Not sure if it's ALS ..very baffled

[finiteguy]

Hi, I am new to this group. My wife has some sort of neurological problem. She can no longer walk and she is in a wheel chair. The doctors haven’t completed a diagnosis….the EMG she had was abnormal, and her back and spine MRI showed some stenosis. The neuromuscular doctor seem anxious to label it ALS…and I don’t buy it. He wants to repeat the EMG and my wife won’t have it…it is too painful for her to tolerate it.

I’m a baffled. She has symptoms that could be multifocal motor neuron disease, because her problems are not symmetric. Her left hand is all bent from atrophy but right hand is fine. Both lower limbs are very week and she can no walk….but she can stand and bear weight to get up on be placed on the commode. She has been taking anti psychotic meds for 17 years for a mental illness and I wouldn’t be surprised I that contributed to this.

She has NO breathing and swallowing issues…no voice change …no muscle twitching. She has bladder retention issues where it takes her a long time to urinate….but is not incontinent.
I took her to Mass General in Boston…and the doctor was a total ass…..he put her in a room with a big ALS sign on the door, examined her and said “I’m sorry that I can’t give you a diagnosis of ALS today…we want you to do another EMG.

My wife was horrified, because up until that point, she had NO idea that they were considering ALS. My wife has had balance and tripping issues for as long as we have been married….38 years. I would think that if it was ALS, it would have progressed faster years ago. She also has bruising on her legs that are unexplained….she hasn’t banged into anything. I do know that a symptom of MS is the bladdler retention issue.

Also, last year my wife took many falls on her back and banged her head. I asked the doctors to do and MRI to see if there was damage from the falls and it goes on deaf ears. One of the neuromuscular doctors asked my wife what she thinks she has….and my wife says she doesn’t know…and he says he doesn’t know either.

Needless to say….I’m totally disgusted with these doctors. She was also tested for Lymes and that was negative. Any suggestions would be greatly appreciated. I am my wife’s care giver and I’m 67 years old. There will be NO nursing home for my wife if needed…I hire people to come to my house to help.

 

[ShiftKicker]

Mod note- Moved from ALS/FTD section.

It sounds like your wife has a very complicated health history. I can imagine your frustration in trying to get assistance and answers.

What is the next step for you? Have your received any sort of official diagnosis? Have the doctors who have seen your wife indicated what further testing is required?

 

[lgelb]

Hi, FG, no group can be perfect even at MGH, but I'm surprised to hear an MRI wouldn't be part of the ruleout with her history, especially. What other tests/labs has she had done?

Why not seek a second opinion? You're in a prime city for academic med centers.

I agree that ALS isn't a 38y progression but gather your wife is only recently in need of a wheelchair? She could have various other comorbidities and still have something new that is progressing more rapidly.

If you could post the EMG report, perhaps we could be more helpful. Usually a provisional ALS dx would not be mentioned without strong support.

Best,
Laurie

 

[finiteguy]

Mod note- Moved from ALS/FTD section.

It sounds like your wife has a very complicated health history. I can imagine your frustration in trying to get assistance and answers.

What is the next step for you? Have your received any sort of official diagnosis? Have the doctors who have seen your wife indicated what further testing is required?

The only other test that the doctor is willing to do....(and this doctor is at Lahey Clinic) is a repeat of the EMG. My wife can not tolerate this test, in fact she could not complete the first test. The nerve conduction part was complete but the needle test was not. The doctor seemed like he didn't know what he was doing....he wrote on the report that it was probably diffuse disorder of anterior horn cells. I do know that they are trying to start an ALS clinic at Lahey..so maybe his opinion is biased. The doctor was an absolute ass.....just as the one at MGH. There is no official diagnosis....but I do know this....if the doctors tell my wife she definitely has ALS...that news will kill her within a matter of weeks. She is emotionally compromised because she is also mentally ill.

 

[Nikki J]

It sounds like the next step in the minds of the neurologists is an EMG and she has not been able to have a complete one. I get that she has issues so it is not as simple as telling her to grit her teeth and do it.

It sounds like your feeling is if it is ALS you don't want to know but you want to rule out other things hence your wish for a brain MRI? Have you asked her pcp or her psychiatrist if she has one to order one? Any MD, DO, NP or PA can order one if they feel as if it is indicated.

If I have misunderstood and you do want to get an answer to the ALS question I think it will be hard without the EMG part because that is a big piece of the diagnostic workup which is probably why you got that unsympathetic comment at MGH

 

[finiteguy]

It sounds like the next step in the minds of the neurologists is an EMG and she has not been able to have a complete one. I get that she has issues so it is not as simple as telling her to grit her teeth and do it.

It sounds like your feeling is if it is ALS you don't want to know but you want to rule out other things hence your wish for a brain MRI? Have you asked her pcp or her psychiatrist if she has one to order one? Any MD, DO, NP or PA can order one if they feel as if it is indicated.

