITY MEDICAL CENTER

Dr. Peter D. Donofrio, M.D., Codirector in Nashville TN.

 

[L4dybugg]

I hope this is ok...

...I know this has nothing to do with ALS, but

Ladies, some of you might be interested in this:

I do Paint Shop Pro, and scrapbooking it is a hobby of mine, I also make Tags.

A few days ago I made this site, that I just opened:


http://s3.excoboard.com/exco/index.php?boardid=10147

Mostly to help keep my mind off my troubles. It is a G rated site, no adult, or bad language allowed.

It might help some of you Ladies to get your mind off your troubles, you are welcome to join if you like. There are games to play, devotionals, recipes & more.

And you don't have to do paint shop pro, make tags, or scrapbooking to join in.
Mostly just a clean place to hang out, and friendship.

Just wanted to share with you.

Lori

 

[lovelily]

Hi Lori....I am sorry for these results with the muscle biopsy. I wanted to say though, that I had similar results with a second biopsy and I have no diagnoses at this time.

I will keep hubby and you in my prayers.

 

[L4dybugg]

Thank You

Thanks so much for all your prayers it is so much appreciated.

When we go to This ALS Center, which will be about a 4 1/2 hr drive for us.
What kinds of things will we expect to happen there as far as testing goes?

 

[CindyM]

I am sorry to hear about your DH, Lori. Thanks for the coping tips. Be sure to let us know how his appointment goes, OK? Cindy

 

[awieleba]

your family are in my prayers.

 

[L4dybugg]

I have a few questions

Thanks April.


My Questions:

Does anyone know what other conditions, besides ALS that can cause a muscle biopsy to come back with: Chronic Denervation and reinnervation, as my hubby's did? And could someone explain to me in more detail what that really means.

Also, What does a dr have to see before they can say for sure that it is ALS?

Thanks Lori

 

[L4dybugg]

I am sorry to hear about your DH, Lori. Thanks for the coping tips. Be sure to let us know how his appointment goes, OK? Cindy

Ok I sure will, thanks Cindy ;-)

 

[L4dybugg]

Just need to vent some

Hello all, hope you all are doing well.

It is so hard the waiting, and wondering, what it could be. It hurts so much to see my hubby in so much pain. And all the things that are happening to him.

I can tell whatever he has, it is progressing alot faster than what it was. I can even see it on his face, he just looks so drained, and weak looking, you can see it in his eyes. He is just so tired. He is still going to work each day, and he comes home all he does is sleep, he is so worn out. So hard to see, just breakes my heart.

Today he had a very bad day, he was hurting so bad in his legs, more than he has been. Pain medicine is not helping much at all. He is in pain real bad every day, but today was worse.
He said he just could not hardly walk. His legs has given out before. And he does not know how much longer he will even be able to work. Also harder to use those hands and his arms.

He is not sleeping good at night, he hurts so bad, in his legs and arms. Some of the nights he is up all night long. One night I tried to barely rub his back, and that even was just too painful. I had to stop. I forgot to mention before, he also has severe sleep apnea. And is on a Cpap.



Hope everyone has a good night. Thanks for letting me vent.

 

[lovelily]

I am sorry, Lori...I wish I had the answers for you. I also have one muscle biopsy with and acute and chronic denervation, muscle atrophy and weakness. One showing myopathy. Doctors have no answers for me, either. Sometimes you just have to wait it out.

I will keep you both in my prayers during this anxious time!

 

[L4dybugg]

Thank you

Lovelily you have been so sweet to me here.

Yes we do, just have to wait it out. it can be so hard, and frustrating at the same time, so many emotions going on right now. Because you want so much to help your loved ones out, to make things better for them. And there is nothing to do to help them, to ease the pain, and all that is happening. But give my Love, support, ect. and help lift his spirits.

He seems to me like he is getting depressed, and angrey at times. He is getting very very quite. He is holding things in. I totally understand. He has so much on his mind right now.

Any tips on these emotions?

LoveLily what is your next step with what the drs are going to do for you?

 

[wright]

Hello Lori

Sorry I didn't reply to your thread earlier (I simply missed it).

Denervation occurs when the nerve supply to a muscle is lost. This can happen for any number of reasons: peripheral neuropathy due to trauma (e.g. compression of a nerve, crushing of a nerve, severing of a nerve), slipped discs, autoimmune diseases and syndromes that eat nerves, viruses that eat nerves, diseases such as ALS where the neurons die and as a consequence the nerves that those neurons form, degenerate. There are a number of other things that also cause denervation.

