Aa
ALS? Something else? (long)
I hope this isn't too long. I'm writing this to bring to my Dr. appointment so I don't forget to mention something to them. I'm 37 years old in case that matters.
Some history:
Dec 92 Mono/Ebstein-Barr virus. I also had white stuff on my tongue (candida). Late 93 Still sick, Dr. called it Chronic Fatigue Syndrome/Post Viral Syndrome. Mid 94 I felt like I had finally recovered from CFS. Still had candida on my tongue.
95 (I think) Thicker than "normal" candida on tongue. Sick enough to go to the Dr. and the Dr. was literally taken aback by and commented that I had candida going all the way down my throat. I definitely got the impression from him that that was unusual.
Other strange symptoms since getting CFS/Epstein-Barr/Candida: rash/skin irritation on the back of my left arm that started some time in 93 or 94. After the CFS seemed to get better I started to have short duration pains in my rib cage. During another check up (96?) the Dr. mentioned that my lymph nodes seemed to be large and he asked if I felt ok. I did. I had noticed that my lymph nodes in my neck often seemed very hard. Occasional blurred vision lasting a few seconds at a time. I don't really recall when I started hearing ringing / buzzing / humming in my ears but it was after feeling recovered from CFS. I don't really recall when this started either but I have peeling skin seemingly all the time on my fingers and hands and some redish spots on my fingers that can take a few weeks or more to go away and that sometimes get a yellowish tint before going away.
97 Vasectomy. Fainted during operation. They had to reposition me so they prescribed Keflex as a precautionary measure. This is the only prescription I remember taking in the last 10 years except for something for the oral candida a couple of times (I don't remember it's name but it wasn't Nystatin powder).
Here's where it get neurological!
Nov 99 That's when I started getting strong, "rapid firing" muscle contractions in my arms and legs and "vibrations" in my feet. I had a few twitches on my head and I had a day or so of having twitches in my eye lids. The "pulsing" was easily visible and sometimes my arms got pretty sore from the "pulsing muscles". I noticed my stomach or intestines being more active than normal and I had some occasional very strong stomach cramps. I have to admit at this point that I had been quite stressed at work for most of 99. I have since been much better handling stress (my wife even will admit that).
Mar 00 Finally see GP about these symptoms. He wants me to see neurologist to rule out ALS. Neurologist checks me out, I have blood work done (Thyroid, Lyme, vitamins, etc.) and get a brain MRI to check for MS. No MS. "Strong" reflexes, no weakness = no tests for ALS. Diagnosis was BFS with slight peripheral neuropathy (toes of left foot).
Nov 00 Follow up visit to neurologist: it seems that the pulsing happens less often (usually as a single or a few slow contractions) but recently I have had more tingling sensations. The tingling is mostly around my toes with some tingling on my nose, lips and tongue (for a couple of days) and some in my hands. A couple of weeks after the follow up visit I had twitching in my eye lids for a few weeks then that eventually stopped. I also started to get pains in my legs, feet and arms.
Dec 00 I had a couple of weeks where I had fairly painful left shoulder and upper arm. That subsided. I have noticed tingling mostly in my left arm (lower arm and hand) and left shoulder blade most likely to happen when sitting down or leaning forward. In the last couple of months I had been getting some tingling on my nose but in the last couple of weeks I have noticed (waking from sleep) that I have tingling/vibrations over my whole face. Not much "pulsing" any more but I still get vibrations in my feet (mostly) with some in the back of my thighs and my torso (feels like it's deep inside my torso).
This is where I really start worrying!!
Jan 01 Shoulders (mostly) and hips started to click or snap doing the slightest move or twist. I started to experience pain on the top of my left foot and ankle upon waking in the morning. I've also occasionally had this feeling of something under the arch of my feet when standing or walking along with increased frequency and more painful pains in my feet (predominately left). My right big toe would occasionally feel as if it was "stuck up" when walking. Arms started to feel kind of sluggish and I've started to get pains in my hands.
