Twobecomeone
New member
- Joined
- Dec 14, 2024
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- FI
Hi all, really appreciate everyone on this forum. I have been lurking here for a while now and thought to ask your opinion on my situation.
I am a 31y female from Finland, soon to be 32. I have always been healthy and lived a normal, quite active life. Normal weight and no known illnesses or injuries. I work in the Finance sector. I also need to mention here that I am currently pregnant with my first child but please, do not let this affect how you see my symptoms.
My symptoms started mid-October. I started to have tingling and numbness in my face, on both sides and especially around cheeks and lips. At the same time, my legs (more specifically front of my thighs) started to feel sort of tight, stiff and weak. I felt a bit out of balance when walking and the tight/stiff/weak feeling was present in the muscles when walking. I experienced some cramps in my calfs during the nights and also noticed that I had fasciculations across my body but mostly in legs. I was still able to walk 7-5km and work out at the gym - this did, though, cause extreme muscle pain right after the workout and in the next days. I went to a GP at the end of October, he did some preliminary strenght etc. clinical tests and also blood work and urine tests. All normal. The weakness and fasciculations continued and I pushed for a neuro referral since I was afraid it could be MS.
Around mid-November I had my neuro appointment. Same symptoms persisted, also a feeling of being more clumsy in everyday tasks like writing with computer, accidentally bumping on things or banging dishes, some occasions where I stumbled on something but didn’t fall. He did the clinical tests - strenght, reflexes, all of that. He thought everything seemed normal. I told about my worries of MS and he said it didn’t look like that at all but gave me a referral to head MRI just in case.
I felt relieved for a while but then started to have same kind of tight/stiff/weak feeling in my both arms, more specifically in forearms. I also started to have a very fast HR and constant heart palpitations that didn’t calm down. My throat was constantly feeling dry and a bit achy in the morning but I thought it was because of pregnancy. I had the head MRI early Dec and some investigations related to my heart. MRI was clean, no signs of MS or tumors or anything else. Constant ventricular extra beats were identified in EKG and Holter exam but they were told to be benign.
I called the same neuro I saw in November and had another appointment on 11th of Dec. At this point I had of course googled and found ALS. I still had all of the symptoms but started to feel worse on my right side. I told him directly that I worried about ALS and told about the arm weakness and heart issues. He performed again the clinical tests and made me hold my legs and arms in certain statistic positions for a minute - I was able to but right side felt worse and was trembling but the neuro said it went well. He didn’t find anything concerning but gave a referral to CK bloodwork and ENMG to rule out anything. CK was 64 and ENMG was performed by a specialist doctor in neurophysiology. He tested areas in my right leg and arm and told everything was normal, no signs of ALS or anything else. I felt relieved, again. Neuro also called and said there is nothing more we can test and maybe all is just because of pregnancy.
However, after that I started to sleep very poorly, waking up around 4-5am every night and not being able to go back to sleep - it felt like my throat was tight/collapsing and the fasciculations were all over the place, my arms felt numb and weak when waking up. At this point I was not going to the gym anymore, felt too exhausted and thighs and forearms feeling weak all the time - even in daily tasks like walking to the tram stop, walking up/down one set of stairs, doing the laundry or cooking etc. My voice had been a bit hoarse for a week or two and the dryness/soreness of the throat continued. I decided to book an appointment to the only ALS specialist I know we have in Finland even though it was expensive and to be paid by myself.
I had this third neuro appointment (first with the ALS specialist) on 19th of Dec. He saw the notes of my previous visits, MRI, ENMG and I also showed him a list and timeline of my symptoms. He seemed quite frustrated with me and didn’t seem to understand why I was there. However, he performed clinical tests, made me drink warm water while investigating my throat/neck and the swallowing and inspected my body for any atrophy. He said there was nothing, gave me a lecture about fasciculations and ALS mechanic in general but didn’t comment my symptoms. He told me to forget about ALS and move on.
