My husband is being tested....

[tag0620]

Hi,
My name is Tracy, we're in Utah, and my 47 y/o husband is being tested for als.

His story...
Had a ski accident Dec '06...walked (skied) away and skied the rest of the season. In Feb '07 while training for a 1/2 marathon..had a foot drop start on his left side. Started testing blood for MS or similar. Tests came back negative.

Weakness kept progressing, so they decided to try cortisone shots in his back. Did this twice..nothing.

Sent to an orthapedic surgeon, did an MRI, found a HUGE stenosis in his spinal cord between l5 and s1. Went in for surgery (fusion) and found that vertibre was broken. We fixed it, fusion is strong, and he was walking up stairs within 2 weeks after surgery unassisted.

After this point...he started getting weaker, has lost almost all muscle in his quads and calves, has become very stiff, and is rapidly losing his ability to walk. He had another MRI done showing no problem with his fusion. He has a mild herniated disk touching the cord, but doesn't seem to be a problem. They did an emg that showed abnormalities in both legs..but up his back came back normal.

Went to a neuro science specialist at the U who wants to do another emg of pecs, arms, and shoulders in starting to test for als.

In the meantime...went to our family physician to run more blood tests. They came back showing positive for antibodies associated with Rocky Mountain Spotted Fever. The Neurologist thinks (just over the phone) that it's probably a false positive...but family Dr took more blood and is retesting it.

My questions are...could Rocky Mountain Spotted Fever mimic symtoms of als like lyme disease can (he has extreme atrophy (of legs only), twiching (constant in legs only if not at rest), weakness, rather brisk (but not extreme) reflexes, near paralysis (of legs only)...and is it common to get a false positive on something like this? I thought it was MORE common to get false negatives.

Any advice would be greatly appreciated. We're now members of this very scary club!

THANK YOU!

Tracy

 

[tag0620]

Oops...

Needed to add that his back fusion was in April '08...these new problems started around May of this year.

 

[jennibf]

Tracy,
While I don't know the answer to your question, I wanted to post and tell you how sorry I am that you and your husband are going through this.
jennifer

 

[laurel]

Hi Tracy,
I'm sorry to read about what is happening to your husband. My husband has an autoimmune condition called CIDP. In the clinic where he gets monthly treatment of IVIG, we met a young fellow with Polymyositis--not sure if it was straight Polymyositis or Inclusion-Body Myositis. His symptoms were similar to what you describe with your husband. Let's hope it is something like that and not ALS. I'll keep my fingers crossed that it is something treatable like Polymyositis.
Laurel

 

[tag0620]

Thank you!

Thank you Jennifer..your kindness means so much!

Thank you laurel! He fits the inclusion body more than the poly...but he still hasn't shown any impact on his upper body.

This is a double edged sword where there are so many conditions that "could" fit that it's overwhelming...but on that same note, it gives a bit of hope that it could be something that we can live (a long life) with.

 

[awieleba]

Hi tag

My grandma has severe spinal stenosis in her spine that presented with drop foot. she got PT and hot massege and that got her walking again.

on a nother note, my aunt had back surgery with pins put in and she had alot os atrophy and weakness fron the prosedure.

hang in there ans hope for the best, he has alot of back and spuinal issue's.
my fil was in a wheel chair with spinal stenosis and is doing great. he saw his neuro suergen who said it is a miricle with his level os stenosis that he is walking and with out pain.

april

 

[tag0620]

Thank you April!

That's the hope that we're hanging on to. The odds....

His ex-brother-in-law just passed away from als last year. What are the odds that he now has it.

This all is happinging in conjunction/timing with SEVERE back injury and fusion surgery.

He walked around with a broken back for a year and a half, not knowing it was broken...we're hoping that that fact in itself could have caused enough nerve damage/muscle atrophy to explain what's happening now...that by the time he received his surgery his muscles/nerves were at a point of near-no-return.

I know we have to go through the testing to make sure it's nothing worse...but it's irritating that the "worst case" is thrown out there. They've looked us right in the face and said without much extensive testing that they don't think it's because of his injury/surgery...it appears to be a NMD.

