symptoms for just over 3 months -had brain/spine scan, E.M.G and NCS. I am still awaiting results from consultant but the doc who did EMG said there was no evidence of MND or nerve damage apart from my carpal tunnel. Thinking maybe PNH/BFS but when I asked if this could cause my throat symptoms and weakness he said not. I had PNH 10 years ago for 3 years, then clear until now- didn't bother me once I knew what it was but felt very different to what I am now experiencing but I think my history is adding to Dr's opinion.
I requested anti depressants when my symptoms first began as I was very worried about ALS. So some bits of symptoms could be side effects. I am quite calm about things now so isn't the cause. Convinced finally that not ALS by people on forum as ALS wouldn't be affecting so many areas so early on, Dr's comment on EMG (would have shown up Lower motor neuron damage), and even tho my sensory symptoms are minimal this wouldn't be in ALS.
Present symptoms are:
Fascics - jerks(? myoclonus - ?tablets),fluttering,up and down movements I can see and feel, or shallow rippling under the skin - can sometimes feel if leg in certain position and can sometimes be seen. Lots of rippling in sole of foot makes toes move side to side. Have days where don't notice much twitching. Areas that I have noticed twitches - left arm, left leg, right ankle area, left foot, left buttock and groin, throat,neck, tongue, face(especially jaw/chin area), left eye (had twitchy eye in past but seems to happen bit more often)
Have slight tremor in hands , which seems to be getting worse (?tablets).
Cramps - lots of areas - can be very short lived, or can continue for ages leaving the area very achy - both legs and feet, both arms and hands, buttocks (all these more so in left), tongue, throat, jaw, cheeks, roof of mouth.
Feeling of stiffness in hands and toes
Swallowing liquids feels odd - can do it but get lots of wind, feels gurgly and as if wants to come back. Throat stings sometimes.
Speech beginning to feel slightly affected - tripping on tongue
Biting tongue and inside cheeks as I speak and I think when I sleep - mouth full of ulcers
Cough feels shallower -
Chewing feels slightly affected - notice if chewing raw veg/nuts - take ages.
Sensory symptoms - very minor - had some numbness and tingling in left hand and foot initially but not so much now - if I do seems to be after lots of cramp in that area .Bits of tingling - short lasting and not often - eg fingers
Mild burning sensations - various areas - across top of back, limbs.
Joints feel vulnerable - especially knees, elbows, ankles. May have bits of arthritis that could complicate this but not aware of this before except in right knee. Hear lots of clicking in joints - especially right ankle.
Weakness - left hand feels slightly weakened and clumsy - drop things and hurts in hand and arm when pick up objects e.g. mug of tea. Hand sometimes feels tender to touch. Left foot feels as if not holding me steady e.g. when getting dressed and lifting up right leg. Feel my walking slightly odd to balance myself.
Muscles feel softer and wonder if signs of atrophy - behind left knee, left arm and hand, face looks a bit droopier than normal, my left buttock feels uncomfortable when sitting and sole of left foot sore on standing - wonder if atrophy - buttock looks a bit saggy.
Did wonder about CIDP but apparently would have shown on EMG??
Really appreciate anyone responding. Sorry so long but didn't want to miss anything out.
I dont know what PNH is but I have PN and alot of your symptoms are very similar to mine I have the flutterings at left side of left breast and left side of groin where leg meets groin on some days but not every day. Have the stiffness cramping and sore areas in feet mostly and sometimes hands, lots of cramps in hands if I try to use them to grip or twist off something like a lid. cant say I have the mouth symptoms you have.
There are pings stabbing feelings, cramping, and general soreness feelings in soles of feet.
Weakness is definatly there, I had a physio functional testing that lasted more then half a day and being 45 I think at the time I was told I had the strengths and range of movements (ROM) of an 80 yr old lady. That is scary. And you cant see the gauges they use so there is no faking it when they retest several times during the day. It is what it is when it is all said and done.
I have had lots of little tremours but here and there, no specific areas on a continual basis, the other day my thumb was jumping like it never has before and have seen a spot on leg for example doing a seriuos jumping act, not like the ones you see normally in most people. These are really visual like something trying to get out of the skin.
Burning for me is usually on bottoms of feet and ankles. Feet feel like I ran over coals and wont stop burning and ankles feel like a hot rubber band is around them and should be let go but wont go away sometimes for hours or even a day or two at a time.
