Seeking Support for BFS Symptoms

Hello everyone, I am looking for support and advice. I have benefited from reading many posts, but have never sought help directly from this group. Since having my second child, about 10 months ago, I have had a bunch of very strange symptoms that I hope are BFS. In my forty years, I have never experienced this degree of anxiety and the fixation on the possibility of dying in my life before. I have scoured the internet for answers only to become more fearful and embarrassed about the time I have wasted. I guess I am hoping you can read what my symptoms are and some of the questions. It started out with sensory symptoms, a tingling on my face, pins and needles on my legs, and a sensation like water was going down my arms and there was no water. After a couple of months of that, I got an MRI and they found a tiny lesion on my right frontal lobe. I was told by the neurologist that it was completely benign and that 10-20% of the population gets lesions. The lesion did not look like MS at all. So after coping with that news in August, I got an EMG, though at the time did not have twitches, only sensory stuff. Then two or three weeks after the EMG, I noticed my first twitch on my toe. Since then, all I notice is twitches and no more sensory stuff, except for pain on my toes and fingertips (which scares me because I read some random website the ALS can start with some mild sensory symptoms in these areas). I was told by my neuro that it was BFS, though he did not have an explanation for the invisible sensation I had on my feet of worms crawling under my skin. My twitches, by the way are everywhere, on my arms, legs, abdomen, lip and tongue. I also have frequently felt a strange itching sensation on my upper arms, nose and on the side of my tongue, but there are no skin anomalies. Finally, I have had an intermittent burning sensation on my tongue (this I guess is the only sensory symptom that has remained). In any case,I have noticed that all of these symptoms are worst either in the morning just after waking up, after exercise, during menstruation, and during a virus. I am now on Lexapro and have noticed a slight improvement in the anxiety, but not enough. Today I saw twitches on my tongue and the itching on my upper arms has me scared about bulbar als. There are some days that I have a handle on the anxiety, but others I am a complete mess, like today. I keep thinking that I am going to die and that my kids are too little to see their mother suffer. I could use some perspective. Has anyone had similar symptoms. Does a negative EMG result make any difference when not in the presence of twitching? do als sufferers get itchy sensations on their skin, or bfs sufferers? My neurologist is the head of Boston Medical Center. He is compassionate and has tried to convince me that it is not ALS. He said he would order another EMG, which will take 5 weeks. I would appreciate any information or feedback.

Lilly,I think you're going to get a whole lot of members who are going to tell you that sensory symptoms are extremely common with BFS and not symptomatic at all of <the disease we're all afraid of>. You don't have weakness which is the primary symptom of the disease, and a clean EMG, and a neurologist who doesn't think you have it. I doubt you even need that second EMG, because it will likely show nothing or fasciculations, and you'll still doubt that you're okay.I know exactly where you're coming from. I also have small children, and while I mainly only have twitching, I've been really in the worst state of anxiety since the beginning of this. It's the nature of a) having health anxiety, and b) having scary symptoms (although benign).Hang in there.Mitra

Mitra,Thanks very much. My three year old daughter saw me crying this morning. I feel terrible. It is possible that the whole thing started with the pregnancy. It was very stressful with lots of high risk doctors monitoring me and the baby, who is completely fine. I will take any advice related to managing the anxiety and I welcome perspective on the symptoms. Best,Donna

Hi Donna (sorry for calling you Lilly),It is very possible that pregnancy and the stress and hormones related to it could be the root of this. My neurologist told me anxiety could be related to muscle twitches (although I don't think they know how exactly). Plus, you are undoubtedly exhausted, because you have two small children, namely a 10 month old. Been there!! Exhausting!! You'll see that everyone's symptoms act up more when they are tired.Having two small children myself (3 and 4 1/2), I understand how hard pregnancy and motherhood can be. Plus, I'm an older mom like yourself, having had my first at 38 and my second at 40, and I think it's just a tad harder on our systems to endure pregnancy, all the fears during pregnancy (they scare you to death when you're over 35), and then all the post-partum exhaustion. My back went into spasm when I was pregnant with my little boy and I had to endure physical therapy to get it to some semblance of normal again (although I have low back issues all the time).Before my EMG appointment, I practically had a panic attack in front of my daughter who started crying and asking for help. It was the most horrible thing, and such a bad memory for me. I can't believe I put her through that. I tried to keep my chin up, but it was so hard. We're human, and it happens. Don't beat yourself up over it.I have pretty bad anxiety, but my anxiety has been through the roof since I have had kids. I worry about them constantly.I truly think you're okay. What you'll see on this board is a whole lot of people with terrible anxiety, then muscle twitches (and other symptoms) that drive their anxiety through the roof. You haven't described anything that sounds worrisome to me, in fact you sound like so many other people with your sensory symptoms. The funny one that everyone keeps mentioning is the water sensation... I don't have many sensory symptoms, just some weird buzzing/tingling here and there, but more twitching. Sensory stuff is not a symptom of <you know what> so you can rest easy. Weakness is, and you don't have it.Please hang in there. Send me a private message if you'd like to talk in person. I'd be happy to give you my phone number.Mitra

