Jerry2 update: it's 8 months: not doing well but still alive

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Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on May 31st, 2012, 6:36 am

Hi all

As I have had too many problems and all I do is moan on this forum I decided to stay away from it for a while. One of the members sent me a PM today asking about me. I find it can be worrying to other members if one member just dissapears. In fact most return when they have something good to tell like how it is better, but I don't have such news unfortunately. If somebody want to stop reading here, I'll just tell in one sentance: I am still undiagnosed and I am still alive and in pain, twitching and all the other stuff. Now the long version for who want's to read.

It will be 8 months tommorow when it all began with twitching, my hands were shaking in the night even before that. It is 7 months since my neuro exam. I am still testing for babinsky and some other signs I can test myself and I find no change. As my neuro scared a lot of me, I decided not to go to a neuro if I don't have some objective thing to show, like something localised, some atrophy, weakness, persistent numbness that doesn't go away etc.

Instead I joing the Art of Living class and made the first and second class, totaling of over 45 hours of joga in 2 weeks. I think I really started to change mentaly of my view of the problems in relationship, work etc. I did the joga breathing (sudan shankriya) but I got half body numb from it and I have enough of this sensations without this technique. For me, the computer guy, this is hyperventilating, although they say different. What I benefited from is the mediation, the joga stretching excersises and the ideology that I have to let fear go. It is a slow move but for the better. Things that upset me in the past do not upset me now. The only thing I have no success is the health anxiety. I am still scared as hell what is going on with my body, my mind is better but my body is not. Deep insode I would be lying if I don't still fear ALS, I think I'll fear this terrible disease for the rest of my life as I can get it anytime in the future. But the 8 month period helped me ease a little of ALS. Although I now have some percepted weakness in one leg I think this is because I feel this leg a little less (sensory problem) because I have no real weakness when walking. At least all say, if I have real weakness I would know. Now I am guessing it, so it is no real weakness I guess. Unfortunately only my ALS scare is deminishing by the month that they pass. The disease that is hunting me is just blurring it's name, not the scare :-( I still fell many times I am just slowly dying off, as the problem widespread. The exercises I am doing for 2 month now really do not help, it is going it's own way.

Some symptoms are the same, some have evolved, some have almost dissapeared but came back. To sum my problems in no particular order:

1. Fasciculations (first in line because I am on BFS forum ;-)) - It's not like 24/7 in all the muscles and some days are better than the others, but they are there everyday in my left foot arch and moving around the body. I have a few days hotsport almost every day, few days in belly, few days in leg, few days in arm, I've had eardrum twitches etc... And I have the random one time ones, I don't count them... The hotspots move definitely, just the left foot stays, other do move.

2. PAIN - I guess the most crippling problem, mainly in the feet / ankles and hands :-( Right feet is mostly affected by nerve and muscle and tendon pain of some kind, the shoe feels like it is too small, but it is my feet that makes this sensation as the skin is so sensitive (nerve pain I guess). Since my ankle pain started I can not run any longer, but I can stil walk more or less normally for 1-1.5 hours if the shoe is very wide, but then the big toe muscle starts to hurt. Pain seems to be the worst in the morning and in the evening and when I am stretched it is a little better. Whatever I do the pain is no better.

I have managed somehow to subside the wrist pain but yeasterday it came back in full power so I can harly flex my wrist down :-( The index finger I was having tendon problems is better now, but the left thumb MCP joint is very bad. Togethwer with left wrist my hand is quite bad. Some other pain comes and goes in muscles, tendons and joints and stays there for some time and then it is better.

3. Wierd nerve sensations - Last month I have more and more of this, not in my foot and hands any more but in the legs as well. For example, I got buzzing feeling in my right instep for 14 days, then it stopped. I got left ankle buzz for 7 days and since 3 days ago I have buzzing just below my knee in the left leg. In fact, the buzzing is spreading, I have some buzzes/tingles all over my body even my lips or my face. This symptom is getting worse :-( Luckily the "Morton Neuroma" kind of symptoms in my left foot when all this started (severe burning in the soles, picking like needles) didn't return, but the new thing is nerve pain in my legs. Few days ago I was lying in bed and got so severe needle like pain very sharp every 10 seconds I thought I will ge insane). All the other pain is when I move only, this nerve kind of stabbing pain doesn't care if I move or not :-( Anybody else know this kind of pain?

