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Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
730
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
City
Small town
Hello. My husband, aged 68, was officially diagnosed with sporadic, limb onset ALS on Dec. 3rd/2015.

I have worked as a PTA (physical therapist's assistant) for 30 years, so unfortunately, as his symptoms evolved, I had my suspicions of what it could be. Looking back, his symptoms may have started during the Summer of 2014. He always had amazing stamina and energy (mowed 2 acres of hilly lawn with a power propelled, walk behind mower), but I noticed that he was taking more breaks and napping - something he had rarely ever done before. I attributed this to aging. Then last Winter, he hurt his back while stacking firewood and then later shoveling heavy snow for hours. He developed some right leg weakness and some minor weakness in the dorsi-flexion (pulling foot upward) of his right foot. He also had progression of back pain and first right quadriceps (thigh) pain and then left.

By the end of the Summer he was having trouble walking for more than about 200 yards without resting, due to leg pain. We had also noted that he was experiencing slow but steady weight loss and he felt "tired all the time". An MRI of his spine and a trip to two spine specialist was met with the opinion "we just don't see anything that would cause the pain you are having". He was also losing muscle mass (although I was in denial about this, because he was still pretty strong everywhere but the right ankle).

Fast forward to early September when I noticed fasciculations in his right forearm and right calf. After spending probably 100 hours researching on the internet and being hopeful it could be something (please, anything!) else, I was terrified. He was still very functional, still mowing the yard in segments, still quite strong, and did not have any upper motor neuron signs.

It took us several months to get in to see a neurologist. The neurologist said his fasciculations were not benign, because he felt my husband had weakness, and he noted the muscle loss. 9 days later my husband had an EMG; the neurologist himself performed the EMG. Afterwards we got the dreaded news. The doctor said the EMG findings were suggestive of ALS and that my husband had weakness up and down his entire right side.

The neurologist we have seen is a specialist in MND, trained at the Mayo Clinic, and the clinic we visited is an "ALS Center of Excellence". For this reason, we did not seek out a second opinion.

My husband has not had an MRI or a spinal tap. The neuro is a really nice man, very patient oriented (definitely has the disposition to be in the field he has chosen) and told us he is "open to anything". He has said he will schedule a spinal tap, just to dispel any doubts we may have.

Of interest is the fact that my husband was treated for Lyme's disease in June of this past year. For all intents and purposes we live in the woods, and both of us have pulled ticks off of ourselves from time to time. In June my husband had a noticeable bite mark/rash on his calf and developed severe, non-respiratory, flu-like symptoms with a very high fever. He was started on doxycycline x 28 days. He was given a blood test (Elisa), but the Physician's assistant said it would likely come back negative. The interesting thing here is that his leg pain went away, he gained muscle girth in his right quadriceps, and the minor drop foot on the right went away. It is not just wishful thinking on my part. I have spent 30 years watching, listening, and correcting patient's gait patterns, measuring muscle girth, etc. So, I was not imagining this.

My niece, who is pursuing her master's degree in nursing at Yale, is adamant that he be tested for Lyme's by a Lyme's literate physician. I mention Yale only because it is in Connecticut, which is the epicenter of Lyme's in the US, and a hot-bed for Lyme's research. I am aware of the controversy not only in the procedures/testing involved in Lyme's, but in the stories on-line regarding whether there could be a possible link between Lyme's and ALS.

So, my main questions after this long winded post are:

1). Are we crazy to even pursue an evaluation by a (highly regarded) Lyme's expert who is also an epidemiologist? I have read that neuroborrielosis can result in the death of lower motor neurons.

2). Can anyone tell me if you can take TUMS, etc. before of after taking Riluzole for stomach upset? We contacted the neuro nurse via e/mail twice and have not gotten an answer.

3). Are there any hints as to the speed of progression of this disease? I know that the progression / mortality is highly variable with ALS. However, I think that my husband's symptoms have progressed quite rapidly. Since early October, 2015 he has experienced loss of muscle mass pretty much globally (both arms, both legs, shoulders, etc.). No symptoms of slurred speech, or chewing, although he does occasionally choke on liquids (so do I for that matter).

4). Although the neurologist says that my husband is "hyper-reflexive" (UMN), a neurosurgeon that he saw one week before (for back pain) AND a pain specialist MD said that his reflexes are absent. I agree. I was there for all of the appointments, and I know how to test my patients for spasticity, increased tone, rigidity, etc. He has none of this. What should I make of this ......?

