Hi there - I wonder if I can pick your brains? I have just spent the last 16 months neurologically challenged and stumping the medical professionals. The latest thing is to try Parkinson's drugs to see if they help (which, so far, they are!).
I started off 16 months ago with ridiculous fatigue; muscle twitching; cramping and muscle spasms; perceived weakness; altered skin sensations and myoclonic jerks etc. My GP was on the verge of diagnosing me with MS but the scans were normal. They are still normal.
I had two months off work but went back in January '12 fighting the tiredness. I was jerking less and the spasms were less but not gone. My skin still felt weird. I had/have reduced sensation in my legs. In March I started 'buzzing' all through my legs and pelvis. This has never gone since. I'm on gabapentin which mostly controls it.
I felt pretty well in summer; got through Autumn term and had a pretty good Christmas too feeling much better even if nowhere near my pre-neurologically challenged self.
Come New Years Day I came over all weak and unwell, wobbly leg muscles and severe fatigue again. I managed only 3 days back in school (I'm a teacher) and they put me on long term sick leave to go and find out what is wrong and try to get better so they can have me back at full health. I slept all through January and early February pretty much.
Now: I can sleep for Britain. I have internal vibrations both unseen and unfelt by anyone but me. Burning pain in my thoracic back area and radicular pain down my left arm. Electical type zings in my head. Myoclonic jerks when relaxing or driving (affecting my legs, arms, hips and head). Tight, painful muscle cramps in my legs especially at night. Inconsistent difficulty getting upstairs. A very fine subtle tremor in my right index finger (which went through a phase of flicking by its own accord - annoying when typing!). I walk slowly with small steps. I have painful hips. I can't empty my bladder properly. I have difficulty forming sentences/finding words which requires a lot of patience from my children and partner. I seem to have turned dyslexic too - this from a near perfect, pedantic speller!
I am now taking Pramipexole alongside the gabapentin, which has reduced the muscle cramps and myoclonic jerks so that we can now get some sleep. I still sleep once in the day but not twice or for many hours like before. I'm weird when I get up after a day sleep though - very confused and apparently slurring my words, sounding drunk.
As you can imagine I'm desperate for a correct diagnosis. Does anyone on here have the jerks or burning thoracic pain? Does anyone have any idea of what I should do next? Do you think this could possibly be Parkinsons or really not?
Thank you for any input into my situation.
Rebekah (age 44) x
P.S. Sorry it was such a long post 
Hi Rhebekah,
Not being a neurologist I'm not qualified or willing to give a diagnosis,here it comes,BUT,you describe the symptoms not all the same I had before I was diagnosed in December.The being able to sleep for Britain I have always being able to do but I'll be the first to admit I love my sleep.(now I average 3 hours a night).
I suffer with severe hip pain which being on my feet 8hours a day doesn't help,I did suffer with complete lack of use of my right arm before starting sinemet,slurred speech yes had that as well now I just talk very quietly.
Whatever the outcome keep your chin up,I found the easiest way of dealing with PD is to laugh and joke about it
Oh and keep pushing your neuros it took me over a year to get a diagnosis
Not being a neurologist I'm not qualified or willing to give a diagnosis,here it comes,BUT,you describe the symptoms not all the same I had before I was diagnosed in December.The being able to sleep for Britain I have always being able to do but I'll be the first to admit I love my sleep.(now I average 3 hours a night).
I suffer with severe hip pain which being on my feet 8hours a day doesn't help,I did suffer with complete lack of use of my right arm before starting sinemet,slurred speech yes had that as well now I just talk very quietly.
Whatever the outcome keep your chin up,I found the easiest way of dealing with PD is to laugh and joke about it
Oh and keep pushing your neuros it took me over a year to get a diagnosis
hi
you describe the electrical zings very well - i have had about 5 this morning!
you have one or two symptoms that are rare in pd like the myclonic jerks (my son had those as a baby and was on small doses of gaba-related meds) but i am sure someone reading this had had them too. its interesting you are on a gaba med - pd is usually treated with dopamine but (and i have only just looked this up!) gaba seemingly is also affected and people with pd might benefit from that too http://hms.harvard.edu/news/challenging-parkinsons-dogma-10-24-12
perhaps your pd has attacked gaba cells more vigourously than usual? who knows.
there are other pd-like diseases sometimes called parkinsonian or parkinsons plus - but they are often difficult to diagnose and are rare to very rare. lets hope the meds keep working - one of the signs of a pd diagnosis is the success of pd meds.
good luck
you describe the electrical zings very well - i have had about 5 this morning!
you have one or two symptoms that are rare in pd like the myclonic jerks (my son had those as a baby and was on small doses of gaba-related meds) but i am sure someone reading this had had them too. its interesting you are on a gaba med - pd is usually treated with dopamine but (and i have only just looked this up!) gaba seemingly is also affected and people with pd might benefit from that too http://hms.harvard.edu/news/challenging-parkinsons-dogma-10-24-12
perhaps your pd has attacked gaba cells more vigourously than usual? who knows.
there are other pd-like diseases sometimes called parkinsonian or parkinsons plus - but they are often difficult to diagnose and are rare to very rare. lets hope the meds keep working - one of the signs of a pd diagnosis is the success of pd meds.
good luck
Hi Rubber Car
Personally I've never experienced any of those symptoms, just the usual tremor, dystonia etc.