4. Night symptoms are not better, they are changing on weekly bases, circuling between few types: - one type is I wake around 5 AM to find one or both hands or arms or both in tremor as you remember I've had this problem. - the other type is I wake up ok, but as soon as I move my armes the tingling comes and sometimes the shaking of the hands, it seems connecting to tingling. Twitching accompanies or not. It moves, sometimes it affets whole hand or both hands, median side or ulnar nerve side. There is no pattern, but mostly thumb is involved in trembling. Today for example I woke up fine, moved the hands and my left thumb started SHAKING, TINGLING and TWITCHING at the same time. This kind of things make my mind go uneasy to say the least. This night tingling, tremor, buzzing is only in my hands and arms. WHen I get up it mostly dissapear, some days I have wierd feelings in my hands for whole day, sometimes I would like to write something and my hand starts having tremor for 10 seconds and then stops... I have had less total hand/arn numbness than in the past at night.

The most wierd thing that happened to me is that a few times I got awake but still sleepy. I could feel my nerve tingling from one hand to the other going through neck, like they were connected. At the same time my thumb and whole hand had tremor. After some time lying so it happened like somebody made a switch to OFF position. The buzz and the tremble stopped in an instant. Five seconds later it started again like the switch would be to on again. I know I sound crazy, but it is the truth. I feel crazy sometimes. This is all illogical. The night symptoms never involve my legs and feet although when I go out of bed I usually have some numbness in hells and soles. My soles hurt many times, whole feet hurt.

I did have a phisiotherapy exam, 1 hour lasting. The doctor tole me he absolutely sees no evidence that I could have strained ankle or anything wrong with my foot and foot muscles. Whatever this is he said, is generalized, so he didn't put me on laser or ultrasound therapy, because he thinks the pain is not coming from the foot at all :-((

I have done B12, Calcium, Magnesium, Pottasium tests (for the first time) and I can stop eating this things as I have everything in the middle of normal. I checked for Creatin Kinase and some other protein found when muscle cells are falling apart and it is normal. As 50-70% of ALS patients have elevated CK this was also one of the reliefs that my muscles are just acting bad, not actually dissolving.

I gave up and went to the lyme test although I never had any tick that I would remember. We are in a highly lyme disease country and I can not be 100% that I didn't get it somehow. I stil think I don't have lyme, but the test will come back in 14 days and I'll know for sure (symproms are simmular to late lyme disease that is why I am doing the test).

I am stil coping with pain and twitching and wierd buzzing/tingling/numbness on a daily base, I just don't talk much about it and try not to think about it. Sometimes it is very hard to stay positive if I only see a decline in symptoms no matter what I do (my other hand has now one hurtfull joint also etc.).

I just see that nobody on earth know what that is, it is like I am on some evil spell. It is just I don't belive in this kind of things. My mind is better, but my body is not and that makes me less on ease. If this would be a "mind problem" it should be better...

It is almost summer now, I'll be able to wear slippers which will ease my preassure of shoes in foot nerve pain, I'll go to the coast for 14 days and swim (I can still do that!) and I hope one day I can come back and told you I am better and what helped me. I am sorry I don't have some good news, but as I learnes in joga, I still AM. The graveyerds are full of those who would take my place. And I guess I can count a positive sign that I am not experiencing any real weakness at this moment, except weakness because of pain which is not "real" weakness. My left hand still looks same "atrophied" as my neuro saw it and I guess if I would be dead by this, 8 months is a long time and I am still alive. The tingling/butting feelings and twitching makes me a feeling I can not control my body and the pain in my extremities is to cry, but I am alive.

Just wanted to let you all know. Thank you if you managed to here, I am known for my long letters ;-) And thank you for you PM of your care for me. I hope some of you are doing better and I hope nobody is doing much worse ;-)

Take care

Jerry

PS - I found out during excersises some more wierd things: When I move my head to front, like the neck extend forward (not bend!) my left eyebrow twitches. Every time! I thought maybe something is wrong in my neck but I learned the facial nerve doesn't go through neck :-(
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby volfan on May 31st, 2012, 7:43 am

Jerry, I know this does not change a single thing you are experiencing but I will tell, as others will I am sure, I have and do feel everything you describe. Even to the waking up with fingers, hands, and for me toes tremoring (actually for me there are times when those parts are violently shaking). I feel like an alien has invaded my body. There are times he plays pretty nice and the symptoms are noticeable but not to the point where I am beside myself over them. Then there are days when the buzzing is so non-stop it drives me nuts. Or the tremors occur frequently enough that my concentration on work or family is really difficult. Or the twitching is like popcorn and shows here, there, and everywhere and I play my mental game of where will you show up next. The various symptoms and ways they can present themselves with BFS - or whatever we want to call it just let's not EVEN call it something bad - are down right fascinating. Just when you think you know a condition it can morph into something just different enough that it makes us think "oh dear...this is different. That has to be bad". Well, I think the only way to get through this crap is just to remind ourselves it is just different and that is all. For better or worse, WE are different than most people because we have this little gift that keeps on giving. Having said that, I have always liked being different so I should be perfectly OK with all this. In fact, one of my favorite t-shirts of all time said "Normal people scare me". :) Keep on the sunny side, Jerry! Vicki
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 11th, 2012, 10:31 am

I had a wierd thing 2 days ago.

