ALS diagnosed !!

[Skippa]

Sheesh, the kind of news we all fear, nobody wants to be told that. It's the kind of thing that always happens to other people... until it isn't.

I truly wish it turns out to be "just another weird ME symptom" (never thought I'd find myself saying that!).

Good luck and all the best @Omar88

 

[bombsh3ll]

I'm so sorry you're dealing with this Omar.

I'm not a neurologist, I'm a GP in the UK but I have to say the symptoms you have described do not sound like ALS to me. Whilst I can't say you don't have it, with that presentation it would not be the first, second or even tenth on my list of diagnoses.

As Kina says, the autonomic nervous system which controls things like heart rate and blood pressure is not affected in ALS. I think there is only one reported case in worldwide literature of an ALS patient with autonomic instability, who may well have had a separate co-morbid condition. Positive autoantibodies are also not typically found in ALS - the ANA is more suggestive of an autoimmune disease.

With regard to the random muscle twitching and spasms, I and many others here get this. It can be due to electrolyte disturbances - even if you have gone from the high end of normal to the low end of normal range potassium or magnesium etc in a short space of time so never had any abnormal lab results - or to general irritability/hyperexcitability of the nervous system. It is called benign fasciculation.

Patients with ALS do get muscle twitching, but they rarely seem to notice/complain of it. They typically present with at first localised muscle weakness and wasting which slowly progresses to affect other areas eg they may have one hand or foot that is weak in isolation at first, or may notice a change in their voice or problems swallowing especially liquids.

I know it is easy to say and hard to do, but get thorough neurological testing including EMG (electromyogram) before assuming the worst.

Look after yourself

 

[btdt]

"Recently, I have been working as part of a team of experts evaluating patients injured from a refinery release in the town of Crockett (investigating the results of the Catacarb spill of August-September 1994) adjacent to the Carquinez Bridge in northern California. UNOCAL had a leak in their tank which grew and released Catacarb and other toxic pollutants which drifted onto two entire towns. Over 700 patients have come into the Good Neighbor Clinic in Crockett (paid for but not run by UNOCAL) because of symptoms; more are on the waiting list. Patients in general have eye-damage; breathing problems; immune abnormalities; rashes; increased mole size; skin tags; possible neuroendocrine disorders (abnormal menstrual periods); neurological abnormalities that include memory, concentration, decreased verbal fluency, and motor problems; and one has a serious movement disorder. Many, but not all, have developed MCS."http://www.anapsid.org/cnd/mcs/bastienmcs.html

There are not many documents that point out that mcs (multiple chemical sensitivity) can cause movement disorders that do not show on testing what would normally be on testing of a person with a movement disorder.

Of late I have learned that MCS is now thought to be an associated with CFS and fibro... which I have had 30 + years. Maybe after a long time you get mcs.. I don't know.
I do know that there is a treatment options
http://www.aehf.com/articles/treatment_options_mcs.html
so it is not a complete dead end just close.

 

[btdt]

this is what I was looking for
With provocation-neutralization, potential treatment vaccines may be drawn up for foods, chemicals, inhalants, microbial substances (like mixed respiratory vaccine and fluogen), and individual bacteria produced from autogenous vaccines; the latter are particularly helpful in patients with chronic rhinitis or sinusitis.
the name I got from here
http://www.aehf.com/articles/treatment_options_mcs.html
there is one place in my province that does this and they are not covered by insurance it takes cash... they had a two year waiting list when I first called since they are no longer putting people on the list as the wait got beyond 3 years.
When I talked to the people at this clinic I was told they have people coming in wheel chairs dx as having ms or other illnesses they treat them I did not ask if they cure them as I don't expect a cure at this point maybe I shoot too low. To walk is good and to keep walking is what I am shooting for even it is jerking and odd looking life to me means I can walk. period... maybe there is a place like this around you it can't hurt to take a look... wishing you well..

