Possible ALS?

[AJ1985]

I had already been chronically ill for a decade+ with a whole host of strange and largely unexplained symptoms.Consistent vertigo/dizziness,migraines,nausea,and odd sensations throughout my body--were the main issues.I'd seen various specialists,had many blood tests,CT scans and MRIs which brought up nothing significant.

In the last three months Ive had progressive weakness in the left side of my body. My range of motion isn't too bad but even a glass of water feels much heavier to hold than it should.I When I walk it is like I am carrying twice my weight. I seem to seize up often.Sort of like a full body cramp with a strange hit in the funny bone type sensation.This is often followed with my left leg momentarily dropping me and me falling down.I fear that some smaller muscles have died out but larger ones are compensating for now. I also tend to fall if I am squatting down to do something.

I saw a neurologist about this 3 weeks ago who did an in office exam and told me he does not think it is ALS.

He did a neck MRI and blood tests for rarer conditions -that came up with nothing.I am waiting on a spinal tap and cannot get an EMG for another 4 months.No one has yet been willing to send me to the local ALS centre.I am waiting on pulmonary testing next week.

Two doctors have claimed I have somatoform disorder and another thinks it is ME/CFS.

I have been going mad with terror.I tried to commit suicide in fear of having to die from ALS.I am now on antidepressants and antipsychotics that are not helping very much.

I don't know how to bear the time until the EMG and nothing seems to reassure me.I don't know who or where to turn to.

Other relevant symptoms:

Shortness of breath even at rest-- disrupts my sleep

Hoarseness and trouble raising voice

Swallowing trouble and incensed drooling (history of dismotility)

Shaking/tremor

Fasciculations

Two "slow" fingers on left hand usually after waking (sign of spasticity?) and a hand "clawing" sensation

Emotional lability (could be anxiety?)


I don't know of many diseases that mimic ALS but don't eventually become it.

I don't think I am being unreasonable in thinking I have (perhaps an atypical form of) ALS but everyone around acts like I am.

I am 31 and female.

If anyone has any advice for how I should proceed it would be much appreciated.

 

[ShiftKicker]

Hi there-

Sounds like you have a whole host of health issues. And those issues can be caused by so many things. You say you don't know of any diseases that mimic ALS- but there are a few. However, your symptoms are not immediately indicative of ALS, so your doctors should be looking further into the root causes- which it sounds like they are.

You have a couple of options.

One- keep working with your gp/specialists to track down a cause and continue to get pushback if you insist it's ALS

Two- see a psychiatrist for care and support and also keep working with your docs to track down a cause of your physical symptoms.

I can not recommend seeing a psychiatrist enough. Especially one who specializes in somatoform disorders. Not because I'm dismissing your physical symptoms, but because a psychiatrist who specializes in such disorders can help you sort out if your symptoms are influenced or worsened by brain chemistry, or if they are straight up physical issues. They are MDs with a specialty in psychiatry and are also able to support you as you search for answers. I did this, by the way, and have NEVER regretted it. The fact you attempted to commit suicide indicates an extreme need for mental health support.

This is in no way dismissive of your physical symptoms, but you need to make sure you have adequate support for all your symptoms, not just the physical. Feel free to go back through my posts to read how much a psychiatrist helped me as I was going through the diagnostic process.

Best wishes

 

[AJ1985]

My current psychologist/counsellor of two+ years has told me that my condition goes beyond her skill set

I have seen mental health professionals,often for years at a time and tried quite a few psych medications. I am set for a follow up at the end of April with a neuro-psych who originally said I had a somatoform disorder.

I want to be out participating in life in case the worst is true but I am so impaired that trying to participate becomes traumatic.It is hard to enjoy being outside when you're constantly losing your balance or falling down.

I am considering having myself checked into a mental health ward but it is difficult to imagine that will help after so many other psychs haven't.

Thank you so much for your prompt and honest reply.

