Newbie: Experiencing Weird Symptoms

Highlights Only
M

mm5252

New member
Hi all,I am new to this forum and want to thank everyone who has posted as I have been lurching for a while.Last January I started experiencing some weird cole sensations in my legs and arms. That soon followed with twitches and fasciculations everywhere, including my chest, back, tongue, throat, face, foot arches. Often times these fasciculations were accompanied by mild pain that would last a few second or so. I went to 2 different neuros, one a general neurologist and one an ALS specialist in June. After an EMG, blood work, and MRI of brain, neck, and back, all of which were clear except for a noted brisk reflex, I was told that I had anxiety and to se a therapist. The ALS doctor mentioned BFS but didn't officially diagnose me with anything.I was doing ok with all this until Monday morning. I was in a wedding, danced, drank, and had no symptoms at all. When I woke up on Monday, the back of my left leg ached, my ankle hurt, my hip hurt, and my tailbone hurt. This also had muscle pain. Today, my leg still hurts and I am scared, not only of potential ALS but of PPMS as well. I should also mention that there have been a few times in the last 10 months where after certain activities my muscle would shake. Some activities were as simple as reclining on my arms while others followed strenuous activities.I am obviously looking for reassurance here. I am the father of two small children and have been crying myself to sleep the past couple of evenings. Anything, anyone could offer would mean a great deal.Thanks,Matt
 
Hi Matt,you say you danced and you had been drunk.Hangover is really one of the provoking issue for BFS flareup :)))taibone, ankle, hip (also spatula, shoulder joint, jaw joints and t-bone are so called trigger points for musculosceletal pains common in BFS and often celled fibromyalgia.As a person haveng that beep for years I may assure you it has nothing with ALS.ALS causes weakness, not pain. At least not in the tailbone :)
 
yep, and plus the fact that pain threshold might be lowererd too due to hyperexcitability of the central brain...I think you may try ibuprofene for 1-2 days (if you do not have countreindications of course)
 
hi matt,im fairly new here myself,but thought i would reply as all this started with cold water sensations too.started 7+months ago,feelings of cold water running down legs and arms at times.twiching started soon after.i havebeen so worried also,had neuro exam who outruled anything serious,mentioned bfs.was doing ok until a few weeks ago left arm feeling weird,achy and stiff........started the worry all over again.im waiting another neuro appointment,could take ages as im in ireland :(yuliasir is one of the best members here and has reassured me numerous times,and what she is saying is true...and what i have to keep telling myself is,the sensory issues we are experiencing is NOT related to **s,i hope your feeling better soon x
 
Bubbles, I was so worried 4 weeks ago I paid to see a Neuro... Im in Northern Ireland... He said everything was ok and that I didn`t need an EMG but I asked for one anyway as my tongue was bothering me... since then I still have the tongue issue but my tricep is going 24/7 for about 4-5 days... Geeez its worrying but I have noticed that when I calm down the general randon twicthes all subside and appear far less frequent!Why hotspots ?? I dont know but its the hot spots that really worry me...Are you in the North Or South ... Just wondering how long it actually takes to see a neuro on the NHS or the healthcare system in the south...
 
hi anxiousim in south ireland,i saw a general neuro in july,waited around 3 months for appointment,hes in dudlin and considered one of the best in ireland.i rang my gp yesterday to say that i would pay this time if it made my app come any quicker! i dont think i could wait another 3 months.its my left arm thats realy bothering me the last 3 weeks,feeling weak and sore with random twitches in forearm,shoulder.honestly i would pay 1000euro to see a neuro tomorrow!
 
I'm Belfast and the one I seen was at the private clinic and they are usually among the best, he is also on the NHS but he said it would take a year to see him if I wasn't private pay ... Well my tricep is going bonkers and sometimes hard to feel but if I look at it its constantly doing it..I looked in the mirror this morning and its pretty big muscle movements but kinda awkward to see when Im not looking in the mirror.If my tongue and tricep would stop I reckon I would be 100% calm...
 
Yes once I visited the GP about the Tongue twitches she said its most likely BFS but as I was so concerned she said she would refer me to see a Neuro and when I asked how long it would take she said months... I then asked her to write the letter and I paid to see one the next day...
 
totally agree burger,when i first went to gp with symptoms,he looked at me all sympathetically and because i had my son a few weeks before said '' ahh your an anxious mum,and your probably stressed'' so i asked him does he get the feelings of water running down his legs??? lol he couldnt answer that so thats why he referred me :) i WAS anxious by all means but i was only anxious because of my sympyoms!!!
 
I feel for anyone getting these symptoms ... We are all in a strange boat for sure but our many symptoms are real, I think for me I started in one place with twitches and my sheer fear and anxiety boosted the symptoms to appear body wide !! I think it's the same for almost everyone here.Once my doc seem my twitch and listened to my story she referred me to a neuro right away to be on the safe side and to help me feel assured in her diagnosis of BFS & she did say I was anxious etc too! I can't believe done of the doctors responses that I read on here, I'm glad my doc was good!
 
I eat pasta or bread almost everyday and a lot of it ..... Geeeez ..... Gotta make changes ! I have been getting 8hours sleep though since this hit me and I think it helps !
 
HI all,I thought I would give you an update. As some of you know my uncle passed from ALS, so this has been quite a challenge in my life.So, my leg pain turned into back and leg pain to extent that I had difficulty raising my knee. I have hot spots all over, with pulse-like spots in my ankle, popcorn like bursts in the knees and elbows, and twitches everywhere else including tongue, back, abdomen, thighs, calves, feet, area between thumb and forefinger wrists, butt, scalp, eye....you name it it was and is moving. Also included in this amalgam of fun were/are muscles shaking when used, pain in my throat, and my chestWent back for my third neuro vist is 18 months. He did all checking...incredibly considerate and thorough....He did an EMG/NCS....I told him to stick the needle in my hot spots all over. He did. Bottom line.....the EMG was totally clean even in the hot spots that were twitching at the time of the test. I have hyperreflexia, but no signs of clinical weakness...He said NO ALS and NO MS....he is rechecking bloods for other things now. He is also going to do a nerve biopsy for small neuropathy.I take some form of over the counter pain relief for my leg and back and that seems to help. I am finally moving out of this fear that has held my joy hostage for over a year. I am a Christian and this has strengthened my faith and that of my family; I attribute much of this good news to God. Having said that, I know the fear well and the tears and wanted to express a solidarity for anyone going through that.My third doctor validated:Sensory feelings lead away from ALS diagnosis. This includes pain.As long as reflexes are consistent on both sides, this also excludes diagnosis.Weakness and clinical weakness are different.I/ we are not crazy.At this point, ALS would almost definitely show up if it happened to be the reason for the pain.He wouldn't give me a BFS diagnosis until all stones had been uncovered but at this point, I am satisfied that MS and ALS are out....Thanks for letting my lurch and for giving me great advice over this time. MattPS. I pray for you all daily....as well as those suffering from any disease.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top