 

[btdt]

https://static1.squarespace.com/sta...de025/1410769410474/Killing+Us+Softly+1.3.pdf
Breathing affected in cfs mcs... according to this doc who has worked in this area for decades
"Reworking the figures, we learned that in an average night’s sleep of eight hours, nearly two hours was spent in apnoea, presumably with a compensatory hyperventilation after each apnoeic episode. No wonder people woke feeling unrefreshed in the mornings! In addition, we realised that this was evidence of brain injury at a fairly profound level, interfering with the normal neurological mechanisms controlling respiration during sleep. We have yet to really follow this aspect of the illness up, but I believe that it may yet provide some critical insights into the illness. I will be prepared to bet that the sleep clinics will grab this finding, and make it really pay, especially as the adult sleep apnoea falls out of fashion."

Keep in mind he wrote this book years ago and continues to treat patients today the free books is called "Killing Us Softly"
link above
more
"Firstly, there is a massive crossover between multiple chemical sensitivities and chronic fatigue syndrome in terms of symptoms and disability. I personally believe that they are different aspects of a single group of illnesses. My rule of thumb was simply that, if the person’s primary complaint was apparently triggered by chemical exposure, and heightened sensitivity to the effects of chemicals was a major, early onset and obvious component, the best description was multiple chemical sensitivities. Otherwise, chronic fatigue syndrome was the common diagnosis."
this is a small book written by the doctor years ago if you search breathing you will see the rest which I think will be a clue into what is really going on in this disorder. Lost opportunity here and not following it up imho

 

[patient.journey]

ALS does not affect the heart as far as I know because it's a disease that affects the voluntary muscles. Have you been referred to a cardiologist for the heart palpitations?

I have muscle spasms a lot. Eye twitches. Not ALS.

Is your tongue twitching accompanied by difficulty swallowing?

I wouldn't think the worst until you have some further tests. Your symptoms could be caused by other things. Some of your symptoms look like a magnesium deficiency. Who knows but you need to have other causes ruled out before a diagnosis of ALS can even be considered.

yes since a year it started with difficulty specially for drinking and less for eating and since a month and half my tongue is twitching

 

[patient.journey]

I'm so sorry you're dealing with this Omar.


Patients with ALS do get muscle twitching, but they rarely seem to notice/complain of it. They typically present with at first localised muscle weakness and wasting which slowly progresses to affect other areas eg they may have one hand or foot that is weak in isolation at first, or may notice a change in their voice or problems swallowing especially liquids.

I know it is easy to say and hard to do, but get thorough neurological testing including EMG (electromyogram) before assuming the worst.

Look after yourself

unfortunately am dealing with those symptoms and i thought they are a cfs symptoms but my doctor took me to this path

 

[bombsh3ll]

I'm so sorry you're going through this Omar, & hope you get a definitive answer soon and that it does turn out to be something else. There are still other neurological possibilities & I hope you have access to good medical care. I will pray for you. Which country do you live in? You mention visiting KDM clinic in Belgium in August - do you have the opportunity to have testing with a local neurologist prior to this? Sending you best wishes.

 

[RogerBlack]

unfortunately am dealing with those symptoms and i thought they are a cfs symptoms but my doctor took me to this path

Others have raised the possibility that it's a misdiagnosis.

The question is - would you get better treatment with a 'proper' diagnosis.

If Rituximab or other effective treatments were available for CFS, this question would be different.

 

[Marky90]

You need to take an emg. Fasciculations and palpitations does not mean u have als..

 

[Tammy]

Omar..............sorry to hear and you are probably scared off your ass.................BUT first of all there is NO specific tests for ALS.........NONE. ALS falls into a category of mystery neurological symptoms..........just like CFS falls into a category of mystery illness. Early into my CFS one of my neurologists thought I had this..................I had some pretty severe neurological symptoms..............but 18 plus years later............I'm still here..............and in fact I have improved which I didn't think was remotely possible.

 

[erin]

Omar, could you not get a second opinion? Are they absolutely sure that you have ALS?