I was on anti depressants and pain pills but they seemed to do so little that I decided to live with the pains rather then destroy my liver or something else for what little they did over time and you cant just take them for break away pain, they must be there all of the time and yet the results is just the edge being taken off and the embarrasing stabs that show up while in public seem to still happen. They make me jump and even blurt out an OUCH infront of unsuspecting strangers who think they stepped on my toes by accident. Those are the worst of all my symptoms to me, the general daily pains I can deal with altho I wish I didnt have to but working at home now makes it easy to go put a leg up when I need to so that is an improvemnt in my life.
Anyway that is PN in my life, so hope it helps you understand more and maybe get some answers soon about what you have. Let me know what you find out when you do.
PNH is Peripheral Nerve Hyperexcitability which is sometimes called Benign Fasciculation Syndrome. Sorry for use of abbreviations! Presume PN= peripheral neuropathy. Had wondered about it but doc doing EMG said it didn't show any nerve damage - not had proper feedback after proper analysis of results. PNH doesn't cause weakness or swallowing difficulties.
Did yours show up on EMG?
My sensory symptoms are very mild even the burning isn't really painful - I'm just aware of it. That makes me think probably not PN?Wondering if it is starting off mild then may get worse? Did your sensory symptoms do that or were they full on straight away? Don't have ongoing pins and needles/numbness like many with PN have - have had hints of it then goes away - foot and hand.
Hope you find some comfort and relief from your pains.
Hi Jeanie, no mine started off I think when I was much younger with odd cramping, didnt realize it then tho cos I just figured it was normal to have a foot cramp in a shoe now and then. I remember having cramps as a teen that my brother and sister never can say they ever had, and them being called growing pains but back then I was sensitive to cold too, feet would ache after bieng out in cold where others didnt notice such a problem. Then during adult hood I would find pains in feet after I ran or played hard on them where people would say "wow, mine dont do that".
My real problem where it became so I was wondering whats wrong is about 6 years ago now when I would have pains show up more then usual and just think it is because I work midnight shift, they would hurt for a day here and there and the tingling and burning started to wake me up at night. I let it go as if maybe I just need to make a change in my life soon and then I had problems walking, went to Dr and he said you have neuropathy and my bet is you have diabetes and sure enough he was right. Odd thing is I was found as a kid, 13 yrs old or so with iron deficiency and thyroid issues but was never treated for the thyroid problems even tho I had a full goiter on front of my neck at 13 yrs old.
I believe my thyroid issues are what has caused the neuropathy and when I became diabetic it livened up the problem even more because I went from no sugar issues to full blown diabetic without warning and that was when my feet were really bad. My theory is the length of time that I had thyroid issues may have brought on the diabetes in such a fast viscious speed but Drs just think it is about what I did wrong in my life, of course.
Now I have days that I actually cant walk and days of serious burning at bottoms of my feet and around my ankles like you wouldnt believe. The pain now goes to my head and those are the on going general pains, the shockers and stabbers are enough to set me off to yelling a sudden OUCH infront of people that makes strangers want to say, "DID I HURT you"?
Is not a nice disease cos there are no deformities to see unless you are a physio person knowing what to look for like range of movements and inability to do certain things like lift toes or proper gait. My physio tester after nearly a days worth of testing told me at age 44 or so that I was a lady of 80 yrs old in my abilities of strength and range of movements. It didnt take long to become a nearly crippling disease so watch for changes. I have even had styffling pains come across my foot while driving. couldnt move off or on the gas or brake peddle the pains were so bad, had to pulll off right there and wait till my foot could move again and then hurry home.
My hip and back are now a problem possibly because of the widened gait with one foot and DR says also degeneration of those areas.
Odd thing is people who dont know me ask how can you look so good and carry all these pains, it is a silent disease and we learn to live with most of it and get along with life but I am in pain nearly every minute and it is hard for others to know that unless they hear you cry out which I try not to do unless something gets me off guard.
Anyway take care and hope you find more answers too, let me know how it goes.
You really have gone through it/still going through it. Hope you have more days without pain than with.
thanks for sharing that.
Lyme disease has also been suggested to me.So need to wait to see neurologist again and see what he thinks and formal test results
Hope you get an answer that dont mean you will go through it long, some cases are reversable if you can find what is causing it, I did lots of things suggested and no improvements. I think it is because they are guessing at it being diabetes related and maybe it is not. Since now I know I have degenarative back and hip as well maybe that is causing it, gonna get more of that looked at by neurologist too if he will bother, some dont wanna go much further once you have a diabetic diagnosis cause that is the easiest answer since it does cause the problem but usually after you have bin diabetic for many years with no treatment, I was found to be diabetic much later then when my problems started but they dont care about that just because of how it looked for many years as a diabetic, Aids related thing
Funny how old medicine is hard to look away from when they are coming up with new discoveries all the time, some cant go with the flow and so there is a huge road block that many wont pass over and people will suffer needlessly.