Isn't it possible that through that year and half where the drop foot started and atrophy started getting bad...and then during recovery when he couldn't work out...that he lost enough for it to not come back without use of steroid treatment or possibly ever? Wouldn't the extreme loss of muscle itself cause the twitching/firing of the nerves. Wouldn't the severe stenosis in the spinal cord cause irregular growth or death of nerve endings in the lower body?

This has been over two years of lower body trouble only. So far there have been no decreases in strength in his upper body, no twitches, no atrophy up top, no problems with speech or swallowing, no bladder/bowel/sexual ( :-D ) function trouble.

Does this sound like we're grasping at straws or would this be possible?

I do know one thing...in seeing Fred's passing...in experiencing this fear...we're going to add this dreaded disease into our "giving" list!

On our "good" note...we're getting my husband onto a "sit ski" this year...he will be up on that mountain doing something he loves even if it's not the way he's been able to do it throughout the rest of his life. We also were going to cancel a trip to Maui this winter due to finances..but we're going now..we want that vacation with the kids..just have to figure out how to get him through the sand on the beach! We living life despite the fear!

Thanks again!

 

[BethU]

Hi, Tracy ... it is very possible that this is not ALS. There are dozens of other conditions that mimic ALS, and considering the trauma and surgery he's been through, I would think that would be the obvious place for them to start evaluating him.

I'm so glad you are going ahead with your vacation plans. That is the best thing any of us can do ... live life to the fullest till they come up with answers ... and AFTER they come up with answers, too.

Good luck with the tests.

 

[tag0620]

Thank you Beth!

We have our emg of arms, chest, shoulders tomorrow and obviously hoping it comes back clean.....

I did find these blurbs on the mayo clinic site about stenosis...so even though he fits a profile to start looking at als...he still fits (especially with the timing of everything) a profile that this could be from his injury/surgery.

"Degenerative changes. Although treatment can relieve symptoms of spinal stenosis, it doesn't stop degenerative changes. Some of these changes, such as muscle atrophy, may be permanent, even after the pressure is relieved."

"Back surgery can relieve pressure in your spine, but it's not a cure-all spinal stenosis treatment. You may have considerable pain immediately after the operation, and you might continue to have pain for a period of time. For some people, recovery can take weeks or months and may require long-term physical therapy. What's more, surgery won't stop the degenerative process, and symptoms may return — sometimes within just a few years. "

Since the Dr. looked at us and said that he doesn't think that this is related to his surgery...I'm trying to figure out why...based on the history. We're not sure that he really understood the history of the accident and the "progression" of what's going on...so...I have another question that I can't find an answer to on my own.

Is there a "normal" correlation with the types of nerve problems that show up with als vs other problems? i.e. my husband still has fully functioning sensory nerves (even in his legs and feet) where he can feel hot/cold/vibrations/pressure etc....it's motor nerves only...and in his legs only.

Does als cause sensory nerve damage as well?...or...would an injury cause both motor and sensory?

I hope these questions make sense.

Thanks again everyone...I feel like I'm back in college with the amount of research I'm doing on a daily basis just trying to educate myself!

Tracy

 

[tag0620]

One more question...

...on top of the question on sensory nerves...

Is there anything that they can discern from a urine test? Anything indicitive of advancing als?

No one has even checked his urine yet...and I thought I read somewhere (but can't find it again) that there were some compounds/proteins/etc that would be heightened in a urine test that would be indicitive.

Should this be a basic test or does it not really matter?

 

[BethU]

Tracy, I get regular urine tests in a clinical trial I'm participating in, but have never had them in any regular clinic visit for ALS (or anything else neuro). I don't think they are part of a diagnosis.

 

[tag0620]

ok...thank you on that one...

Just trying to figure out steps...it feels like the specialists are looking for worst case scenarios without having looked at regular beginning tests which is curious to me. We even had to bring our regular MD in after they started looking for als because no one had even run basic blood tests before throwing this out on the table...AARRGGHH!

Any input on sensory nerve damage as part on a diagnosis?

 

[wright]

Hello Tracy

This is quite a thread with lots of questions and I'll do my best to answer them all. If I overlook something, please let me know.

Rocky Mountain Spotted Fever causing neurological symptoms that your husband is experiencing is something I am not aware of. It is a tick-borne disease like Lyme disease but the bacterium is different than the Lyme bacterium.

