Múltiple symptoms and no diagnosis yet.

[danielsp]

Hello my name is Daniel and I am 37 years old. About two years ago I had a strange series of events that are still unexplained (I am just elaborating in this as a method of accurate historic recollection). I seemed to have what seemed to be a small stroke (my face dropped as well as the entire left side of my body). It appeared to be a minor ischemic event but when fully checked (CT scan) I had no scarring in the brain. I went to a neurologist in my home country (Colombia) as I was there settling some affairs (my father had recently died and I was finishing up a divorce). After doctors at the hospital that admitted me under the fear of cardiac emergency and released me without any findings I came to the mentioned neurologist that was a close friend of the family. He could see that something had happened but could not fully explain it. He recommended I come back home (The US) and continue with a more profound cardiological testing, he suspected it could be something neurological and in fact mentioned PrintzMetal angina. I flew back home and got busy and I didn’t really follow up in the quickest of fashions.

Finally, a few months later (5-6), I decided to contact a cardiologist at a University Hospital and take in the previous exams as a follow up to what had happened. In short, testing continued for a few months and no events were recorded. I have always been an athlete (endurance), I was an avid runner running up to 5 miles a day and a swimmer (5.000 meters a day). I would only do one or the other but it gives some perspective.

Throughout that year I began to lose a lot of weight (unexplained). In fact, I who had never been one to eat many carbs or sugars (actually quite seldom), began to eat more of these in an effort to keep weight on. I must have lost close if not excess of 60lb. I was very lean but I just could not keep the weight. Coupled with this my sleep or ability to sleep suffered Immensely. I have never been a good sleeper but my sleeping pattern was and stillis very compromised. I did not get any sleep at all on many a night and was lucky if I got perhaps 3 hours. This is still the case I’ve had short periods of better sleep but overall it seems that my insomnia is very harsh. Part of the compromise in sleep was the fact that I had many “sleep-stars” a night (5-10-15 even 20). At the beginning I wrote it off as night terrors but then my partner and now fiancé began to tell me about my “acting out in my sleep”. Very active dreams with a lot of motion and she was even startled as I was clearly active either digging or searching or acting in whatever was going on in the dream.

Recounting back to the testing cycle, after having every test in the book, nothing seemed to come up. Finally my Cardiologist spoke to me and said that he could let me go and continue life normally but he had a feeling that something may happen and so he decided he would implant a loop recorder to monitor my heart more closely for an extended period of time. I accepted his request and that was that. Shortly after, his office called me and asked me come in for what would be a 10 minute procedure. They explained it was scheduled a month out, but he would be in town that Friday, and he could fit me in. I agreed to go in (it was Thursday evening) and proceeded to call a friend to drive me.

The next day I arrived at the hospital and began the prep for the small intervention. I asked the nurses and doctors not to use any narcotics or strong anesthetics. They agreed, and confirmed it would be 10 minutes and the pain would be seldom if any. I was wheeled into the OR and had a Defib stuck on my body as a normal precautionary method. The Doctor said to the nurses no to even put me on the operating table as he would be done very quickly. He began to palpate the area he would place the monitor into (remember I said there was nothing in my body as I had requested nothing be used). I felt a little faint but he said, you’re in the OR, nothing to worry about. I felt I drifted very peacefully and suddenly I felt the doctor calling. He asked me if I recalled anything, I said no, he proceeded to tell me my heart had stopped for almost a minute and that I was back now, thanks to being where I was at that specific moment.

This was in no doubt a miracle!

I was fitted with a pacemaker and life continued with no real explanation as to what had happened. The doctor however, clearly expressed his opinion that I should see a neurologist to see if there may be any scarring or anything that may have induced my “clinical death”.

Now, I begin with what happened afterwards. I am someone who is very aware of my body (in every sense). A couple of weeks later I began to notice a slight difference in my left leg. Something was just not exactly right. It wasn’t tingling, but some sort of heaviness. I walked a lot as a method of post surgical recovery but I noticed my leg would seem to lag. In post operational checkups I mentioned that my leg was not feeling quite normal, but he checked and nothing seem to jump out at him, he did however insist I see a neurologist.