I have cramp fasciculation syndrome. It's another kind of PNH. A lot of people think it's about the same as BFS, basically "BFS with cramping." It's not. I can't emphasize that strongly enough: It's not, it's not, it's not. In fact, it's often much closer to the neuromyotonia end of the spectrum than it is to the BFS end, sometimes distinguished only by EMG findings.
Besides the fasciculations and muscle cramping, it comes with a lot of paresthesias (pins and needles, stinging, shooting pains, etc.), fatigue, and exercise intolerance.
And my joints hurt. Now, that's not a symptom that gets listed for CFS. However, through reading up on muscular disorders, I've come to learn that joint pain is pretty common with them. When muscles are stiff or spastic, they can put undue pressure on the joints, resulting in joint pain.
Muscle spasticity can also lead to clumsiness.
I also feel weaker than I was, but I'm not actually weaker. That's because the exercise intolerance and the pain make it difficult for me to do half of what I used to - I do not have actual atrophy.
I don't know about the muscles looking droopy. Maybe the pain is leading to disuse, and that is leading to a loss of tone. I just wanted to let you know that joint pain, clumsiness, and a feeling of weakness (not actual weakness) are definitely compatible with some kinds of PNH disorders.
Thanks for your comments JeanieB. I have PNH and often feel quite isolated. It is nice (in a strange sort of way) to hear of someone who described my symptoms exactly. I also have a small heart murmur and adrenal fatigue to boot! Tell me, do you have any particular management plan? Are there any things that you find make things easier or worse? Supplements you take?
My specialisy discovered my vitamin D levels were very low (strange, as I am very outdoorsy) taking the supplement has certainly made me feel a lot brighter and sleep better, but hasnt effected any of the PNH symptoms at all.
We're working on that right now. I was just prescribed carbamazepine (sometimes marketed as Tegretol) a couple of weeks ago, but I seem to be having an allergic reaction to it. Hives, swollen lymph glands - yuck! Right now I'm waiting by the phone for my neurologist to call me back with, hopefully, the name of a new medication he can call in to my local pharmacy.
I have links to a lot of abstracts and one very good paper on cramp fasciculation syndrome on an anonymous blog I've started keeping. (The reason I have mostly abstracts is because the medical sites that make the papers available charge for the full thing. I can't do that, but they make the abstracts available for free, so I've linked them. The one paper IS free and is very informative.)
Anyway, the blog address is www dot crampfasciculationsyndrome dot blogspot *******.
sorry not to reply sooner. Away on holiday. Thank you so much for your reply. Have looked at different PNHs but didn't realise some of the things you mentioned - joint pain etc were part of it. So that could still be a possibility for me - still awaiting results. Less cramps and twitches now. More jerks and joint discomfort at present but not stopping me doing anything so shouldn't complain! Would this fit with my earlier throat symptoms tho'? Cramps and twitches in this area eased at the moment but feel I'm left with slight alteration in swallowing.
Hope things are going O.K. for you.
Hi again...been offline for a while, internet woes!
I also have tight Jaws sometimes..it is actually probably one of the first things I ever really noticed, but, it is such a random thing that I just thought I was clenching my jaw due to stress or something like that.
My Drs have put me on a plethora of things. Vitamin D (my levels were very low) which doesnt seem to help with anything other than my general energy levels, as well as magnesium, zinc and potassium. i dont think any of them really do much, but they probably benefit my general health,, which I figure cant be a bad thing.
i am also on a very low dose of impramine which is an old fashioned anti depressant. I dont actually suffer depression, but it helps with the pain and sleep.
Gonna check out your blo g..thinking of doing something similar myself.
Thanks for comments. Helps to "share". Saw neurologist 2 days ago who said he thinks it is PNH and just smiled sweetly at me when I said i now also had a lot of stiffness and pain in my joints , saying " you have nothing seriously wrong with you." Now I'm writing this at 5.45 a.m cos can't sleep/get comfortable for pain in right shoulder and hands and toes feel stiff. Neuro did bloods to try and help confirm pnh and other basic bloods that were omitted initially due to lack of communication between him and my gp!
Hope you doing ok.
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