Just joined and fretting

BFS Online Support Group

Moderators: JohnV, Arron, garym

Just joined and fretting

Postby kazar on November 12th, 2003, 6:31 pm

I've been visiting this site as a guest for five months and it has been a great source of comfort and information. I have been twitching in both calves 24/7 since April, with episodes of twitching in other areas that has varied from a few hours to week or so (back, face, tongue etc.,). It all seems to have settled down now but the legs are non stop. I have been to a neuro who did the basic reflex/ strength stuff. He noted that "I have no reflexes", which he didn't seem unduly worried about. I had blood tests which are apparently ok. My symptoms didn't seem to warrant an EMG or MRI, which I took some comfort from at the time I suppose. My concern now is that I lost a lot of weight due to the stress of it all, but I don't seem able to put it back on. I have no weakness, although my thighs ache a lot. I am convinced that I have lost muscle in my thighs (which wouldn't tally with the calves twitching I suppose). Also, I have noticed that my arches have dropped (last month). This on it's own is nothing to worry about, but I'm making (hypochondriac?) connections. I can fluctuate from thinking the worst to hoping for the best in a nano second. It's doing me in!!
kazar
Member
Member
 
Posts: 43
Joined: November 12th, 2003, 5:44 pm
Location: London

Postby Greata on November 12th, 2003, 7:32 pm

Unless the EMG is exceptionally expensive, I would push for it. Although I have occasional freak outs, when I remember my EMG results, it gives me a sense of security. The calmer I am the less I twitch.
Greata
Greata
Senior Member
Senior Member
 
Posts: 54
Joined: September 19th, 2003, 9:16 am
Location: Oregon

Postby Craig on November 12th, 2003, 7:39 pm

Kazar,

I can sympathize with just about everything you're going through...having zero reflexes, the aches in the thighs that never seem to go away, twitching everywhere including the tongue, the weight loss (your weight will come back once you are able to control the stress), etc...

Anyway, hang in there and rest assured that there are plenty of others going through the same thing as you are.

Take care,

Craig
Craig
Selfless giver of time
Selfless giver of time
 
Posts: 115
Joined: August 28th, 2002, 8:43 am

Postby sarahtonin on November 13th, 2003, 4:12 am

Kazar

I too lost lots of weight and am pretty sure it's all down to worry - it is slowly going back on (eating lots of curries :) ). Are you sure your arches have dropped? I thought that too on my right foot but when I spoke to chiro, orthopaedic surgeon, podiatrist about this they said don't be ridiculous look at how your leg is all twisted in, it's obviously been like that for a while!! Sometimes you just notice things more when you're worried about it.

Which neurologist did you see in London?

Sarah
sarahtonin
Senior Member
Senior Member
 
Posts: 91
Joined: October 30th, 2003, 9:23 am
Location: London, UK

Postby kazar on November 13th, 2003, 6:52 am

Thanks for the replies Greata, Craig and Sarah.

I haven't had my feet checked out by a doctor, (I have an appointment with my GP tomorrow, to discuss this and my perceived atrophy in my thighs). I am a teacher and I noticed a few weeks ago that my feet felt funny when I was doing PE barefoot on a concrete floor. I realised that it was because all of my foot was touching the floor. I did the wet footprint thing when I went home and they are definately flat. It could be that they have been like this for a while but I just haven't noticed it before. I'm pretty fixated now though.

My doctor referred me to a neurologist on the NHS in June but because the waitng list was months long, I went private and chose Dr Jestico in East London on the recommendation of work colleagues. He did the routine tests and said that the twitching was "highly unlikely" to be anything sinister. I saw him again in August and he repeated the same tests. Another neuro who happened to pop into the room said that they usually see about one case a year of someone with persistent twitching, and that it usually goes away with reassurance that it is nothing to worry about. He also said that it could be something to do with my "quality of sleep." I went back for the blood test results in October which as I said appear to be ok (it was a different neuro and he didn't elaborate). I mentioned the weight loss and feet then, and he didn't think that either were a cause for alarm. My fears were allayed for a week or so, but they have gradually crept back and I am now in a full-on state of paranoia. I've been pouring over all my photo albums this morning scouring any pictures that show my legs so that I can make comparisons, that's how bad it's got. I don't know what my appointment with the doctor tomorrow will achieve really, because if he says I'm ok, it won't take away the fear that I think I'm not.
kazar
Member
Member
 
Posts: 43
Joined: November 12th, 2003, 5:44 pm
Location: London

Postby Pole on November 13th, 2003, 7:47 am

Hello Kazar

Reading your story I fell like I would read my own one. I also started twitching in April this year. My twitches also started in calves and now they are all over my body. Calves are still most active but other areas (arms, back, thights, abdomen) also twitch a lot.