So, life continued (this was in June of 2019). I noticed that my leg was not getting better, in fact it was weaker every day. My walks began to reduce themselves slowly. Two months passed and suddenly I felt my arm was very swollen (this is where things begin to get really weird). I was in Colombia again (only a few days) and my left arm was significantly bigger than my right. My first thought (blood clots). I was rushed to hospital (my arm would swell up and down) and was given a lot of testing for three days that they kept me. Again they found nothing, not even clots (after two if not three Doppler tests). I was stoked to go home and have myself checked out. I was released on a Saturday, flew back Sunday, and saw my cardiologist Monday. He checked me, arm swollen, no pain but ordered another Doppler. The next day I went in for the test, and within 3 min, a doctor came into the room and I was rushed to ten ER. Severe DVT. It was thought that it may be related to the pacemaker implant, but still, they weren’t completely convinced due the the severity and my young age as well as healthy physique and lifestyle.

Testing continued and my weakness as well. An MRI revealed no lesions and no scarring of any sort. My weakness continued to evolve. In the shower I noticed my leg (left leg) seemed quite a bit smaller than my right (my weakness continued). The neurologist sent out tests looking for lupus of which my ANA factor came back positive and speckled, later the rheumatologist (this is about a month ago) ruled out lupus but confirmed the difference between my left and right side. Other markers that were off included DRVVT She also spoke to me frankly and explained she could not give me a diagnosis as the head neurologist on the clinical team on my case, was the only one that could, but she did advise lso, throughout this last month and a half, perhaps two, my voice has gotten hoarse, about three months ago I began to feel I was not swallowing the same, in fact I noticed I would choke on crumbs, Cough as they would not grow down the same. I began to notice my saliva seemed to Pool in my throat. I know there is a change. My sleep continued to suffer, but now I feel I find it really hard to breathe when lying. It is not like apnea, as I am still awake and aware of the difficulty. I also find that I choke on my saliva. In the last two months I have fallen so stupidly 4 times. The last one (two weeks ago, I feel on the fifth stair of the house and it shook me). I feel clumsily if the dining room chair, fell against the bed while making it, all clumsy falls.

I have been walking with a cane for about three months, it helps me focus on movements and perhaps prevent falling. I have noticed weakness now spread to my left arm and hand. i notice I cannot eat the same as I did before with chopsticks. I cannot hold my phone in my hand (left) for any period longer than perhaps 1-2 min. It seems to get very tired and stiff. I am dropping many things that I try to hold. Today I broke a plate, I drop soda cans often and it is not Easy for me to fully grip boxes either.

My muscles (in my leg) have begun to feel different to the touch. Not only my touch but the touch of my fiancé, they seem more spastic, stiffer.

I have started physical therapy, and although I still have strength it is the little things I cannot do well. I cannot crunch my toes easily, in fact it is very very difficult. I have very little endurance, energy is a most valuable and scarce resource. Two months ago I was still walking about 1-1.5 miles a day. Today I am lucky if I have the energy to walk half that. I would say perhaps a third of that is a safer bet. I try to be active, but I am so tired, so fatigued. I feel my leg getting weaker, and I feel it spreading along my left side. I cannot hold my cane on my left very well anymore, but fortunately my right ( the correct side for holding for left weakness) has not yet decreased as much.

I had an EMG performed a week and a half ago but surprisingly I have not been given the results yet, even though I know that the doctor has reviewed them. (He himself did the test). The EMG had to be done by a physiciandue to the fact of my past DVT episode for which I take blood thinners. I know as well that all nerves that are usually tested in hands and legs could not be intervened due to added risks inherent in te use of blood thinners.

finally I have noticed that when tired my voice is most affected. It is harder for me to maintain proper posture when tired as well, I seem to lack the strength I did in my neck to hold myself up the same. Again, I am very aware of my body, and I do feel a substantial difference that has not let up and continued to be compromised in the last 6-8 months.

I am sorry for the long winded post, but I had to get this off my chest after visiting the forum for a few weeks and just reading. I fear it may be ALS, not entirely for my own sake, but that of those who love me. I feel their fear and it breaks my heart. My fiancée and I are expecting our first child, we got pregnant only a little while after my pacemaker implant (talk about a miracle baby) and I know that seeing me decay is breaking her heart.

I hope that soon we will have some answers, if only to satisfy the human need to understand. In helping her acceptance, I know that reduced stress and loving connection can go a long way in ten quality of anyone’s life.

many feedback or experience will be very helpful.

thank you.