Feb 01 Started an anti-candida diet along with Nystatin power and caprylic acid. Through all this my weight never varied much but during the first three weeks of the anti-candida diet I lost 13 pounds (167 to 154 (I'm 6'3")) even though I ate as much as I wanted/could. I have since gained a pound or two back since going off the strictest part of the diet. The candida has mostly left my tongue (Nystatin powder!) and that arm rash is finally gone after 7+ years or so! However, I have had a few days where my arms seem somewhat heavy and sore (kind of like the day after exercising even though I haven't). It has diminished somewhat but they still don't feel quite normal (sometimes they feel like they drop the last inch when moving them). I got tightness in my calves and back of upper legs for a week or so but that has mostly diminished. I also have most recently started having this feeling of something stuck in the back of my throat that I find very, very troubling. This will usually happen after eating but not always. It seems that I have been tripping over my words more than normal as well and having a feeling of being short of breath at times and noticing that I am beathing deeply even though I'm not exerting myself.
Questions:
I found this message board when searching for candida info. Oct 15, 2000 Jeffery T stated that he had systemic mold infection and intestinal candida. Can my symptoms be due to candida? EBV? What kind of tests can be done to detemine if one has systemic mold/candida infection?
Frankly, I'm worried this could be ALS. Could these symptoms in my feet and arms be early signs of muscle weakness? What else can cause these problems with my feet and arms, that feeling in my throat and shortness of breath?
In order to get the Nystatin powder I had to have a prescription. Went to a different GP and she gave me that prescription and set up an appointment with a different neurologist when I described my recent symptoms. It's in a month or so. Final symptom: she mentioned that I had a slight lid lag. Should I ask for an EMG and nerve conduction test? Are there other tests that I should I ask for? Does this sound like something other than ALS?
Sorry this was so long. Thank you very much for any info/advice you can give me.
Some history:
Dec 92 Mono/Ebstein-Barr virus. I also had white stuff on my tongue (candida). Late 93 Still sick, Dr. called it Chronic Fatigue Syndrome/Post Viral Syndrome. Mid 94 I felt like I had finally recovered from CFS. Still had candida on my tongue.
95 (I think) Thicker than "normal" candida on tongue. Sick enough to go to the Dr. and the Dr. was literally taken aback by and commented that I had candida going all the way down my throat. I definitely got the impression from him that that was unusual.
Other strange symptoms since getting CFS/Epstein-Barr/Candida: rash/skin irritation on the back of my left arm that started some time in 93 or 94. After the CFS seemed to get better I started to have short duration pains in my rib cage. During another check up (96?) the Dr. mentioned that my lymph nodes seemed to be large and he asked if I felt ok. I did. I had noticed that my lymph nodes in my neck often seemed very hard. Occasional blurred vision lasting a few seconds at a time. I don't really recall when I started hearing ringing / buzzing / humming in my ears but it was after feeling recovered from CFS. I don't really recall when this started either but I have peeling skin seemingly all the time on my fingers and hands and some redish spots on my fingers that can take a few weeks or more to go away and that sometimes get a yellowish tint before going away.
97 Vasectomy. Fainted during operation. They had to reposition me so they prescribed Keflex as a precautionary measure. This is the only prescription I remember taking in the last 10 years except for something for the oral candida a couple of times (I don't remember it's name but it wasn't Nystatin powder).
Here's where it get neurological!
Nov 99 That's when I started getting strong, "rapid firing" muscle contractions in my arms and legs and "vibrations" in my feet. I had a few twitches on my head and I had a day or so of having twitches in my eye lids. The "pulsing" was easily visible and sometimes my arms got pretty sore from the "pulsing muscles". I noticed my stomach or intestines being more active than normal and I had some occasional very strong stomach cramps. I have to admit at this point that I had been quite stressed at work for most of 99. I have since been much better handling stress (my wife even will admit that).
Mar 00 Finally see GP about these symptoms. He wants me to see neurologist to rule out ALS. Neurologist checks me out, I have blood work done (Thyroid, Lyme, vitamins, etc.) and get a brain MRI to check for MS. No MS. "Strong" reflexes, no weakness = no tests for ALS. Diagnosis was BFS with slight peripheral neuropathy (toes of left foot).