 

[caledonia]

I hope your doc is wrong and you don't have ALS.

In the meantime, you have many symptoms of electrolyte deficiencies. My suggestion would be to try some type of electrolytes such as coconut water, magnesium or soaking in epsom salt water and see if it helps.

You should know pretty quickly if it's going to help.

 

[Gingergrrl]

unfortunately am dealing with those symptoms and i thought they are a cfs symptoms but my doctor took me to this path

Please keep up posted and we are all rooting for you 100%. Doctors can be wrong and can throw out diagnoses without any evidence or on the flip side dismiss a symptom that turns out to be life-threatening. Hoping you can get a second opinion if needed and see a neuromuscular specialist and get an EMG, etc. At this point, your symptoms could be due to so many different causes. The not knowing is torture and you are handling this all very well.

 

[btdt]

@Tammy if you have a place on here where you tell what you have done to improve could you please post a link to it.

 

[kangaSue]

Positive autoantibodies are also not typically found in ALS - the ANA is more suggestive of an autoimmune disease.

Not the usual suspects anyway. Calcium homeostasis alterations and associated structural changes are consistently reported and various investigations have provided evidence indicating that a proportion of patients with ALS have antibodies directed against other targets such as neurofilaments, Fas receptor (CD95), fetal muscular proteins, and vascular antigens.
https://www.hindawi.com/journals/nri/2011/497080/

 

[Silence]

I am currently going through something similar to you, and even a few neurologist told me I could have ALS. Mine started with bilateral calf pain and I am talking about extreme calf pain along with constant muscle fasciculations(twitches), Shortness of breath when talking, foot drop, neuropathy, and muscle weakness, tachycardia, and palpitations . I had EMG/NCS and it showed bilateral partial denervation of my nerves with elevated ck and aldolase which meant muscle damage too. This was almost 8 months ago. Today my muscles have atrophied quite a bit and the damage is heading towards my hand and upwards along with my legs. I went to see a specialist at a Neuromuscular clinic at a Teaching university here in my hometown and they believe its very hard to say if I have a motor neuron disease due to a lot of other abnormal testing- many vitamin deficiencies, but they said most likely I don't have ALS. Some specialist have speculated mitochondrial disease or some sort of myopathy of a genetic cause (my twin has the same symtpoms) which I am still pursing.

Right now the diagnosis I am given is protein malnutrtion/wasting syndrome/beri-beri ( a severe b1 deficiency) due to a prolonged diet of nothing but white rice and vegetables. I've testted low on b1, b2, vit D, coq10,. I am having trouble taking the vitamins orally because of My severe sensitivities and severe gut problems, so I have a long road ahead of me too.

Its probably in your best interest to see someone that deals with motor neuron diseases, especially ALS. I would even see multiple specialist that deal with ALS before considering this diagnosis.

Like you, I thought my symptoms were due to CFS and waited too long to see a specialist while the damage got worse. I also saw KDM, but he didn't provide much help or explaination in diagnosing my current issues aside from my CFS issues, along with Dr. Chia. They tried to explain these problems with some sort relation to CFS, but I don't think that's the right way even though their may be a link. I think its best to stay clear of CFS doctors and stick with specialist who can rule out ALS/Motor neuron diseases.

Like others have said, I am not sure the symptoms you describe can lead to a definite diagnosis of ALS. It would seem very premature from the way you describe your symptoms. You can also visit ALSFORUMS.COM where people with ALS and their family members talk about, in detail, about their condition, symtpoms, what to expect, getting a proper diagnosis and how difficult it can be to get a diagnosis especially in the early stages if symptoms aren't glaring.

Have you had an EKG to check your heart or Echocardiogram.

I hope you get a proper workup to rule-out ALS. All I can say is try not to worry when the diagnosis is not certain. I wasted so much energy worrying If I have ALS and sometimes still do, but Keep your head up until the doctors you see are sure.