 

[ShiftKicker]

I bet your counsellor would be able to provide information on someone they think would be helpful if they feel your condition is out of their skill set.

While it must be frustrating to be confronted with what feels like doctors dismissing your physical issues, it can be important to explore just to make sure. As I say, I followed this route of inquiry and HEARTILY wished it was what was wrong with me. Somatoform disorders are not malingering, or hysterics, or a personality deficiency of some sort, nor any of the pejoratives one might think when connecting physical symptoms to a state of mental health. A good comparison is that somatoform/psychosomatic disorders are a software problem in the brain. Somatoform disorders are involuntary, and are in no way something a person can deliberately cause. It's a programming error. It can be absolutely life limiting.

While you wait for your emg, which will indicate if there are any issues between brain and muscles, I recommend trying to find someone else (again, a psychiatrist) who can help support you and find some ways of dealing with the day to day issues that are arising due to your physical limitations. It's covered under BC Med and you are entitled to 2 visits a week. You just need the referral from your gp for it to be covered. If you feel you are going to harm yourself, please do check yourself in to receive the support you need.

 

[AJ1985]

Thank you SO much for your replies.

I ended up spending a week in a mental health ward and have a follow up with a somatization specialist pending.

Last week a doctor gave me NCS on both my hands and one of my legs. He said he diagnoses about 35% of the ALS in my area and that he didn't think I have ALS and did not think an EMG IS necessary as the NCS was clear.

For a few weeks I'd been waiting to hear back about pulmonary function tests I'd done.For some reason the respirologist didn't send a report back to the referring doctor along with my results.The walk in doctor only said some evidence of pulmonary obstruction had been found.Possibly asthma.She also sent out a referral for sleep apnea testing.

I am now concerned that I should have pushed for an EMG esp. In the lung/throat area.

I have no idea if I am being unreasonable in thinking mine might be a respiratory\bulbar case. The doctor did not run the NCS in the lung/throat area.

I am supposed to follow up with a neurologist in a few weeks but I am constantly uncomfortable and terrified. I will of course call the respiratory clinic tomorrow and see if they can clarify anything but at this point I am considering paying for a private EMG.

I keep trying to remember that the doctor who did my NCS is a specialist in ALS but I am also afraid that I have only a few months to live.

Any insight will be appreciated. Thank you again.

 

[Atsugi]

"I am now concerned that I should have pushed for an EMG ... I am considering paying for a private EMG. ... I am also afraid that I have only a few months to live."

You are second-guessing a medical doctor. That's kind of silly, don't you think?

Just for a moment, let's answer this question: If, in fact, you had "only a few months" to live, what would you do and how would you live your life?

 

[AJ1985]

People in the late stages of this disease are still managing to help others and to "get something" out of life while I am failing to even get through my waking hours.I don't understand why I cant internalize this attitude and move forth.

I think in my last months it would be important for me to spend time with friends. I am finding it almost impossible to participate due to incredible restlessness,cramping and breathing issues that disrupt my sleep.

I read about PALS on the boards who had a strange symptom

A sharp involuntary intake/exhale of air (as if the body were compensating for forgetting to breathe)

along with pain and tightness around the ribs

before their limbs really began to fail or they were finally diagnosed with the disease.

I am having these symptoms now and because of them I am convinced that I have bulbar or respiratory onset ALS.

For some reason it is harder for me to believe that I have late onset asthma than ALS.Even to me this seems logically unreasonable but my "gut instinct" wont listen.

I tried to get a follow up with a pulmonologist but the ordering doctor thinks I should get a home sleep apnea test before bring sent .I am worried that I actually need a sleep study to rule out central sleep apnea (which I gather to be indicative of ALS?) or an EMG of the muscles involving breathing.

I have neuropsychological and neurological follow ups within two weeks but I am genuinely afraid I won't make it until then and I don't know what to do/if that is an unreasonable fear.

Please accept my apologies in advance if my posts are disrespectful. This can be my final post if I am taking time/space away from those who have actually been diagnosed.

