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does anyone else get this? people have said it is probally from my small fiber neuropathy. But i cant help but feel there is something more. esp because of the tremors and such i get. Also it happens alot more i the evening weirdly.
Dear Whatsreallygoingon,
Curious, did you have a muscle biopsy that gave you the small fiber neuropathy DX? I had one about 18 months ago, in this journey of getting DX’ed. Mine was a surgical biopsy as they wanted a pretty large piece of leg muscle to test. My results were smallness of type 1 fibers and increase in internal nuclei. My neurologist also writes it up as “myopathy with central nuclei”. I also have abnormal EMG and nerve conduction studies.I haven’t seen anyone else on this forum mention having this DX or these kinds of testing and wondering if people just haven’t mentioned it, or haven’t had the kinds of symptoms we have had that led to this line of testing?
I rarely get the kinds of shocks you talk about, but have a friend who is just like us here (wish she would join in here!) and she gets the shocks very badly. She also has had a muscle biopsy (though a simple punch one) and the abnormal EMG/NCS.
I don’t know if that helps or not….;)
Dear Whatsreallygoingon,
Curious, did you have a muscle biopsy that gave you the small fiber neuropathy DX? I had one about 18 months ago, in this journey of getting DX’ed. Mine was a surgical biopsy as they wanted a pretty large piece of leg muscle to test. My results were smallness of type 1 fibers and increase in internal nuclei. My neurologist also writes it up as “myopathy with central nuclei”. I also have abnormal EMG and nerve conduction studies.I haven’t seen anyone else on this forum mention having this DX or these kinds of testing and wondering if people just haven’t mentioned it, or haven’t had the kinds of symptoms we have had that led to this line of testing?
I rarely get the kinds of shocks you talk about, but have a friend who is just like us here (wish she would join in here!) and she gets the shocks very badly. She also has had a muscle biopsy (though a simple punch one) and the abnormal EMG/NCS.
I don’t know if that helps or not….;)
Hi there. my small fiber neuropathy was diagnosed at a autonomic clinic in cleveland. aswell as pots. I did however get a muscle biopsy done here where i live. (cause they suspected my pots and stuff if from mitochandria issue) I did not show mito. However it did show Fatty infiltration of the muscle and possible neurogenic atrophy (my muscles are basically melting away to much fatty infiltration for them to confirm it.) my muscles get very achey. And sometimes it takes me awhile to even make a muscle. lol i have to really concentrate on making it when it gets real bad. “weird right?” With all my diagnosis they are leaning more towards autonomic neuropahty now and checking more immune disease’s I go in on the 2nd for more autonomic testing. and a ton of blood work.
My muscle biopsy was also to look for mito! And, was also negative. So many ups and downs in this journey.
My neuro wanted me to be seen at the Neuromuscular Disease Center in Saint Louis to try to figure out what my biopsy results “meant” and to maybe, MAYBE, get DX (but don’t get your hopes up on that… she said most people don’t get a DX, but they do learn more from going to see these specialist). Well, I live on the West Coast and that was just too far to go with so little possible outcome from the adventure and expense.
I still don’t know what it means or how it figures in with EDS/POTS/Masto/CCSVI.
Hi,
I can comment on a couple of issues here, firstly, whilst in A & E in 2002 (from immediately following my head and neck injury) laying on my back in the cubicle, I experienced an electric shock type episode. It was like an sharp electric shock from the top of my brain right down to my toe, sudden, intense and over in a flash, as I say from top to toe. I found out these were called Myoclonic Jerks. These I continued to experience, usually when laying relaxing, for many many months. I rarely get them now (but there again I don’t lay down). What I do get now, is something that feels very similar but not as intense and it only affects one limb, be it an arm or a leg and this can happen at any time night or day. My mum’s cousin’s daughter had Multiple Sclerosis and I remember her legs and arms used to jerk in a similar fashion (but a lot more often than mine do) – further adding to Dr Diana’s Theory of a possible relationship between EDS and MS. (I was diagnosed with EDS a couple of years ago).Secondly, with regard to your enquiry as to whether anyone else had a diagnosis of limb neuropathy, I went down to London in 2004 for Autonomic Testing at our UK Referral Unit at UCLH, after suffering intermittently purple painful legs and becoming unable to walk and the NHS weren’t doing anything to help me. I paid a small fortune for a full suite of tests, lasting 5 days, as an inpatient. How glad I was that I went, for they spotted several problems, as follows:
1. Postural Orthostatic Tachycardia Syndrome (POTS)- with exercise & remaining upright.
2. Peripheral Vestibular Dysfunction – causing my balance issues.
3. Mild Radiculopathy in my right leg following EMG needle tests in my muscles,
showing “Mild Excess of polyphasic units of normal or increased duration”, also
“Some rather large units recruiting early”, another leg muscle showed
“Occasional Polyphasic units”.