Referrals can take a long time, so just a tip: Ask your doctors to put in an urgent referral to the specialist and mention possible ALS diagnosis. This got me in much quicker. What would have taken 6 months to see a specialist only took 1 month when I mentioned How severe my symptoms were along with ALS.

 

[Alvin2]

Like you, I thought my symptoms were due to CFS and waited too long to see a specialist while the damage got worse

Thanks for posting this, it also makes me think.
What would you have done differently, since you only had the ME/CFS diagnosis at the time?

 

[Gingergrrl]

Thanks for posting this, it also makes me think. What would you have done differently, since you only had the ME/CFS diagnosis at the time?

Hi Alvin, I know you are asking @Silence (not me ) so I will keep this brief but feel compelled to reply b/c I think your question is so important. I was given a CFS diagnosis by a GP in early 2013 and basically fired by her and told there was no treatment. I accepted this diagnosis as fact as I continued to get worse until I could not stand/walk at all without a wheelchair 24/7. I saw doctors but if they had a specific theory of CFS, they just plugged me into their theory whether they had examined me or reviewed my test results, etc.

I began working with an ME/CFS specialist in mid 2014 (who initially accepted my CFS diagnosis b/c I do meet many of the criteria). But as time passed, he studied and reviewed my case in it's entirety and now feels that I do not have CFS, that my symptoms are different from most of his CFS patients, and that we needed to keep digging deeper even though it was unclear what my true diagnosis is called. I have POTS & MCAS but something else was going on, too.

Long story short, after a neuro found I had a weird calcium autoantibody (but then totally dismissed me), my main doctor took this very seriously and understood that this autoantibody required cancer checks and that I probably had lots of other autoantibodies, too, and he was correct. He felt high dose IVIG was my best chance at improvement and he was 100% correct and this led to Rituximab (in 2 wks, hasn't happened yet).

So, the point of my story (damn, it got long after all) is to not accept anything as fact until you have the evidence and for Omar and Silence, to see specialists in ALS/MND vs. a random doc who is just guessing. The docs who will say, "I don't know what's going on but let's keep looking" are the heroes in my book vs. the ones who have a single theory that they plug all patients into.

Am still praying for you @Omar (and now @Silence, too) that an explanation will be found that it is not ALS. It may not apply but many autoantibodies cause muscle weakness and are worth checking into (in addition to the EMG and nerve conduction tests with a good neuromuscular doc, although I know a good Neuro is sadly very hard to find).

 

[Alvin2]

Hi Alvin, I know you are asking @Silence (and not me ) so I will keep this brief but feel compelled to reply b/c I think your question is so important.

Thanks so much for your reply, its very helpful

I was given a CFS diagnosis by a GP in early 2013 and basically fired by her and told there was no treatment.

I hate these kinds of docs

I accepted this diagnosis as fact as I continued to get worse until I could not stand/walk at all without a wheelchair 24/7. I saw doctors but if they had a specific theory of CFS, they just plugged me into their theory whether they had examined me or reviewed my test results, etc.

I know exactly what this is like, i was told i had delayed sleep phase syndrome and it "explained" everything, and the symptoms i had that were obviously much more severe and outside that condition didn't matter because thats what was wrong with me. Took many years and a lot of pushing to get ME/CFS diagnosed, i made many "enemies" on my way even though i was right.

Long story short, after a neuro found I had a weird calcium autoantibody

How did you get to this?
Mine went the sleep disorder to MRI/brain abnormalities to neurologist who knew what i had even though my symptoms were more vague (more delineated now) before i got the ME/CFS diagnosis.

The docs who will say, "I don't know what's going on but let's keep looking" are the heroes in my book vs. the oneas who have a single theory that they plug all patients into.

Indeed, i want to be sure i don't have something else treatable, but its hard to find ME/CFS specialists or at least someone who knows what other tests to get done.

Thanks for your reply, i am always happy when anyone with useful information replies to one of my posts, even if i quoted someone else when asking something