If the neuros cant nail it I dont think I can. If the drugs work for you do you need a name for it?
If you want to be part of the PD online community, here's as good a place as any to start.
I'm certain there's someone on here who will have had all your symptoms and more besides.
You wont have to wait long.
Good Luck
Personally I've never experienced any of those symptoms, just the usual tremor, dystonia etc.
If the neuros cant nail it I dont think I can. If the drugs work for you do you need a name for it?
If you want to be part of the PD online community, here's as good a place as any to start.
I'm certain there's someone on here who will have had all your symptoms and more besides.
You wont have to wait long.
Good Luck
Hi Rebekah
That sounds mainly familiar. I am in a very similar situation to you age wise, career wise and symptom wise. I'm afraid I don't have an answer to your question though as it is only 2 weeks since I first saw the neurologist and I'm waiting for a DATscan to confirm the diagnosis.
My noticeable symptoms started just under 2 years ago with pain down my right arm which was very much a buzzing, electrical type of pain and pins and needles. There were times when I felt like I could shoot a spark out of my fingers. I don't get that same pain in my leg but it just feels like it doesn't belong to me - my left side works normally but my right side takes a lot of concentration to control. I get a lot of muscle twitches in my legs and feet, even when I'm asleep.
I've also gone through the frustration of trying to get a diagnosis and this was definitely not what I was expecting. My sister has MS and that had already been ruled out in my case so I figured that it was caused by me being somewhat hypermobile and that was causing stuff to trap and causing bad nerve feedback and balance problems - it has been a bit like a row of dominoes going down. I also have the problems you mention of slurred speech after a nap and I keep forgetting words - same with the bladder problems, walking with teeny steps (if I don't use crutches I walk like one of those clockwork dolls, having to throw my weight from side to side and my hip drops very badly if I don't keep my leg rigid) My handwriting has become teeny and very painful.
I have had issues at work since the symptoms became very disabling - I desperately want to work but they don't seem to want me now.
I hope you get some answers soon - have you seen a neurologist? If the Parkinson's drugs are working then your answer may lie there.
That sounds mainly familiar. I am in a very similar situation to you age wise, career wise and symptom wise. I'm afraid I don't have an answer to your question though as it is only 2 weeks since I first saw the neurologist and I'm waiting for a DATscan to confirm the diagnosis.
My noticeable symptoms started just under 2 years ago with pain down my right arm which was very much a buzzing, electrical type of pain and pins and needles. There were times when I felt like I could shoot a spark out of my fingers. I don't get that same pain in my leg but it just feels like it doesn't belong to me - my left side works normally but my right side takes a lot of concentration to control. I get a lot of muscle twitches in my legs and feet, even when I'm asleep.
I've also gone through the frustration of trying to get a diagnosis and this was definitely not what I was expecting. My sister has MS and that had already been ruled out in my case so I figured that it was caused by me being somewhat hypermobile and that was causing stuff to trap and causing bad nerve feedback and balance problems - it has been a bit like a row of dominoes going down. I also have the problems you mention of slurred speech after a nap and I keep forgetting words - same with the bladder problems, walking with teeny steps (if I don't use crutches I walk like one of those clockwork dolls, having to throw my weight from side to side and my hip drops very badly if I don't keep my leg rigid) My handwriting has become teeny and very painful.
I have had issues at work since the symptoms became very disabling - I desperately want to work but they don't seem to want me now.
I hope you get some answers soon - have you seen a neurologist? If the Parkinson's drugs are working then your answer may lie there.
Hello Rebekah8 It certainly sounds as if you have PD everyone is of course different but reading your post I have in my recent past suffered all of the unpleasant horrible effects you mention. I have been fortunate in my battle with
BLACKHEART "My description" to have the latest weapon on the market, Duodopa,it
has worked a miracle for me, I can walk talk think clearly no tremor no short little steps I have recovered so many aspects of my life which I thought were gone
forever, it will give me a much better quality of life , at this time it does need a bit fine tuning, and I do have problems through the night with mild PD symptoms but as I say it does need a bit of adjustment to optimize the device and
as time goes by no doubt the manufacturers will improve and refine the product in much the same way as the mobile phone has advanced over the years, I only wish every one afflicted with parky could have DD it is very costly and is not a cure but in the short term I have been given my life back and I intend to live it to the full, speak to your Consultant about DD the savings made on conventional drugs
can offset the cost of DD to certain extent, you may be eligible I should tell you it requires a operation , if you go on the Parkinsons Website and type in Duodopa you will find out all you need to know, Good Luck.