Lilly-With regards to your symptoms...., you are fine. You don't have ALS, plain as day. With regards to managing anxiety...., accept the TRUTH that your symptoms are benign. Once you have fully accepted it, the sadness and anxiety will fade away. There are plenty of other methods of reducing anxiety (medication included) but this is a very important step.

Thanks so much. I think the reassurance helps and I hope you don't mind if I need to ask again later in the week. I gathered from other posts that the longer you have the symptoms without something scary happening the less you feel anxious. How long has it taken you guys? I am on a med now, but what other things have you done to reduce the anxiety? Also have you found that the meeds can add more symptoms to the picture and increase anxiety? I know this is specific, but do you experience itching? If so, what might cause this?

Time heals all wounds, so yes, over time your anxiety will improve. The time it takes differs for everyone. There are lots of topics on meds so I suggest using the search tool if you want to get a lot of feedback on it.I have been itchy most of my life. Your description of sensory symptoms are consistent with mine to a large degree. Pins and needles I have and had a LOT of. I can't sit still for more than a couple minutes without scratching my nose, face, chest, knee, leg, ear, etc. A lot of this is due to anxiety I'm sure.

Yup, anxiety seems directly correlated to the time gone by with this. I'm 3 1/2 or so months into this and my anxiety is still pretty fresh.Did you get your blood work done? I haven't, but asking. Not to scare you, but itching can sometimes be related to liver function. If you had bloodwork done, then I think it's just sensory.Again, feel free to PM me and I'll give you my number or personal email and you can reach out to me whenever you'd like.Mitra

What kind of bloodwork would need to be done. I had like a complete blood panel. I don't know if that includes a test for liver function.

I'm sure your blood work is fine and would note something funky with your liver if it had been there. I haven't had blood work done, so I thought that that might be a good start for you if you haven't already. You might call your primary and explain the itchiness and get his/her thoughts, but honestly, I don't want you to worry about anything. You really sound so classically one of us, that I hope you can get all of this off your mind.Mitra

Mitra, Thanks so much. I will call! She is so sick of me now, so I am hesitant. I'm super thankful to you for writing and taking the time. I am amazed at how supportive people are. Best,Donna

Anytime! And remember you can always Private Message me if needed, or email me. Did you also see that there's a chat room for us that MommyLondon kindly set up? It's nice to be share our "woes" with each other real-time The link is: I remember how kind everyone was to me when this first started happening to me. My anxiety was through the roof and this was my saving grace, honestly. No one can really relate unless they are also going through it, as much as they try...Mitra

Hi Donna Your symptoms sound very much like mine! Mine began a few months after having my second child. My pregnancy was filled with anxiety over the health of my baby. I have experienced many if not all of your symptoms. I also took Lexapro. 10 mg a day. It took about a month before the medicine kicked in but once it did my symptoms started to slow down greatly and my anxiety went away. Hope you start feeling better soon!

Hi Jen,Thanks a lot for letting me know. It helps to hear from anyone who has similar symptoms.

Probably you had an arachnoid cyst, it's not even a lesion, it's a place where there is no brain . It's just a pocket of cerebrospinal fluid inside the brain, completely harmless and it forms in the womb so you've been having it for a long time, i also have one.

My daughter had that: a choroid plexus cyst. I was very worried about it, because it can be a marker of a trisomy (like down's or trisomy 18) but decided against an amnio.So - I basically joined the choroid plexus cyst forum and was on it about as much as I am on this forum!The doctors weren't worried at all, since she was developing perfectly (and she was born as healthy as can be)., but he did say that many adults have the choroid plexus cyst remain in their heads the rest of their lives, with no effect whatsoever.Mitra

My twitches also started when I was (3 mos) pregnant. This started 10 1/2 yrs ago. I also have 3 brain lesions btw. I twitch like crazy & itch all over (this has been going on for a year) & that bothers me the most actually.