Nov 00 Follow up visit to neurologist: it seems that the pulsing happens less often (usually as a single or a few slow contractions) but recently I have had more tingling sensations. The tingling is mostly around my toes with some tingling on my nose, lips and tongue (for a couple of days) and some in my hands. A couple of weeks after the follow up visit I had twitching in my eye lids for a few weeks then that eventually stopped. I also started to get pains in my legs, feet and arms.
Dec 00 I had a couple of weeks where I had fairly painful left shoulder and upper arm. That subsided. I have noticed tingling mostly in my left arm (lower arm and hand) and left shoulder blade most likely to happen when sitting down or leaning forward. In the last couple of months I had been getting some tingling on my nose but in the last couple of weeks I have noticed (waking from sleep) that I have tingling/vibrations over my whole face. Not much "pulsing" any more but I still get vibrations in my feet (mostly) with some in the back of my thighs and my torso (feels like it's deep inside my torso).
This is where I really start worrying!!
Jan 01 Shoulders (mostly) and hips started to click or snap doing the slightest move or twist. I started to experience pain on the top of my left foot and ankle upon waking in the morning. I've also occasionally had this feeling of something under the arch of my feet when standing or walking along with increased frequency and more painful pains in my feet (predominately left). My right big toe would occasionally feel as if it was "stuck up" when walking. Arms started to feel kind of sluggish and I've started to get pains in my hands.
Feb 01 Started an anti-candida diet along with Nystatin power and caprylic acid. Through all this my weight never varied much but during the first three weeks of the anti-candida diet I lost 13 pounds (167 to 154 (I'm 6'3")) even though I ate as much as I wanted/could. I have since gained a pound or two back since going off the strictest part of the diet. The candida has mostly left my tongue (Nystatin powder!) and that arm rash is finally gone after 7+ years or so! However, I have had a few days where my arms seem somewhat heavy and sore (kind of like the day after exercising even though I haven't). It has diminished somewhat but they still don't feel quite normal (sometimes they feel like they drop the last inch when moving them). I got tightness in my calves and back of upper legs for a week or so but that has mostly diminished. I also have most recently started having this feeling of something stuck in the back of my throat that I find very, very troubling. This will usually happen after eating but not always. It seems that I have been tripping over my words more than normal as well and having a feeling of being short of breath at times and noticing that I am beathing deeply even though I'm not exerting myself.
Questions:
I found this message board when searching for candida info. Oct 15, 2000 Jeffery T stated that he had systemic mold infection and intestinal candida. Can my symptoms be due to candida? EBV? What kind of tests can be done to detemine if one has systemic mold/candida infection?
Frankly, I'm worried this could be ALS. Could these symptoms in my feet and arms be early signs of muscle weakness? What else can cause these problems with my feet and arms, that feeling in my throat and shortness of breath?
In order to get the Nystatin powder I had to have a prescription. Went to a different GP and she gave me that prescription and set up an appointment with a different neurologist when I described my recent symptoms. It's in a month or so. Final symptom: she mentioned that I had a slight lid lag. Should I ask for an EMG and nerve conduction test? Are there other tests that I should I ask for? Does this sound like something other than ALS?
Sorry this was so long. Thank you very much for any info/advice you can give me.
Tom:
My brother is currently in the hospital. He is 38 years old and athletic. His left sholder has recently "shut down" and does not seem to work. He has tingling sensation in the affected arm, and is down to about 25% strength. He was amitted into the hospital 2 days ago due to shortness of breath which has progressively gotten worst in last 6 months. His symptons include all of typical candida symptoms, (twitching(controled when eating strictly protien diet), rashes, hemroids, etc.)
Currentlty he is working with 3 doctors looking at the problem ,(Internist, Nuerologist and Pulmonary Specialist)
Obvoiusly he is worried about the fact that these doctors can't seem to figure out what's causing the problems, and he would apprecite any ideas or recent discoveries you might have uncovered. He would like to talk live if possible, you can e-mail me your e-mail to ***@**** and I will forward over to you his hosptial number.