Kindest Regards
fedexlike
Thank you all so much for your replies. I think it's dawning on me that this could actually be the answer but I'm too shocked to find it really could be! (if that makes any sense) Time to put my head in the sand.
Beyond the big things there have been lots of niggly things I've ignored as irrelevant but maybe they're not... my writing has been scribbly for a while but I put that down to numbish fingers. Dribbling slightly on my pillow at night was probably the first strange thing I noticed about 19 months ago - how attractive! Things don't have much taste. Those kind of things you never mention at a neuro appointment as they sound silly on top of everything else.
Leyther - yes, I do need a diagnosis, we all do! Mostly for equality adaptations in the workplace; for explanation of your weirdnesses and people's understanding; for disability benefits if required; for your own peace of mind, knowing you have a concrete reason for sleeping so much and slurring your words etc and are not psychotic; for access to drugs....the list goes on.
I'm really interested to share and hear about these strange symptoms in other people, it really helps to know you're not alone.
Thank you!
bekah x
Beyond the big things there have been lots of niggly things I've ignored as irrelevant but maybe they're not... my writing has been scribbly for a while but I put that down to numbish fingers. Dribbling slightly on my pillow at night was probably the first strange thing I noticed about 19 months ago - how attractive! Things don't have much taste. Those kind of things you never mention at a neuro appointment as they sound silly on top of everything else.
Leyther - yes, I do need a diagnosis, we all do! Mostly for equality adaptations in the workplace; for explanation of your weirdnesses and people's understanding; for disability benefits if required; for your own peace of mind, knowing you have a concrete reason for sleeping so much and slurring your words etc and are not psychotic; for access to drugs....the list goes on.
I'm really interested to share and hear about these strange symptoms in other people, it really helps to know you're not alone.
Thank you!
bekah x
hi I was taking gabepentin also til I found out it makes the jerks worse.My jerks got alot better after going off gabepentin
hope it helps
I have had PD for 5 years now. My sinemet works great unless Im jerky,haha
DO you get shoulder shrugs now they are a work of art aren't they.haha
Keep in touch
John
old thread but the gabepentin caught my eye, My gf takes it,she's dependent on it, it has ruined her life and her gp doesnt seem too bothered about getting her off it, the most evil drug ever in my opinion.
Sorry missed all these posts what's the big thing about gabapentin I've been on max dose for 8yrs
for nerve pain
yes she took it for nerve pain, but i'm afraid Gus it's ruined her life, that's the BIG thing for Her and Me. As i said she became Dependent on it. evil stuff and should be banned.
hi sea angler can you tell me why there so bad .cheers gus
Gus
I dont really want too put my gf's personal life on the internet, but, she went from a very confident laid back woman, too a very un confident terrified woman with huge anxiety problems dependent on these pills beyond the max dose of 3000 mg.
I'm sure if you type in gabapentin you'll find plenty of horror storys behind these pills.
cheers sea angler,just worried about the jerk movements i will look on web
she also suffers seizures and myoclonic jerks, the seizures have put her in hospital several times with falls giving her the anxiety and injury, i am a layman on the subject but i think the gabapentin targets a similar area of the brain that our pd drugs target.
someone has started a thread on myoclonic jerks in the forum. i get them myself at night but in no way as severe as my gf does she gets them in her sleep and when shes awake.
Hi Sea angler,
Hows fishing.I saw this thread about your GF.Gabepentin can very well make the jerks much worse like it did me.My wife takes it and maybe thats why she is miserable at times.Well maybe she will get off it and find her oldself.
Hope all is well with you
fishing buddy
john
Hi John
Fishing has been very slow in fact its been the worst ever year ive known with no Cod in the north sea from yorks too kent not even commercially caught , that's several hundred thousand square miles of sea without cod in, there's several theorys on it from wind farms to sea temps. Looking forward to the spring though, warmth of the sun and hopefully a few skate return inshore
Sadly my girlfriend died the same year 16th december 2015 So those pills really did ruin her life.
other than that i'm ok and i hope you are too and a successful withdrawl of them for your wife.
Hi Sea angler
Im so sorry about your girlfriend.I also belive that drug can cause a lot of trouble.
The fishing isjust starting again here Perch and trout are on the top of the list.I think our salt water species here off New England are also in trouble.The haddock has gone up allot in price here also for fish fries.
I had a decline in my jerks lately.Three things I did.I stopped mylow dose of synthroid.Iwas only taking .25.I also changed my brand of carbolevadopa.Same dose different manufacturer,I also have been sleeping longer.Our miserable political atmosphere is so depressing.Hope a good outcome comes with more known about the scandal with the Russians.
Take care
john