Thank you in advance for your input and for tolerating this long post. I was unable to even process all the questions and fears that I have had for the past two months.
 
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1). Are we crazy to even pursue an evaluation by a (highly regarded) Lyme's expert who is also an epidemiologist?
I would leap at the chance.

3). Are there any hints as to the speed of progression of this disease?
Just to confuse the matter, my wife's progression was a perfectly predictable straight line with one thing after another failing. Each month brought a new loss.
 
Highly regarded by whom? LLMDs are not generally highly regarded outside the Lyme community. However a highly regarded mainstream infectious disease specialist sounds like a great idea.
And it sounds like aside from that in spite of the credentials of your neuro you would be more comfortable with a second neuromuscular opinion which most of us get anyway
 
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Ps the issue with riluzole that they tell you no food is it is inactivated by fat. I don't think tums contains fat?
 
I would get a complete workup for Lyme, the brain MRI and the lumbar puncture. I would also get a second opinion from another ALS neurologist. There is a wide gap between hyperreflexia and an absence of reflex! Although, I have no reflex in my left ankle and my other reflexes are all hyper (but they have been most of my life.) Perhaps they were testing different reflexes.

I would want everything ruled out before I accepted the diagnosis.

Best wishes.
 
Buckhorn, sorry you find yourself here. Especially but not exclusively w/ people who have had systemic disorders recently, some reflexes can be hyper and some absent, and things can shift from exam to exam (even initial to repeated stimuli). Also, some are more art in the interp as you know.

It is fairly common for ALS to manifest initially with only LMN signs.

Agree w/ Nikki to stay away from LLMDs, a growth industry in the NE. If you care to post this person's name, since you cannot PM yet, I could check the journals in which s/he has published, and link abstracts.

I've posted before about ALS and Lyme (I've had one, my husband had the other). From the history you provide, I very much doubt they are being confused. But you should have a 2nd opinion on the ALS, no matter whose opinion was first.

Best,
Laurie
 
Thank you all for your responses. I am still trying to assimilate all that I have learned, and I think in some ways I am still in shock.

My heart goes out to all of you who find yourselves on this web-site and forum, whether from research due to fear of what may be happening to you, or if you are yourself a PAL or CAL, or someone who has lost a loved one or friend from this disease.

I want to tell you that in all truthfulness, I never went out of my way to become very informed about ALS. When I had my training over 30 years ago, ALS terrified me. All these years later, I have rarely met an ALS patient, and have remained terrified of the disease. In my professional capacity I have met and treated many patients with MS, Parkinson's, spinal cord injuries and various types of brain injury in an in-patient rehab. environment. The rehab. facility where I currently work has not had anyone admitted for ALS in the 4.5 years that I have worked there. I assume that this is because of the progressive nature of the disease and limited potential for improvement. I was shocked to learn that ALS is the most prevalent form of MND. I would have thought it was MS.

Thank you for taking the time to read my long (initial) post. I wrote so much detail because I have frequented the forum for a few months before I posted, and I saw that many members who responded ask the poster for more information. So, I tried to provide as complete of a picture as possible.

Can anyone tell me if ALS diagnosis is on the rise? I surmise from my reading that it is.

TY.
 
The confusion is that MS is an "autoimmune disease" -- or more precisely, a demyelinating, immune-mediated sensory and motor neuropathy, not a pure motor neuron disease as ALS is. ALS is and was the most common MND.

The incidence has remained fairly stable, though MS data is easier to come by because, since there are effective long-term rx treatments, pts return more consistently to neurologists.
 
Sorry to welcome you here. The shock is horrendous in the early months. It does ease but never quite goes away either.

Probably you didn't see a PALS in you work as a PT because dying muscles cannot be rebuilt.

Massage, light exercise to keep movement and blood flow, and ROM active or passive are wonderful therapies.

Preventing falls is so important - injuries may never heal, and too many PALS die from head injuries. My husband sustained injuries that left him with a lot of pain the rest of his days (ruptured shoulder tendon).

I'm not sure about the US but at the moment in Australia the rate is 2 diagnosed every day and 2 dying from every day, so our numbers remain around the same.

Trach and vent are not options in Australia so possibly our length of life after diagnosis are shorter.
 