They also spotted thermo-recognition problems in my right lower limb and called
this ‘Small Fibre Neuropathy’. An explanation, at last!I do know I felt very well indeed, in comparison to before, following the 5 days bedrest!!
Don’t know if there’s any significance in this but my blood tests showed that my cholesterol was on the high side but that my ‘good’ cholesterol the HDL, was high too, so this gave me an advantage (and reduced any risk). Additionally, they noticed my ‘C-Reactive Protein’, which is an inflammation marker, was above normal.
Regards
Barbara
(UK)Ourfullhouse, crazy with the st louis thing. i just started seeing specialist there. “i live about 2 hours away” my daughter and i got diagnosed with EDS type3 in december. in st louis aswell. i have yet to make up my mind about the doctors there. Though they did make an attempt when they was wrong (saying pots and EDS was not connected) to run me down in the hallway to tell me i was right. so they are atleast trying. 🙂 As far as the MS thing. In my Gut i have this feeling this is what it is. But you would think with 5 mri of my brain in the past 18 months they would atleast see lesions right?
Whatsreallygoingon,
My symptoms started totally looking like MS about 3 years ago, with exacerbation’s 2-3 times a year that left me worse and weaker after each flare. Prednisone helped tremendiously. But, no lesions on MRI’s. I kept looking at MS and when the info about CCSVI was coming out, I read up and watched it for a while. Then, in 1/2011 Arizona Doppler was going to be in Seattle to do CCSVI screenings and my husband and I decided to get the imaging done, as none of my doctors were figuring anything out at the time. While waiting for my appt time, I had convinced myself this was a waste of time, that I couldn’t have CCSVI, etc. And yet, I had/have it, and not a borderline case, but pretty bad (met 4 of the 5 Zamboni Protocol criteria). Back then, it was thought that anyone with CCSVI had MS, by default. I think that view is changing, though I think untreated it will progress. Eventually people like you and I will/would probably have lesions. I had venoplasty last April and my reduced flow was severe in several veins. I went back again in July 2011 to have my ovarian vein blocked (trying to deal with heavy, heavy bleeding and from my first venography we knew that because of all my vein issues a lot of blood flow was going backwards through the ovarian vein to the uterus) and a stent put in the left iliac because of May-Thurners and my IR looked at my other veins while I was in there and all but one were exactly the same as they were before my first venoplasty just 3 months previously. I need stents, but my IR wants to wait till the dissolvable stents are available in the US (years away still). Since then I learned more on this site about how all these things (POTS, EDS, CCSVI, Mast cells, etc.) are interrelated.Some of my neurological symptoms are still better since having my CCSVI treated, but most of the symptoms that went away for the first 6 weeks after the first venoplasty, are back… and some, like the POTS, continue to get worse. I didn’t have any relief after the second venoplasty, except that my left leg has stopped swelling due to the stent placement. Looking back, the day before my procedure I had a severe flare up from getting too warm, so mast cells or cytokines were probably running rampant… not a good place to be when having this procedure, and I think that is why I noticed no changes. Also, my left juggler, which is/was 80% stenosed, has been painful off and on ever since that venoplasty. Not really sure what that means, but makes me think things are swollen and backed up.