Hopefully, with comparing information, maybe you both can get closer to a treatment.
Brother's Helper
My brother is currently in the hospital. He is 38 years old and athletic. His left sholder has recently "shut down" and does not seem to work. He has tingling sensation in the affected arm, and is down to about 25% strength. He was amitted into the hospital 2 days ago due to shortness of breath which has progressively gotten worst in last 6 months. His symptons include all of typical candida symptoms, (twitching(controled when eating strictly protien diet), rashes, hemroids, etc.)
Currentlty he is working with 3 doctors looking at the problem ,(Internist, Nuerologist and Pulmonary Specialist)
Obvoiusly he is worried about the fact that these doctors can't seem to figure out what's causing the problems, and he would apprecite any ideas or recent discoveries you might have uncovered. He would like to talk live if possible, you can e-mail me your e-mail to ***@**** and I will forward over to you his hosptial number.
Hopefully, with comparing information, maybe you both can get closer to a treatment.
Brother's Helper
SOB is shortness of breath.
Judy
Judy
Thanks for replying quickly. I don't have any idea why I have had the candida so long. I don't get sick that often but when I do the candida really is noticable. I was tested for HIV in 93 or 94 even though I'm not at all a high risk lifestyle - is that what you meant by other reasons for immune dysfunction?
I don't know my results of my immunological tests. I think I remember something about T-cells being normal. My first neurologist didn't go into much detail other than "everything checks out ok".
Heart is a possibility I hadn't considered. I don't drink very much. I average about one drink per week, maybe a little less.
My GP didn't know what kind of test to check for systemic mold/candida infection either. What type of doctor would know that kind of info?
What is SOB?
Only 3 questions this time!
This forum is a great service. Thank you very much.
I don't know my results of my immunological tests. I think I remember something about T-cells being normal. My first neurologist didn't go into much detail other than "everything checks out ok".
Heart is a possibility I hadn't considered. I don't drink very much. I average about one drink per week, maybe a little less.
My GP didn't know what kind of test to check for systemic mold/candida infection either. What type of doctor would know that kind of info?
What is SOB?
Only 3 questions this time!
This forum is a great service. Thank you very much.
Dear Tom:
Sorry that your having many problems. I can't say much about the infection, this is not my area. It doesn't sound like ALS. ALS consists of motor signs arising from the central and peripheral systems. One see muscle weakness (demonstrated on exam), decreased to lack of reflexes, muscle atrophy, fasciculations and on EMG fibrillations. There are no sensory signs. Your description of the symptoms does not fit with ALS. There are many diseases that can give you SOB and weakness. The most common in our culture is a cardiovascular problem. It is unusual for a healthy person to have a yeast infection for 7 years. What was the results of your immunological testing? Do you drink alot of alcoholic beverages? Could there be other reasons for you immune dysfunction? With the information you gave me, I don't think I can be much help. You will likely undergo a few blood tests and a good neurological exam. Hopefully, they will lead toward the neurologist finding what is causing the problem.
Sincerely,
CCF Neuro MD
Sorry that your having many problems. I can't say much about the infection, this is not my area. It doesn't sound like ALS. ALS consists of motor signs arising from the central and peripheral systems. One see muscle weakness (demonstrated on exam), decreased to lack of reflexes, muscle atrophy, fasciculations and on EMG fibrillations. There are no sensory signs. Your description of the symptoms does not fit with ALS. There are many diseases that can give you SOB and weakness. The most common in our culture is a cardiovascular problem. It is unusual for a healthy person to have a yeast infection for 7 years. What was the results of your immunological testing? Do you drink alot of alcoholic beverages? Could there be other reasons for you immune dysfunction? With the information you gave me, I don't think I can be much help. You will likely undergo a few blood tests and a good neurological exam. Hopefully, they will lead toward the neurologist finding what is causing the problem.
Sincerely,
CCF Neuro MD
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