I got a terrible nerve pain in my teeth in the left upper side. I thought I have a root canal inflamation :-( In 2 hours the pain got worse and went behind my eyes. I got very nauseated at the same time, didn't know if I will have diahhroea or throw up :-( I did have some colon problems the next hour and I took paracetamol for the pain. In 2 hours it was better and I felt very tired, like after some seizure. I was lying all the time douring this and it never happened to me before, I thought I will die that day. And it was not panic attack, because I didn't have any problems breathing etc. I had a terrible headacke and nausea.

Can this be caused by BFS, can this be some epilepsy or migraine? I didn't have any aura with it and I don't have migraines :-(

Now something else. When I got headache and nausea my hip hotspot started twitching like crazy, I mean 5 strong times a second. Very strong. I didn't care at the time I was feeling so bad, but I am wondering, can this neuro stuff cause this? Or even a better question: Of course I started to get quite nervous with the headache and feeling generally ill by the minute. Can the twitching be indeed from the stressd, I mean side effect of not being well? I mean that would support a little the theory that my nerves are overactive. First I thought twitching made all this but I am not sure if it was something else and the increased twitching was the side effect only.

Yours

Jerry
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 11th, 2012, 11:33 am

Hi jerry,
There is very little chance that it was epilepsy (there is very specific type of epilepsy episodes without seizures, and this is called 'petit mal' and usually those episodes are not noticed by the vitim - only by those who watch them outside). And everybody who has migraines had them once in a first time. it looks much like a migraine attack for me because you had a pain behind the eye and you had a nausea and felt completely exhausted at the end of the episode. Those three items fit into migraine list perfectly.

I personally was nauseous at the mirgaine attack only once in my life but I know people who throw off every time they have a migraine attack.
Then you should know that not all migrains have aura (only about 25% of them), and that the pain in your thooth might be either a kind of aura or a trigger.

looks like migraines and BFS are related too because for the last few days I saw many people here complaining on various types of migraines or migraine-like conditions - from TIAs and ophtalmic migraines (flashing spots in the eye) to classic hemicrania with nausea. Pain can increase twitches for sure.

Migraine is very striking condition, especially in the form like you describe. So I believe it would be better to complain to the doctors and ask for specific meds (migraine is known to be resistant to most of OTC painkillers and need rather specific triptane based meds or anitseizure course like gabapentine).

wish you recover as soon as possbile

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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 11th, 2012, 11:46 am

Thank you for your thought. Yes, there is a first time for everything. It kind of scared me, because I didn't know if I am dying or having some attack or something. The tooth there seems to be fine, it was 2 years since the filling was changed and now I don't have this pain any more. But it sure started as severe nerve tootache (dull, preassure like pain not stabbing pain like if you have a hole in the tooth). This ws some kind of a trigger I guess. The twitching then was much worse, the hotspot in hips got crazy for hours. I didn't know should I sit or lay down or what. I found sitting more confortable than lying down, the pain was less when I sitted.

Isn't TIA a kind of brain stroke? At some point I got also scared it is some brain stroke or heart attack. I mean, strokes have numbness, I do have it all the time somewhere... Hard to tell what is what. I just felt so bad I thought I will die that day (that kind of perception at least), I barely got home from a supermarket.

Thank you again.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 11th, 2012, 12:01 pm

TIA is transient ishcemic attack, and for example my dauhter has rather tias than classic mirgaine however she has strong auras and becames half blind for affected eye (holy god it was so scary to see her saying 'I know there is our doggy here but I do not see him'...) and relatively mild pains and no nausea. TIA not always means a stroke or evem mini-stroke, the issue is they are waning before the brain tissue becames damaged. After the stroke the numbness is constant and never goes away or goes away so slowly, most probably you have either sensory or mild circulatory issues in your limbs.
Stroke is always quite disabling, even properly attended and treated.

What I would suggest is to take about a week of two times per day BP meaurements, if you have that device at your hand. if it always good to check if you have elevated blood pressure or not, and neuros usually appreciate such self-control in case of complains for headache with nausea or other migraine like conditions.