Reinnervation occurs as a consequence of denervation. What happens is that undamaged axons (axons are what make-up nerves . . . think of axons as the strings that make-up a rope and think of the rope as the nerve) innervate the denervated muscle cells. Reinnervation will not occur unless denervation occurs first. Therefore, if denervation occurs for any reason, reinnervation will occur in an attempt to maintain the nerve supply to those denervated muscles.

As far as your husband's muscle biopsy: I think I would need to know more of the details before I could really comment on it. There are different forms of denervation that can be seen on a muscle biopsy that are evident by the way the muscle fibers look.
Things you would want to look for in the muscle biopsy report that would tell me what kind of denervation is occuring with your husband are the following:

Scattered atrophy
Group atrophy
Fiber type grouping
The size of the muscle fibers
The shape of the muscle fibers
Where the nuclei are in the muscle fibers

At the end of the report, your neuro should have put what his/her impressions were of the test.

Many things can mimick ALS. The progression of his symptoms, the types of symptoms he has, such as lower motor signs (e.g. muscle weakness, muscle atrophy, fasics) and upper motor neuron signs (e.g. increased reflexes, clonus, Hoffman, Babinski, spasticity) are all important in determining what he has.

I hope that helps. Please keep us informed and ask questions if you have them. You are now on my radar, so I will read this thread as you post.

Take care.

 

[L4dybugg]

Thank you...

So much Wright for your time. And for the information, very much appreciated.

I'm so sorry that this report is not more clear. I know you read it before. I'm going to repost it, and type it word for word, maybe I overlooked something on it. And brake it up where it is more readable.

Here it is The Muscle Biopsy Report again:

Report is from: Rochester University Medical Center in New York

Specimen: Right Quadricep Muscle BX

Gross Description: Received is a 1.5 x 0.6 x 0.5 cm strip of red beefy muscle tissue within muscle clamp. The muscle is removed from the clamp and approximately 25% from one tip is submitted in formalin. The remainder is snap frozen and a slurry of alcohol and dry ice. It is forwarded to Rochester University Medical Center for further processing and interpretation. (GML) vlb

Gross Diagnosis:
Right quadriceps muscle, biopsy: (There is nothing written in here)
Just says report pending for Rochester university Medical Center.

Indications for Procedure/Clinical History:

Per Dr. Crawford, this 41 year old was evaluated for generalized muscle pain beginning about 2 yrs ago with progression. He currently has given away weakness and falls, difficulty chewing and swallowing. The famliy history includes a brother with similar symptoms and a cousin who died of ALS. On exam he has 5/5 strengthin his upper extremities and also lower extremities. MRI of the brain is normal. Emg on 7/31/08 revealed normal nerve conduction studies in the upper and lower extremities with no neuropathy. The EMG shows a mild increase in insertional activity.

Gross Description:

The specimen is received frozen and in formalin, labeled "right quadriceps, Andy", that is submitted en toto for histologic examination, including enzyme histochemistry. MDJ

Microscopic Description:

Frozen and formalin-fixed sections of skeletal muscle are stained with H & E. Frozen sections are stained with Gomori Trichrome, oil red O, PAS, SDH, ATPase (pH 9.4, 4.6, 4.2), NADH (DPNH), C)X and acid phosphatase.

These show preservation of fascicular architecture without perfascicular atrophy or increased connective tissue. There is mild variation in fiber sizes due to scattered atrophic, angular type I or II fibers.

The NADH reveals no target fibers. Internal nuclei are not increased. There is no no chronic or acute inflammation and the Gomori stain reveals no definite rimmed vacuoles.

SDH and cycochrome c oxidase reveal no definite ragged blue equivalents or negative fibers.

ATPase hisochemistry reveals collections of type I and type II fibers touching on all sides and more than 13 touching type II fibers.

PAS and ORO reveal evidence of excess storage product. Acid phosphatase activity is not increased.

Final Diagnosis:
Muscle, right quadriceps, biopsy:
Chronic denervation and reinnervation


This is all that is on the muscle biposy report.
The neurosurgeon said "this is not normal he as sick nerves."

And his regular neuro said, she was "surprised that his muscle biopsy came back like that", she said "it did not fit with his EMG" she in the beginning was leaning towards a muscular dystrophy but she said that biopsy, blew her theory. And now I believe she does thin it is als, but she did not say anything else of what it could be, she just kept saying how worried she was for him, with a VERY sad look on her face. and she told him to drink that protein shake to feed his muscles.

So now we are worried. Trying to keep the faith that it is not it.
Hubby told me yesterday, he just about broke down at work crying, because he just about can't work now. But he held it in. I know now it is beginning to press on him. He is worried I know, but not letting on he is, trying to stay strong.

I do have a question though, what does this mean?
PAS and ORO reveal evidence of excess storage product

Thanks