 

[lgelb]

I'm sorry to hear about all these issues, but I don't see any relationship with ALS. Certainly, you've the right to ask for the EMG report. Given what you describe, I would be seeking a second opinion with another cardiologist and a hematologist, as a start, since you've had DVT, cardiac arrest, and progressive symptoms on top that could relate to clotting states/factors and/or impaired blood flow. I don't know what hereditary/acquired diseases and malignancies you've been tested for, but it does sound as if something is amiss. An academic medical center is where you need to be.

Best,
Laurie

 

[danielsp]

I'm sorry to hear about all these issues, but I don't see any relationship with ALS. Certainly, you've the right to ask for the EMG report. Given what you describe, I would be seeking a second opinion with another cardiologist and a hematologist, as a start, since you've had DVT, cardiac arrest, and progressive symptoms on top that could relate to clotting states/factors and/or impaired blood flow. I don't know what hereditary/acquired diseases and malignancies you've been tested for, but it does sound as if something is amiss. An academic medical center is where you need to be.

Best,
Laurie

Thank you for your response Laurie. I gave a history but I do not think the two are related even though it may seem they are because of the gravity of events. As far as cardiological health (even though this may sound crazy) I am in perfect condition. In fact the ER primary physician at the academic hospital said. This is not a hardware problem, it a a software issue. It is a metaphor relating to something more along neurological lines rather than physiological.
Additionally, there are various journal publications, I cannot directly quote now, that see some direct correlation between clotting issues (DVT) and ALS. Other publications and testimonies speak of onset of ALS symptoms after surgical interventions, they go as far as to hypothesize certain exposures that may result in symptomology. I believe I have read of a particular case in which onset was seen (with similar timeline to my own story) after a hip surgery. I’ve also read testimonies of onset after somewhat profound mouth surgery.

I understand your point and in that sense, can you think of any genetic markers that may be telling and that I may be tested for? I am open to any and all information that I have not yet considered let alone the doctors.

I agree that the succession and amount of happenings, makes this a difficult case, but I cannot explain the bulbar changes (horse voice and swallowing) as well as the unilateral onset and subsequent spreading of weakness and the decay of si own coordination (falls, dropping things with visible regularity. Etc..)

Lastly, there are other factors to consider, such as an ongoing deterioration hasn’t halted or bettered, an absolute absence of pain other than joint fatigue in the morning, and a lack of any scarring Or lesions in the brain.

Are there other neuromuscular afflictions that could explain this? What are your thoughts?

The difference in the protrusion of my toe structure in the left foot as in relation to the right one, is quite vast.

thank you for your reply and Ihope that here I may find support and perhaps ideas as to where to continue looking.

I have posted pictures of my feet taken on the spot as to relay the difference I am speaking of.

thank you for your support.

 

[lgelb]

It is neither your job nor ours to read the tea leaves in your foot protrusions, which may relate to foot problems if anything. Those are the province of a podiatrist.

When I read concern about the lack of pain, clean brain CT, a history of surgery, etc., you've entered such common territory as to make further discussion on those fronts meaningless. And I wasn't talking about your heart, but rather your blood and blood vessels. But that's not our scope here, either.

I'm sure you perceive the bulbar dysfunction you mention, but you do not have our perspective of links between anxiety and those perceptions. So we can't presume that you have any features of ALS. That's where clinical strength/mobility testing and the EMG come in, among other things.

If you had a family history of ALS, and symptoms to match, genetic testing might make sense. If there is suspicion of inherited disease, that is what a medical geneticist evaluates.

If/when you have an EMG report to post, feel free to do so. Apart from that, I don't think we have anything to offer you here.

 

[danielsp]

It is neither your job nor ours to read the tea leaves in your foot protrusions, which may relate to foot problems if anything. Those are the province of a podiatrist.

When I read concern about the lack of pain, clean brain CT, a history of surgery, etc., you've entered such common territory as to make further discussion on those fronts meaningless. And I wasn't talking about your heart, but rather your blood and blood vessels. But that's not our scope here, either.

I'm sure you perceive the bulbar dysfunction you mention, but you do not have our perspective of links between anxiety and those perceptions. So we can't presume that you have any features of ALS. That's where clinical strength/mobility testing and the EMG come in, among other things.

If you had a family history of ALS, and symptoms to match, genetic testing might make sense. If there is suspicion of inherited disease, that is what a medical geneticist evaluates.

If/when you have an EMG report to post, feel free to do so. Apart from that, I don't think we have anything to offer you here.