I also visited few neuros and they told me that's something benign. I had an EMG in late may - fortunetelly normal. Despite of no progression and normal EMG I'm still afraid of ALS, but now I am MUCH calmer than in the begining. I was on antidepresants from May to August and it helped me a lot. I used to have a paranoia too but now I'm just mad about it :) Just joking, the truth is that time will help you to learn live with this (and after 10 years you will be sure that's not ALS :)

BTW, if you really have no reflexes your neuro should investigate why, because it's a pathology. I think that he said that you didn't have HYPER reflexes (which can be seen in ALS).

regards
Marcin
User avatar
Pole
Hero
Hero
 
Posts: 472
Joined: June 12th, 2003, 12:56 am
Location: Warsaw, Poland

Postby garym on November 13th, 2003, 11:39 pm

Your story is mine as well. Lost weight that is coming back as anxiety diminishes, perceived atrophy, searching old photos......I done/thought the exact same things. The best advice I can give is to start living like you have a reason to live. I was living like I was going to die, paying off bills, not buying anything so that my wife/child wouldn't be strapped with debt. Just this past week, I made a descision to start buying again, with the plan to live/work long enough to pay things off.

Probably doesn't make a lot of sense, but when I told my wife that it was a big step to make a large purchase because I was over the fear of iminent death, I think she realized the depth of my fear. Also the progress I'm making to get over it.

Good luck to you,
Gary
garym
Moderator
Moderator
 
Posts: 1889
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby kazar on November 14th, 2003, 4:58 pm

Thanks for all the replies. I had my appointment today. My doctor examined my feet and told me that they are not flat !! He put his fingers under both arches and said that although they were not perfect, they certainly hadn't dropped, When I asked him why they feel flat to me, he said "Because you think they are." Sure enough, I've been walking around my flat tonight and they (almost) feel "normal." Talk about the power of the mind....He looked at my thighs and said there was no sign of atrophy. He suggested that I do some quad work if I'm concerned. I used to be very fit and ran a lot (until the fear of all this got a hold, about July), so I may start going to the gym again. Also, I'm 45, muscles start to go a bit if left to their own devices I suppose. I told him about this site and how it has been a great source of support, and that I thought that more research should be done into the condition. I would never have had the confidence to say something like that without the knowledge and understanding that has been generated here. A big thanks to you all.
I'm feeling quite positive, but am aware this may be shortlived, particularly when I read about people who have had "clean EMG's" (which I haven't had). Here's to a worry free weekend (is there such a thing?...)

Karen
kazar
Member
Member
 
Posts: 43
Joined: November 12th, 2003, 5:44 pm
Location: London

Hello

Postby twitching man on November 15th, 2003, 1:10 pm

I also was having a strnge sensation on the bottom of my feet. We have hard wood flores in our house and we have had them for a long time with no problems walking around on them, then one day it felt like all of the muscle in my feet was gone, I would walk on the floors barefooted and then he botom of my feet were very uncompfortable. I did then same thing went to my docter and my rheumathologists and they both looked at my like I have los it. Anyways that feeling has gone away, I think all the twitching and crams in my feet temporarilly weakened my muscles because they don't hurt anymore when I walk barefooted. I was also just like all of you this has been a life changing experience for me and I relize now how vulnerable we are to anything. I know live my life day to day with an eye on the future. I just like Gary wasn't making any buyiny decisions also worried about my wife and kids. after going through this I have totally changed my outlook I went out last week and bought myself a new truck, next will be an RV so we as a family will live like a family and try to enjoy every moment we have which I plan for that to be decades. I won't be as tight with money as I used too, I won't be thinking about my next investment before God, my family and my friends. It is time to enjoy life with everything we have everyday because tomorrow is gauranteed to no man. Sorry rambling on about my new outlook but it feels good to reinforce it. I also went out and got a million dollar life insurance policy on myself and did my living trust so I do feel alot better knowing my family is taken care of.
twitching man
Senior Member
Senior Member
 
Posts: 71
Joined: September 10th, 2003, 9:48 am
Location: Orange County, CA

Hello

Postby kazar on November 16th, 2003, 12:34 pm

It's weird about the feet isn't it? I bought some slippers yesterday to take my mind off them when walking around my flat, (I too have wooden floors).

I am still feeling positive today. It's been great these last couple of days, being able to get on with things and even have some "space" in my head instead of constantly going around in circles of worrying, analysing, panicking and then trying to pull myself together. I hope this will last, but I don't have a great track record over the last 7 months.

The twitching in my calves has not been as noticable today. It is always there when I look, but I don't always feel it. I've had a few isolated "thumpers" in my arms and body, but I'm used to those now. I have started taking magnesium and B12 this weekend, so we'll see if this makes any difference.

Karen
kazar
Member
Member
 
Posts: 43
Joined: November 12th, 2003, 5:44 pm
Location: London

Hello

Sponsor

Sponsor
 


Return to The Support Group

Who is online

Users browsing this forum: No registered users and 5 guests