If I have misunderstood and you do want to get an answer to the ALS question I think it will be hard without the EMG part because that is a big piece of the diagnostic workup which is probably why you got that unsympathetic comment at MGH

She had an abnormal EMG 25 years ago but they have no record of it. Every organ that is affected has had surgery right tibial plateau fracture 22 years ago...repaired with hardware....left foot bunion surgery with hardware....left elbow 17 years ago....repaired with more hardware. She has venus statias in her lower limbs. 6 years ago she started walking with a cane, and a year ago started with the walker. Now she is in a wheel chair. She has perfect vitals.....excellent blood pressure, 98% Oxygen and no heart issues. As I said before NO fascillations and no breathing or swallowing problems. I was thinking that maybe the hardware is breaking down and causing issues but the doctors poo poo'd the notion. Many health care workers...nurses, PT and OT and also the person who made braces for her legs....have come into my home and they all say that it doesn't look like any ALS that they have seen. I find that the nuero doctors are very narrow minded and won't think out of the box. I asked the MGH doctor is he thought that her taking risperdone for 18 years could do this. His response was "I don't know but I don't like those drugs" Risperdone is a dopamine antagonist that can mess with motor neurons....from what I have read. Anyway.....totally disgusted with medical people.

 

[finiteguy]

Does ALS cause bladder retention and difficulty urinating.

Can someone tell me if bladder retention and difficulty urinating are ALS symptoms? My wife has this problem and the doctors also suspect ALS....just wondering if it's a symptom. I've read that its a symptom of MS.

 

[friedgold1]

Re: Does ALS cause bladder retention and difficulty urinating.

Urinary retention can be a symptom of ALS and is most likely due to spasticity in the muscles of the pelvic floor. That being said, if urinary retention is the only symptom your wife is dealing with, there's a laundry list of other causes that are much more likely.

 

[ShiftKicker]

Mod note- I have merged threads to make sure all info is in one place while you search for answers about your wife's condition.

 

[finiteguy]

Can someone help me here? I see no way that I can post a new post other than tag onto what I have already posted. I wanted to talk a bit about what's happening to my wife. Over the past year she has had 2 bad falls that sent her to the hospital and then rehab ..and both times she came home in worse shape than before the falls....I wanted the doctors do to MRI's after the falls...but they wouldn't listen...,they just want to give her another EMG...I think they are trying to cover their butt because the Lahey doctor who performed the EMG appeared to not know what he was doing...and couldn't complete the test....also, she had a brain MRI 2 years ago that showed brain anomaly, atrophy and the report indicated that she may have had encephalitis many years ago. The doctors refuse to comment on that. I'm thinking about bringing her to Tufts Medical in Boston as a 3rd opinion.....I was very dissatisfied with the MGH staff...and Lahey clinic. Also, she is now having lots of pain in her left ankle and right knee. The pain is usually at night while in bed. Very unsymmetric symptoms her left hand is all bent in (claw like) but her right hand although not very strong seems to be okay. She still suffers from bladder retention and her doctors will not prescribe anything to help that...in fact they ignore her. ...I have read that the nonsymmetric symptoms could indicate multifocal motor neuron disease....which is treatable.

 

[ShiftKicker]

Your best bet is to continue to seek answers from specialists. If you are not satisfied with the answers you are receiving from the current clinic, you may have to move on to another clinic, as you say. However, the fastest way to diagnose/rule out ALS is to get an emg. While I understand it's traumatic and painful, not allowing for an emg is essentially limiting what a specialist can do for your wife. It is an absolutely fundamental tool for detecting so many different conditions.

Your posts with regards to the specialist care your wife has received so far, and the interactions you've had with varied specialists come across as distrustful and combative- there appears to be an issue where your wife is not able to get proper care and diagnosis as a result. If there's a clinic or doctor you feel you can trust and respect, it might be best to go there so your wife can get the care and medical attention she needs.

 

[finiteguy]

So you are saying that the EMG is the only test that my wife should have? As I mentioned before...she fell 2 times and one time banged her head on a cast iron radiator ,,,,went the hospital and came home with a bent foot (inward). Her initial EMG was abnormal....a year ago and she had one 20 years ago that was abnormal. I think that the doctors should be looking at other things....they have done virtually nothing but insist on another painful EMG...and I'm not sure she can even do that....When they do the EMG, the patient has to lie on a table and flex put pressure on their legs to flex the muscles. My wife is unable to do this. These doctors simply want to call it ALS and call it a day. If it is ALS...there is NO treatment....so why bother. I'm totally disgusted with doctors....they say the we have the best doctors in Boston..and that is simply a crock in my opinion. Thanks for your advice and help here.

 

[Atsugi]

FiniteGuy, from reading your posts, I suspect that your feelings of distrusting doctors is coming across loud and clear to them. The doctor's job is to provide their expertise. They are not responsible for persuading you or your wife to believe them or to do anything.

The doctors are putting their licenses on the line when they diagnose someone, and they want it to be solid, so they want the EMG. It seems that, without a proper EMG, you may miss out on thousands of dollars that you will need.

As Shiftkicker said above, you might need to find a new doctor or a new neurologist.

Now, here is a different discussion: IF it is ALS, the treatment is...treat symptoms to make the patient comfortable. This, frankly, is what I would do for myself no matter if I had a disease or not. There is no cure, so you just wake up each morning and see what she can and cannot do, and then spend the rest of the day making her as pain-free, fear-free, and as comfortable as possible. If you're lucky, you might have the opportunity to help her be happy for the day. It doesn't sound like much, but I'm telling you from experience: my own wife died from ALS. I can assure you that her last weeks and her passing were pain-free, fear-free, comfortable, and with dignity. She slipped away quietly in our home, surrounded by her children and her sisters.

On the other hand, IF it is not ALS, it may be curable and the EMG would be a temporary pain rewarded with long-term wellness.

Wish I could do more. Good luck.