I want to thank you for your response. I understand what you are saying as I understand that time cannot be wasted with addressing situations that are out of the norm. Time is precious and I respect it so.

I just want to leave this discussion with myself expressing a series of mixed feelings with your reply. I must share these in order not to generate some form of resentment towards this forum as I believe it is a valuable tool in fighting such an unforgiving illness.

As stated above, I must share my deep hurt because I feel insulted by your insensitivity and lack of consideration. I would like to remind you that many of us (and yes I include myself) struggle with doctors and other professionals understanding our ailments throughout this diagnostic process. I want to inform you that research on part of a medical team at a prestigious university academic research hospital of vast proportions has led me towards the final stages of a very posible diagnosis of ALS. As I mentioned above, such has been the opinion of the rheumatologist on this team, a doctor published in numerous medical journals and an ongoing researcher. I reached out with my post as an element of understanding and finding posible strands within others as that I may better aid my part in such research. I am a researcher myself, quite an avid and profound one. The direct references to texts and documents that I believe I mentioned above about correlations are broadly studied and quoted within many in the ALS research community. In fact you were very quick to speak about the absence of pain being a marker discarding such a diagnosis, yet this statement is vastly contradictory to much if not the majority of peer reviewed journal articles that have been published on the subject. In fact I would (as you are a moderator) invite you to explore the newer thesis regarding ALS that consist of a possibility of varying afflictions that because of lack of research and lack of past funding have been consolidated into one broad definition because of the unfortunate diagnostic codes in the US medical system.

I am presenting many of the diagnostic markers as well as a clear evolution within a short timeframe. I am not one to self-diagnose but I am one that does not ignore the possibility dueto the vast similarity with other ALS progressions that are well documented. I am not here wasting anyone’s time, but offering a detailed timeline of events ( I believe myself to be an accurate and thorough historian) that can in one way lead to possible markers that arise before diagnosis and may very well serve the ALS community amply in the future. I feel that your disregarding remarks about a seeing a podiatrist are both insulting and highly unethical yet I do not want to judge, as I myself do not want to be judged. You also speak about my anxiety, and I must reach out to you and express that you have not met me, have not seen me in person and do not know if my writing is anxious or not. I have worked in te mental health field for some time and as well as permanently furthering my education I have also permanently sought out my own growth with the help of very qualified professionals who I still see today.

I will not further any more discussions as I don’t want to waste your valuable time, but I must post this message because a response like yours may be very damaging to someone dealing with the possibility of a life ending condition and the very large probability of them having a shaky state of mind.

i will be sure to send my EMG results along this thread as soon as they are discussed with me by my doctor. The medical team effort is leading towards a diagnosis in the next few weeks, reason that I believe EMG results have not been shared with me until the complete battery of this last stage of testing is completed.

I hope that I have made my point clear and I also hope that I have generated no resentment with you or anyone in this extremely valuable community. I hope that I may learn form this experience as I hope that you may learn from it as well.

I wish you a happy new year, as it is still safe to say we are but a the beginning.

Daniel.

 

[hospicesw]

Daniel-
I'm sorry you feel resentment toward a response. When I read your post I hear someone who has reportedly had vascular incidences, cardiac incidences, weight loss, fatigue, perceived weakness, and worry. When a cardiologist says it's not hardware, but software... that means perhaps electrical circuits that are bad-leading to a disturbance in rhythm-like SVT or VT or vagus nerve, etc. Many things cause weakness and fatigue. If you have had all the testing done, including an EMG, from a high ranking teaching medical facility, why not just wait until that time for dx? My impression is you are feeling anxious-you have a child on the way and are thinking the worst. Anxiety can present with the symptoms you have described. I'm not saying it's "just anxiety", because anxiety is a powerful and terrible thing. I see no differences/problems in the pictures you have provided showing your feet.

What I hear Laurie saying is that the perception of weakness, etc really doesn't mean much without the proof of actual loss of strength. You have taken the steps to try and figure this out and will have answers shortly....but have posted a long history, where you have already come to a conclusion....and are offended when you are told they aren't doctors, and from what they know it doesn't sound like ALS. She also says that should your EMG/testing show you have ALS to come back to discuss. I don't see anything insulting in that. I hope you get excellent results and can move on either way.