It is so sad to hear about your episode - they are really exhausting to the point. Some people have to take about a week of less activity to recover from one 'good' full size migraine. take care about yourself please.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 11th, 2012, 12:09 pm

Well, mine was quite short if it was that. And you do remembered me of something important I forgot to mention. In the middle of the shrisis I went to measure BP yes, I have quite a good machine at home. I am usually around 115/75 or something, I had 132/90. I know this is not high preassure to do me such an episode, but it was elevated for me. After few hours when I was feeling better it dopped down again.

Yes, I do have every night hand tingling, numbness or pain or tremor or twitching in my arms, something from above. And not the first half of the night, but the second, morning half (wierd!). No my nerve problems are fluctuating from bad to worse and back to bad, including twitching, paresthesia, buzzing in legs, pain in feet and hands etc... :-( It is fluctuating to a point that I can not decide what limb to do EMG on and as the doctors only make me nervous and in fact the neuro did scare me of atrophy and couldn't say I don't have ALS I rather suffer without them until I get some *real* weakness I can show for sure.

:-( So I thought with this "attack" that this was the final chapter in thiswhat is happening to me.

My father collapsed once and the told him he had a TIA and that TIA is a mild brain stroke, so I thought TIA is stroke or preceedes one.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 11th, 2012, 12:28 pm

having morning issues might be a sign of anxiety disorder because certain neuro mediators release at that hours causing what is called 'dolor ignis ante lucem' - severe dawn spleen, so to say, and it is not always a bad feeling in your soul - it could be somatic attack like you describe. usually for me it happens between 3 and 5 am and when I was an office worker it added me a sleeples snight. I was very surprised to learn it is a clear sign of GAD for my neuro...

some blood pressure elevation is common for migraine attacks and typically to have a risk of hemorrage stroke you might have it about 200 or so...

Not always TIA is a mild stroke, we everybody can have tranisent ishemias related to LOW pressure (like pregnant women especially), I remember I was collapsing few times in my childhood and youngster times just because I had brain ishemia due to very low blood pressure, in the matter of stroke many things depend on wheter a part of brain was lacking blood supply up to the point of damage or not. Every such episode is a transient attack, the matter is whether the brain can compensate it almost to a 'nothing had happened', or there is some residual damage.

regarding waht limb to submit to EMG I can tell that for some reasons (I do not know how it is explained) the doctors often do not need to test all your body. I was complaining for legs, eye and thenar twitichng and for the needle part of excersice the doctor took only thenar because eye and calves are very common and non-indicative. so most probably they would test your upper limb - and it might be twitcing at the moment or not, do not worry. if ther is something to pick up, it would be picked up. if nothing to pick up, it would be clear too.

Try to relax as much as you can, and yu'd be better. You need this now.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 11th, 2012, 4:45 pm

That is really interesting things you are telling me. My neuro didn't know what could cause the wierd hand tremor at morning (when I am fully awake it subsides and dissapears it seems to come when my conciusness is not clear), he told me it may be clonus, but I don't think this is clonus. Now I have tremor or tingling or wierd feeling in arms and hands especially, can not describe it. If I wake at 3AM I am ok, I usually have problem with early morning waking and can not sleep any more. If I can I get this episodes of neuro problems in my hands. When I wake up I am restless and my fett are little numb, hands are wierd etc. I feel better in the evening than in the morning.

Now linking that to anxiety disorder is what my psychiatrist told me, but I didn't believe anxiety could make me such mess every night :-( Seemed to neuro and too powerfull for anxiety.

Same thing I now found out is when I am tired (not sleeping at night enough) and I fall asleep for a nap up to 1 hour (I know, that is not a nap any more). Same thing happens. So it is early morning or taking a nap in the afternoon. Something is different then that the first 5 hours of night sleep. If I found out what is causing my hand tremor/tingling/wierd feelings at night I would know what is wrong with me, because this seems to be a symptom that neurologist are puzzled. I studied a book about neurology also and it seems that early morning hand shivering is not a symptom of anything... Wierd...