Hi Buckhorn, I sincerely hope you arent here to stay. We had 3 opinions for my husband before we truly started to accept it. You need to get as many opinoons as you need to feel comfortable. Or get everything explained so you are comfortable with it. I believed the first neuro because everything fit. Steve, my pals, didnt believe until the third opinion.

My understanding of Lyme, and it is limited, is ultimately it acts as an autoimmune disease. That is a very different disease course from ALS.

Dont beat yourself up not knowing about als professionally. Most healthcare providers dont. It is why we, as the cals, educate doctors,nurses, and allied health professionals.
 
Steph, I'm sure you meant that Lyme is an infectious bacterial disease rather than auto-immune like MS.

In the States, BT, not sure about elsewhere, bodywork is reimbursable for ALS generally when (1) it's a clinic consult, like on wheelchair specs (2) it's provided by a home health agency, to preserve range of motion/reduce pain/get a self/CALS-driven regimen in place in early disease or (3) it's palliative therapy provided by hospice. So since you don't work in those settings, you wouldn't likely see ALS too often. But as a PTA, you will be awesome in performing your husband's passive ROM exercises, massage and stretches, and that will benefit him immensely.

Best,
Laurie
 
Yes laurie I did mean infectious bacterial disease. Ibviously the mind wasnt well focused:)
 
Thanks Laurie. I am fairly confident that I will be physically competent in performing the manual therapy that you mention to my husband. I am much less confident of holding it together emotionally. I am also very familiar with adaptive devices and have become quite proficient at assisting patients with transfers from one surface to another. These are things I have done multiple times per day for years. I am also very, very fortunate that I am connected with a great group of professionals, who have already offered their help. I know I am going to need it down the road.....

On another note, perhaps Steph meant that Lyme Disease can, in some cases, cause an auto-immune response: Lyme and Tick-Borne Diseases Research Center

I have spent dozens of hours researching Lyme's disease. I believe that you have done the same Laurie, as I see you are well educated in the topic. I believe that you mention somewhere that you were treated for Lyme's disease? I proceed with the following, not for your education, but for the interest of others. <mod note: in accordance w/ our guidelines, [BT, see stickies] this post has been edited for brevity, DIHALS content and commercial links>

I know the CDC reports a "Post-treatment Lyme Disease Syndrome" (PTLDS - Post-Treatment Lyme Disease Syndrome | Lyme Disease | CDC).

In my initial post, I mention having my husband visit a leading Lyme's research physician. (Laurie, you had asked who he was. He is Dr. Daniel Cameron). I also noticed that Johns Hopkins University Medical Center opened a research center for Lyme in May/2015.

I have hesitated in pursuing an evaluation by a Lyme's specialist because I believe the course of my husband's symptomology do fit the differential for ALS. However, his exposure to and removal of ticks on his body over the years, as well as treatment for Lyme make me feel I should not ignore the possibility. I am not well educated enough at this point to understand how and if neuroborreliosis can indeed cause demyelination and LMN damage. I do understand that this is controversial. At this point I feel that if we don't "go down the rabbit hole", I will forever question whether I did everything possible to advocate for my very dear husband.
 
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BT,

We don't support dueling disease theories here to the extent that commercial interests are prominent. Also, since there is the potential for abuse, we somewhat restrict posts about being in the diagnostic process to that process, and once someone is diagnosed, things move into a somewhat different category. Your post is somewhere in between so I pruned it somewhat for the benefit of our many members for whom reading/scrolling is difficult.

There are other threads here with informational links to the cruel deception of "ALS that is really Lyme" that some practitioners have perpetuated and profited thereby. Since ALS is a terrible, expensive disease, we do err here on the side of protecting our readers from the harm that a natural desire for hope can spawn, including stem cell fraud, dubious machines, miracle herbs and the Lyme deception. I am not going to litigate ILADS vs. ISDA here except to say that research into the antecedents of each is revealing.

You began by questioning the wisdom of a second opinion, but your view seems to have evolved. I will only repeat my/our advice to seek a second opinion from a neuromuscular specialist who can be objective about all the available evidence and does not profit whatever the outcome. I'm also closing this thread so we don't get too far "down the rabbit hole" here on the ALS Forums. Please start a new one when you have more information about your own [husband's] diagnosis to share.

Best,
Laurie
 
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