On a side note is this: Oddly enough most of the ALS patients I have worked with really didn't worry about most of their issues until they became very undeniable-they wrote symptoms off as aging or stress or overworked. Folks that are super in touch with every sensation in their bodies tend to be anxious people. It doesn't mean anxious people don't have ALS, but it certainly means there are a lot of anxious people worrying about ALS (and many other diseases) who really are being robbed of peace because they have none of these catastrophic diseases. Also-if someone has a "shaky state of mind"-which you claim you don't and can't be perceived from your text-they really need to be seeing a mental health professional soon (rather than an internet forum on an undiagnosed problem) to help with the reality of the worry and/or the reality of the disease.

Best to you in your journey-especially with being a soon to be new dad!!

 

[danielsp]

Daniel-
I'm sorry you feel resentment toward a response. When I read your post I hear someone who has reportedly had vascular incidences, cardiac incidences, weight loss, fatigue, perceived weakness, and worry. When a cardiologist says it's not hardware, but software... that means perhaps electrical circuits that are bad-leading to a disturbance in rhythm-like SVT or VT or vagus nerve, etc. Many things cause weakness and fatigue. If you have had all the testing done, including an EMG, from a high ranking teaching medical facility, why not just wait until that time for dx? My impression is you are feeling anxious-you have a child on the way and are thinking the worst. Anxiety can present with the symptoms you have described. I'm not saying it's "just anxiety", because anxiety is a powerful and terrible thing. I see no differences/problems in the pictures you have provided showing your feet.

What I hear Laurie saying is that the perception of weakness, etc really doesn't mean much without the proof of actual loss of strength. You have taken the steps to try and figure this out and will have answers shortly....but have posted a long history, where you have already come to a conclusion....and are offended when you are told they aren't doctors, and from what they know it doesn't sound like ALS. She also says that should your EMG/testing show you have ALS to come back to discuss. I don't see anything insulting in that. I hope you get excellent results and can move on either way.

On a side note is this: Oddly enough most of the ALS patients I have worked with really didn't worry about most of their issues until they became very undeniable-they wrote symptoms off as aging or stress or overworked. Folks that are super in touch with every sensation in their bodies tend to be anxious people. It doesn't mean anxious people don't have ALS, but it certainly means there are a lot of anxious people worrying about ALS (and many other diseases) who really are being robbed of peace because they have none of these catastrophic diseases. Also-if someone has a "shaky state of mind"-which you claim you don't and can't be perceived from your text-they really need to be seeing a mental health professional soon (rather than an internet forum on an undiagnosed problem) to help with the reality of the worry and/or the reality of the disease.

Best to you in your journey-especially with being a soon to be new dad!!

Thank you for your response. I believe there has been a misunderstanding based on your reply. I am not the one with a shaky mind. But I find it feeble to defend that thesis. I thank you for getting back to me and I am not carrying any resentment, but instead chose to respond as to not generate one. I believe that I am clear in my writing as well as precise in both choice of words and structure.

I am sorry for having wasted your time and I take responsibility for my obvious worry. My perceived loss of strength is not perceived but measured week to week in physical therapy. My loss of muscle mass has also been measured week to week as pertaining to visual and physical measurements performed at the clinics own physical rehabilitation center. Again I am sorry and feel quite silly in continuing responses when clearly you are right that I do not meet the requirements to share in your forum. I understand this and honestly offer my apologies.

My response to the previous post perhaps cane from a point of desperation in which I felt I was not taken seriously when already in the final straight of a long winded clinical diagnosis.

I hope for the best for myself as well, and I must assure you that I do live a full and happy life, every day as best I can, lesson undoubtedly learned after my sudden cardiac arrest. I appreciate your feedback and thoughts regarding possibilities in what seems to be going on in my case. I hope that I may be welcomed back in this forum, should news prove to be consisten with ALS. I assure you that I have no fatalistic thinking but merely looking for support in that I may offer comfort to my fiancé and loved ones, as they appear to suffer much more than myself over a visible and continuos decay.

Once again, I extend my apologies if my response seemed haste and unrequited, and I accept full responsibility in accepting my own worries and anxiety. I was very reluctant to finally post something on this forum, because acceptance of terminal circumstances is so often very hard. I appreciate the hope that you have given me, as there is no doubt you mention with conviction that all this appears to be the result of something else, including stress related afflictions.

I hope that this is the case and all subsided or is bettered soon. I hope I may confide in this forum if the case unfortunately evolves into what seem to be the circumstantial conclusions of my physicians.

Daniel.

 

[Nikki J]

Please let us know when you get your emg report.