Yet, I am here… during the Christmas I started to feel that swallowing is difficult, there is a feeling of mucus in my throat and nose but I am not feeling otherwise ill. I need to constantly swallow, I cough for no apparent reason and clear my throat all the time. Voice is hoarse and a bit weak, co-workers keep asking me if I am sick. Breathing feels heavy and HR is still up, constant palpitations continue. Thighs and forearms feel even more thight/stiff/weak and even walking 3km feels difficult because of my right thigh (but I can still do it). I try to still keep doing that every day and walk stairs to my apartment (6th floor) but it makes my legs wobbly and feeling even more tight and achy. My forearms are feeling terrible even now holding my phone and writing this - especially the right one. I have also started to feel weak on my index fingers, wrists and ankles in daily activities. I am a rational human and I understand that three neuro appointments and a clean ENMG should mean that I cannot have ALS. But as my arms and legs seem to get worse and there are these swallowing/throat related sensations, I find myself circling back to ALS.
To summarize:
Tight/stiff/weak feeling in arms and legs, especially in front parts of thighs and forearms but also some effects seen in ankles, wrists and fingers - affects daily tasks and walking
Constant fasciculations everywhere, even in the neck/throat area but only rarely in face
Numb feeling in face, mainly cheeks and around the lips
Swallowing issues/constant swallowing, dry or achy feeling throat or feeling of mucus in throat
Hoarse voice, constant clearing of throat and unexplained coughing
Clumsiness in daily tasks - lot of spelling errors when typing with computer or mobile, bumping into things or banging things accidentally, pushing things down
Feeling out of breath, especially when laying down, high HR and constant palpitations
No findings in neurological clinical tests (except both neuros wrote reflexes +/+ or ”semiactive” but didn’t say anything about it), in MRI or ENMG
Normal bloodwork except for a bit elevated leukocytes (due to pregnancy) and when CRP was taken last weekend, it was suddenly 28 without a reason (in original bloodwork back in Oct below 5)
Heart and lungs have been looked at with ultrasound, nothing unusual there
31y old female, no family history of ALS or anything else serious, pregnant at 32 weeks now and all symptoms starting within 2,5-3 months
I am sorry this became such a long story. Any advice what to do next? The GP I originally visited is one of my occupational health care doctors and is very unwilling to investigate anything further since it is all put down into ”probably just due to pregnancy, wait until the baby is born”. Public healthcare isn’t any better, long waiting times and difficult to even have a GP appointment. I am obviously worried because I have still 2 months left of this pregnancy and I am afraid I will get worse - not to mention what happens once my baby is born and if I would have ALS.
I have attached my ENMG from 11th of Dec as reference.
I am a 31y female from Finland, soon to be 32. I have always been healthy and lived a normal, quite active life. Normal weight and no known illnesses or injuries. I work in the Finance sector. I also need to mention here that I am currently pregnant with my first child but please, do not let this affect how you see my symptoms.
My symptoms started mid-October. I started to have tingling and numbness in my face, on both sides and especially around cheeks and lips. At the same time, my legs (more specifically front of my thighs) started to feel sort of tight, stiff and weak. I felt a bit out of balance when walking and the tight/stiff/weak feeling was present in the muscles when walking. I experienced some cramps in my calfs during the nights and also noticed that I had fasciculations across my body but mostly in legs. I was still able to walk 7-5km and work out at the gym - this did, though, cause extreme muscle pain right after the workout and in the next days. I went to a GP at the end of October, he did some preliminary strenght etc. clinical tests and also blood work and urine tests. All normal. The weakness and fasciculations continued and I pushed for a neuro referral since I was afraid it could be MS.
Around mid-November I had my neuro appointment. Same symptoms persisted, also a feeling of being more clumsy in everyday tasks like writing with computer, accidentally bumping on things or banging dishes, some occasions where I stumbled on something but didn’t fall. He did the clinical tests - strenght, reflexes, all of that. He thought everything seemed normal. I told about my worries of MS and he said it didn’t look like that at all but gave me a referral to head MRI just in case.
I felt relieved for a while but then started to have same kind of tight/stiff/weak feeling in my both arms, more specifically in forearms. I also started to have a very fast HR and constant heart palpitations that didn’t calm down. My throat was constantly feeling dry and a bit achy in the morning but I thought it was because of pregnancy. I had the head MRI early Dec and some investigations related to my heart. MRI was clean, no signs of MS or tumors or anything else. Constant ventricular extra beats were identified in EKG and Holter exam but they were told to be benign.