Whatsreallygoingon,
My symptoms started totally looking like MS about 3 years ago, with exacerbation’s 2-3 times a year that left me worse and weaker after each flare. Prednisone helped tremendiously. But, no lesions on MRI’s. I kept looking at MS and when the info about CCSVI was coming out, I read up and watched it for a while. Then, in 1/2011 Arizona Doppler was going to be in Seattle to do CCSVI screenings and my husband and I decided to get the imaging done, as none of my doctors were figuring anything out at the time. While waiting for my appt time, I had convinced myself this was a waste of time, that I couldn’t have CCSVI, etc. And yet, I had/have it, and not a borderline case, but pretty bad (met 4 of the 5 Zamboni Protocol criteria). Back then, it was thought that anyone with CCSVI had MS, by default. I think that view is changing, though I think untreated it will progress. Eventually people like you and I will/would probably have lesions. I had venoplasty last April and my reduced flow was severe in several veins. I went back again in July 2011 to have my ovarian vein blocked (trying to deal with heavy, heavy bleeding and from my first venography we knew that because of all my vein issues a lot of blood flow was going backwards through the ovarian vein to the uterus) and a stent put in the left iliac because of May-Thurners and my IR looked at my other veins while I was in there and all but one were exactly the same as they were before my first venoplasty just 3 months previously. I need stents, but my IR wants to wait till the dissolvable stents are available in the US (years away still). Since then I learned more on this site about how all these things (POTS, EDS, CCSVI, Mast cells, etc.) are interrelated.Some of my neurological symptoms are still better since having my CCSVI treated, but most of the symptoms that went away for the first 6 weeks after the first venoplasty, are back… and some, like the POTS, continue to get worse. I didn’t have any relief after the second venoplasty, except that my left leg has stopped swelling due to the stent placement. Looking back, the day before my procedure I had a severe flare up from getting too warm, so mast cells or cytokines were probably running rampant… not a good place to be when having this procedure, and I think that is why I noticed no changes. Also, my left juggler, which is/was 80% stenosed, has been painful off and on ever since that venoplasty. Not really sure what that means, but makes me think things are swollen and backed up.
Im almost postive all my brain stuff has ALOT to do with this! 7 years ago i was diagnosed with pseudtotumor ceribri during my pregnancy. My preussures get insanely high. I have topped out on spinal taps. my normal range is inbetween 40 and 50ish. I started diamox during pregnancy but it was never tested with pregnant women. So they didnt keep me on it long. After the pregnancy they went spinal tap happy! i had around 30 to 40ish spinal taps. with no relief. Finally getting a shunt put in dec 6th of 04. only to get meningitas twice. (meningitas being all thru the tubes of the shunt i had to get it removed. Or i would keep getting meninitas) After the shunt removal it terrified me! so i just sufferd with no relief. I have been on topomax ever since. And still have horrible pressures. I am monitored every 3 months with a neuro optomolgist. and neurologist. They all say now i need another shunt. But i am prone to meningitas. So noone will operate. Unless it is a life saving emergency. Even with all the treatments and weight loss. Nothing has changed. I cant help but think there is more too it. Esp since the chiari diagnosis.
I had found info that perfectly described the electric shock thing. Will try to find it again but the gist was that the dura becomes inflames and aggravated. It’s very under diagnosed too. Go figure.
I would love more information. My 12 year old son calls them zaps… he gets them often and it has been happening more often. He also a lot of issues with pain in his legs. Anyone have a way to deal with this he is alredy starting to show depression from having to deal with pain at a young age.
I would love more information. My 12 year old son calls them zaps… he gets them often and it has been happening more often. He also a lot of issues with pain in his legs. Anyone have a way to deal with this he is alredy starting to show depression from having to deal with pain at a young age.
Hi Berluv,
Here’s my way of dealing with leg pains:The severe excrutiating pain I used to get when my leg went purple, was very difficult to deal with. The only solution was to sit down and if that didn’t work, to lay down and if that didn’t work, to CRY!! The solpadeine helped take the edge off but that’s all. I did find that if I had a daily bacon sandwich, it wasn’t as bad, maybe the salt from the bacon expanded my blood volume, or maybe it was the growth hormone that it’s pumped with, who knows!
I also have to watch the position of my legs, as raising them to the height of my bottom causes cramp, so I even have to sleep with them at least 6″ lower than the level of my bottom.
If I’m sitting still for any length of time, I have to wiggle or judder my legs to keep the pain away, I get a sort of warning feeling, an ‘aura’ if you like, that the pain’s going to start if I don’t improve my leg circulation by juddering my leg. I used to use a massage mat, that covered a full recliner chair from top to bottom and if I sat on that and switched on the lower half, that helped alleviate this warning feeling and therefore avert the full pain attack.
I have my lower legs massaged twice a week and this helps a lot too. I think it get’s rid of the lactic-acid build-up (I could probably do with having this done every day!)
Coldness, worsens the pain, so I wear support hose, legwarmers, long trousers (all year round!) and always shoes or slippers (never bear-footed, especially on a cold floor, that’s asking for trouble!)
The 24/7 support hose helps lessen odema and helps circulation too.
Hope some of this helps
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) & Vitamin (C,D,B3,B12) Deficiencies!
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