If the stenosis is as severe as you indicate, it is most likely compressing the spinal cord and impinging on nerve roots.

The compression of the spinal cord will cause painless weakness and possibly coordination problems along with some stiffness and might even present with increased reflexes and bowel and bladder problems.

The spinal nerve roots are made-up of nerves originating from the anterior side of the spinal cord (which is responsible for motor functions) and the posterior side of the spinal cord (which is responsible for sensory functions). Therefore, these nerves from the anterior and posterior areas of the spinal cord join together to form the spinal nerve roots. It sort of looks like a sling shot: the handle of the sling shot is the spinal nerve root and where the sling shot splits are the two sets of nerves originating from the anterior and posterior areas of the spinal cord.

It is possible that just the anterior nerves can be impinged and would present solely with lower motor neuron symptoms: weakness and/or muscle twitches and/or muscle atophy.

It is also possible that just the posterior nerves can be impinged and would present solely with sensory symptoms: pain, numbness, pins, needles, etc.

If the actual spinal nerve root is impinged, then both sets of symptoms would be seen.

When it comes to the results of his EMG: I can't really comment on them and can't tell you why his neuro came-up with that conclusion unless I see the actual results. Your husband's back problems can certainly explain his symptoms but I don't know if they can explain the EMG results . . . because once again . . . I don't know what the results of the EMG are.

Having said that

If your husband just had compression of his spinal cord WITHOUT any impingement of his nerve roots, then his EMG would be clean.

If your husband had compression of his spinal cord AND impingement of solely the anterior nerves from the spinal cord, the EMG would show motor nerve abnormalities and would look very much like the EMG of someone with ALS.

If your husband had compression of his spinal cord AND impingement of the entire spinal nerve root, then he would have both motor nerve and sensory abnormalities in his EMG. The sensory abnormalities would be indicated by the nerve conduction portion of the EMG. These EMG results would look different than the EMG of someone with ALS.

What is going to shed some light as to whether his leg problems are due to his spinal issues or something else, is going to be the EMG of his upper body.

Answer to your last question

No, nothing in a urinalysis would be indicative of ALS. That would be used in conjuction with other tests to rule out other diseases.

 

[tag0620]

THANK YOU Wright!

This one quote from your response is what will carry me through to this emg tomorrow with hope...and for just that bit of time...I'm grateful!

"If your husband had compression of his spinal cord AND impingement of solely the anterior nerves from the spinal cord, the EMG would show motor nerve abnormalities and would look very much like the EMG of someone with ALS"

The emg of the legs was abnormal, but all the way up his spine and back was clean. I know tomorrow with the emg of arms/chest/shoulders will be very telling and it has been the what if's taking us both over with stress.

He is very classic with als symptoms....BUT....he also fits perfectly with spinal cord injury which was VERY SEVERE for a year and a half before his surgery...which is where our hope lies.

Thank you all so much for your answers to some frantic questions! It's very appreciated.

I'll let you know if we find anything out tomorrow!

 

[tag0620]

I'm numb, and sick, and angry....

My husband was diagnosed with limb onset als today.

But someone please tell me how feasable it is that we saw this specialist last week for an hour for the first time...he banged on reflexes and pushed and pulled on limbs and fingers...and we saw him for 45 minutes for an upper body emg today...and he diagnoses als. Under two hours to diagnose this...how does that work.

He looked right at us and said we can go get a second opinion (WHICH WE OF COURSE ARE), but he doesn't beleive in giving false hope through other extensive testing when he feels certain.

He's never had a brain mri, he's never had a muscle biopsy, he's never had a spinal tap....yet he's told he's dying...how does this work? (he's had an mri of the spine, a ct scan of the spine, a lower body emg, and now an upper body emg) BTW..this Dr. is THE als specialist at UofUtah....just handed us an rx for Rilutek and we're on our way to get our affairs in order.

Now..he did come back showing positive a 2nd time for Rocky Mountain Spotted Fever...with an even higher antibody count...and they started him on treatment for that. Am I holding out false hope that his lower body symptoms are from his injury/surgery and that the upper body might be from progressed RMSF attacking the nervous system?

We've only been married for 5 years and have a 20 y/o daughter, a 17 1/2 y/o son, and a 12 y/o daughter between us.