I called the same neuro I saw in November and had another appointment on 11th of Dec. At this point I had of course googled and found ALS. I still had all of the symptoms but started to feel worse on my right side. I told him directly that I worried about ALS and told about the arm weakness and heart issues. He performed again the clinical tests and made me hold my legs and arms in certain statistic positions for a minute - I was able to but right side felt worse and was trembling but the neuro said it went well. He didn’t find anything concerning but gave a referral to CK bloodwork and ENMG to rule out anything. CK was 64 and ENMG was performed by a specialist doctor in neurophysiology. He tested areas in my right leg and arm and told everything was normal, no signs of ALS or anything else. I felt relieved, again. Neuro also called and said there is nothing more we can test and maybe all is just because of pregnancy.
However, after that I started to sleep very poorly, waking up around 4-5am every night and not being able to go back to sleep - it felt like my throat was tight/collapsing and the fasciculations were all over the place, my arms felt numb and weak when waking up. At this point I was not going to the gym anymore, felt too exhausted and thighs and forearms feeling weak all the time - even in daily tasks like walking to the tram stop, walking up/down one set of stairs, doing the laundry or cooking etc. My voice had been a bit hoarse for a week or two and the dryness/soreness of the throat continued. I decided to book an appointment to the only ALS specialist I know we have in Finland even though it was expensive and to be paid by myself.
I had this third neuro appointment (first with the ALS specialist) on 19th of Dec. He saw the notes of my previous visits, MRI, ENMG and I also showed him a list and timeline of my symptoms. He seemed quite frustrated with me and didn’t seem to understand why I was there. However, he performed clinical tests, made me drink warm water while investigating my throat/neck and the swallowing and inspected my body for any atrophy. He said there was nothing, gave me a lecture about fasciculations and ALS mechanic in general but didn’t comment my symptoms. He told me to forget about ALS and move on.
Yet, I am here… during the Christmas I started to feel that swallowing is difficult, there is a feeling of mucus in my throat and nose but I am not feeling otherwise ill. I need to constantly swallow, I cough for no apparent reason and clear my throat all the time. Voice is hoarse and a bit weak, co-workers keep asking me if I am sick. Breathing feels heavy and HR is still up, constant palpitations continue. Thighs and forearms feel even more thight/stiff/weak and even walking 3km feels difficult because of my right thigh (but I can still do it). I try to still keep doing that every day and walk stairs to my apartment (6th floor) but it makes my legs wobbly and feeling even more tight and achy. My forearms are feeling terrible even now holding my phone and writing this - especially the right one. I have also started to feel weak on my index fingers, wrists and ankles in daily activities. I am a rational human and I understand that three neuro appointments and a clean ENMG should mean that I cannot have ALS. But as my arms and legs seem to get worse and there are these swallowing/throat related sensations, I find myself circling back to ALS.
To summarize:
Tight/stiff/weak feeling in arms and legs, especially in front parts of thighs and forearms but also some effects seen in ankles, wrists and fingers - affects daily tasks and walking
Constant fasciculations everywhere, even in the neck/throat area but only rarely in face
Numb feeling in face, mainly cheeks and around the lips
Swallowing issues/constant swallowing, dry or achy feeling throat or feeling of mucus in throat
Hoarse voice, constant clearing of throat and unexplained coughing
Clumsiness in daily tasks - lot of spelling errors when typing with computer or mobile, bumping into things or banging things accidentally, pushing things down
Feeling out of breath, especially when laying down, high HR and constant palpitations
No findings in neurological clinical tests (except both neuros wrote reflexes +/+ or ”semiactive” but didn’t say anything about it), in MRI or ENMG
Normal bloodwork except for a bit elevated leukocytes (due to pregnancy) and when CRP was taken last weekend, it was suddenly 28 without a reason (in original bloodwork back in Oct below 5)
Heart and lungs have been looked at with ultrasound, nothing unusual there
31y old female, no family history of ALS or anything else serious, pregnant at 32 weeks now and all symptoms starting within 2,5-3 months
I am sorry this became such a long story. Any advice what to do next? The GP I originally visited is one of my occupational health care doctors and is very unwilling to investigate anything further since it is all put down into ”probably just due to pregnancy, wait until the baby is born”. Public healthcare isn’t any better, long waiting times and difficult to even have a GP appointment. I am obviously worried because I have still 2 months left of this pregnancy and I am afraid I will get worse - not to mention what happens once my baby is born and if I would have ALS.
I have attached my ENMG from 11th of Dec as reference.