 

[Atsugi]

I don't see any reason to think you have ALS, but I agree that a psychiatrist (not a psychologist) would be a good idea.

 

[AJ1985]

Hi there-

Sounds like you have a whole host of health issues. And those issues can be caused by so many things. You say you don't know of any diseases that mimic ALS- but there are a few. However, your symptoms are not immediately indicative of ALS, so your doctors should be looking further into the root causes- which it sounds like they are.

You have a couple of options.

One- keep working with your gp/specialists to track down a cause and continue to get pushback if you insist it's ALS

Two- see a psychiatrist for care and support and also keep working with your docs to track down a cause of your physical symptoms.

I can not recommend seeing a psychiatrist enough. Especially one who specializes in somatoform disorders. Not because I'm dismissing your physical symptoms, but because a psychiatrist who specializes in such disorders can help you sort out if your symptoms are influenced or worsened by brain chemistry, or if they are straight up physical issues. They are MDs with a specialty in psychiatry and are also able to support you as you search for answers. I did this, by the way, and have NEVER regretted it. The fact you attempted to commit suicide indicates an extreme need for mental health support.

This is in no way dismissive of your physical symptoms, but you need to make sure you have adequate support for all your symptoms, not just the physical. Feel free to go back through my posts to read how much a psychiatrist helped me as I was going through the diagnostic process.

Best wishes

Sorry to bother you, but I can't seem to find those specific posts about your diagnostic process.

I clicked on "find more posts by ♥ ShiftKicker but only found your replies to other people.

 

[Nikki J]

Go to her profile page, click on statistics and choose threads rather than posts. You can retrieve her initial threads that way. It does not work for everyone. I believe it only holds 100 threads but it works for her. I checked

 

[Atsugi]

Seriously, AJ, with respect, and I'm wishing you a happy life.
To that end, I say: Shrink, shrink, shrink, shrink, shrink!


One: You have real symptoms that need physical doctors.
Two: You have real problems that also need a medical doctor who understands the mind; that's a psychiatrist.
Three: I don't see any ALS in your list.

 

[lgelb]

Central sleep apnea would not be typical of early ALS, but I think we all agree that you don't have ALS based on what you have presented. I think you may be mixing up NCS and EMG as NCS would not rule an EMG in or out in ALS.

But the main thing is you are wasting your life fearing and living in illness that psychological treatment (as opposed to throwing you more drugs) would probably help greatly, not to mention the possibility that you will actually succeed in committing suicide or creating new health problems from any additional attempt.

So if your current team isn't up to it, I would spend the time that you are living in fear trying to find the help you need. The more you do for yourself, the more you will see what can be done and that should take the place of visiting sites like this.

Best,
Laurie

 

[AJ1985]

Thank you all for your replies.

I have continued to see my usual psychiatrist/counsellor.

On Monday I have follow ups with a neurologist and neuropsychiatrist.

Hopefully this will lead to some teamwork to help me figure out what is actually happening.

 

[AJ1985]

Central sleep apnea would not be typical of early ALS, but I think we all agree that you don't have ALS based on what you have presented. I think you may be mixing up NCS and EMG as NCS would not rule an EMG in or out in ALS.

But the main thing is you are wasting your life fearing and living in illness that psychological treatment (as opposed to throwing you more drugs) would probably help greatly, not to mention the possibility that you will actually succeed in committing suicide or creating new health problems from any additional attempt.

So if your current team isn't up to it, I would spend the time that you are living in fear trying to find the help you need. The more you do for yourself, the more you will see what can be done and that should take the place of visiting sites like this.

Best,
Laurie

The doctor who performed the NCS on me would not perform an EMG because he thought it wasn't necessary after looking at the NCS results.

 

[Nikki J]

That speaks volumes. If there was the tiniest whisker of suspicion that an EMG would reveal any problem ( and EMGs show many things not just ALS) the doctor would not have refused

I hope you find the care and support you need on Monday