Some night I have some hand buzzing from one hand over the neck to the other hand. Same time my thumbs and other fingers can have tremor. At one moment that I am awake the buzzing stops and the tremor also, like there would be an off switch in my brain. 5 seconds later both is back. Now this is really so wierd for me if somebody would told me that I would think he/she is crazy totaly :-( My symptoms are too wierd to go to the doctor any more :-(

I got lyme test back, it is negative as I predicted.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 12th, 2012, 12:12 am

What I know from the book of neurological papers I had to translate last year, is 1) that sleep disorders and neurological conditions are closely related, and practically they are common for example for PD, stroke etc - but I think, any other neurological condition could be mentioned too, and things like narcolepsy (involuntary falling asleep at the daytime, also assosiated with weird loss of motor control at strong emotions), or nightwalking, are considered as part of neurology field too. 2) that there are sleep disorders, often related to anxiety, which make people awaken with not fully brain control 'on'. most known result of such messed control is sleeping paralysis - when you are fully conscious but your motor funtction is still of like in the deep sleep - so person sufferning from that has no ability to move, has breathing issues and this is exhausting. My dauter has quite obvious anxiety disorder and she reports all that saff - migraines and sleeping paralyses, especially when her stress level is raised. beause you fell better when fully awake, I may only guess that you awake in the similar state, when your brain due to natural but distorted control mechanism can not properly control your motor functions, causing tremors and weird sensations. I have not read in this book about tremoring as a symptom of sleeping disorders with lost motor control, but I think it may be related to that bunch of conditions.
generally anxiety - if that is a disorder and not just episode - changes the chemistry of the body quite significantly. So it could be every day and night symptoms and they may last for long time.

sleep disturbances might be caused by antianxiety medication (it is weird but reported), so if you are taking something like SSRI, you might ask your phsychiatrist if it is possible.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 12th, 2012, 12:18 am

Yes I have the oposite of sleep paralysis, I have tremor when I wake up but even before, because I sllep my hands shake and I wake up and they do. The did before that is why I dreamed about it.

I read that early morning insomnia is anxiety related also. Wierd is, when I wake up I have more pain in my feet and hands and more tingling etc. than at the evening, like the sleeping would harm me in a way. I find no explanation to this but I feel that what day heals, night takes away, so I do not get better. Unfortunately I can not be awake for 7 days to heal ;-)
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby Yuliasir on June 12th, 2012, 2:13 am

jerry2 wrote:Yes I have the oposite of sleep paralysis, I have tremor when I wake up but even before, because I sllep my hands shake and I wake up and they do. The did before that is why I dreamed about it.

I read that early morning insomnia is anxiety related also. Wierd is, when I wake up I have more pain in my feet and hands and more tingling etc. than at the evening, like the sleeping would harm me in a way. I find no explanation to this but I feel that what day heals, night takes away, so I do not get better. Unfortunately I can not be awake for 7 days to heal ;-)



that probably might mean some phases of your sleep are really distorted. You might have more muscle activity when sleeping than it should be, or lack that deep myorelaxation phase so awakening harms you.

there is a study called somnography (i know some of our colleagues here underwent it) to clear if everything is Ok with your sleeping mode (it is taken in the hospital where patient has to sleep for night or two under EEG and other monitoring) so if that is really disturbing you up to the lack of rest, you might ask for that. Most cases of sleep disturbances are quite curable, it is just necessary to see which phase is damaged.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby jerry2 on June 12th, 2012, 2:27 am

Thank you for your thought. Yes, I do feel strongly some of my sllep phases are severely disturbed and that this may cause some of my problems. I believe it is the early morning phase, the dreaming phase. I don't relax at night I get tense and muscle aches and nerve problems like tingling over the limbs.

I have already found institute here that does the sleep study, mostly for apnea, although I don't believe I have apnea as my wife says I rarely snore.

I also have too vivid dreams mostly, more than normal time nightmares (not night terrors, just bad vivid dreams) and from such vivid dreams I wake up restless, like I was really there.

This theory is all good but taking a nap makes my hands go wrong is against it, in afternoon nap I don't think you have all the sllep phases. If you have dream one, than perhaps. I do hovewer unfortunately believe that most neurological diseases are not curable and that neurology is the part of health science doctors really can not do much. I mean, we don't even know why we need to sleep, don't we? I know they can "treat" aplen with a mask, but if you have vivid dreams with no medications, I don't think they can help you.

But yes, I'd like to come to sleep study, because I do think maybe there is something visible what happens to me when I sleep on EEG, EKG... I don't believe they will be able to treat me, but at least they will be maybe albe to see everything is not ok and I am not just a hypohondric.
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby marbito11 on June 17th, 2012, 9:36 am

my fingers, hands, and legs do twitch and tremor when i wake up.....it happens on occasion and goes away when i wake up.....iam scared about parkinson
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Re: Jerry2 update: it's 8 months: not doing well but still alive

Postby marbito11 on June 17th, 2012, 9:44 am

also i do tend to wake up early and yes my soles of my foot do tingle......youre no the only one with this.however, it seems mine are more mild....if get diagnosed, feel free to email me at
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Re: Jerry2 update: it's 8 months: not doing well but still alive

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