all gone neurological

[sleepy237]

Apart from the fatigue and the pain, I am experiencing a strange collective of neuro symptoms. Chronic headache including migraine. Tongue and face numbness. (Had a TIA queried but Neurologist ruled as a complicated migraine). Awaiting MRI. The last month I have had so many neuro symptoms its beyond belief that it is cfs/fibro and I wanted to ask opinion on how many others have these strange symptooms with their illness. Another thing has started where I am having head jerking after the sudden need to sleep, head is jerking so much it is rising off the pillow disturbing sleep...I think myoclonus is nearest to it i can think. After wakening from these episodes Im having burning sensations running through neck into head much the same as after numbness, also like my pulse is felt everywhere in my body. I no longer know who to turn to. I am struggling with this illness and yet doctors see fit in the UK to rule out tests as medically unexplained symptoms. They only serve to defeat the hope I try to keep intact. It is a disgrace.

 

[Sallysblooms]

I hope you find an answer very soon.

 

[zoe.a.m.]

Apart from the fatigue and the pain, I am experiencing a strange collective of neuro symptoms. Chronic headache including migraine. Tongue and face numbness. (Had a TIA queried but Neurologist ruled as a complicated migraine). Awaiting MRI. The last month I have had so many neuro symptoms its beyond belief that it is cfs/fibro and I wanted to ask opinion on how many others have these strange symptooms with their illness. Another thing has started where I am having head jerking after the sudden need to sleep, head is jerking so much it is rising off the pillow disturbing sleep...I think myoclonus is nearest to it i can think. After wakening from these episodes Im having burning sensations running through neck into head much the same as after numbness, also like my pulse is felt everywhere in my body. I no longer know who to turn to. I am struggling with this illness and yet doctors see fit in the UK to rule out tests as medically unexplained symptoms. They only serve to defeat the hope I try to keep intact. It is a disgrace.

Hi sleepy,
Over here--at least where I am--it's no easier to get a doctor to take the neuro symptoms seriously. In fact, I've heard "these aren't what I consider 'evil' or 'scary' symptoms" from the neurologist I was sent to and another doctor said essentially the same thing. Either this level of neuro symptoms exists in a lot more of the population than I've thought, or most doctors are clueless and disinterested unless you look like a good candidate for Alzheimers or an illness that they take seriously....?

I've just recently begun having my "atypical" migraines again, and I am getting through a rather long and awful period of myoclonus, though I noticed it again the past two mornings with involuntary swallowing (one of my least favorites) right as I lose consciousness. For me the meds for PLMD or RLS are not effective. I can't offer much advice, but I can certainly sympathize!

 

[ahimsa]

I've been having left-sided burning and tingling - face, tongue, arm, leg, and trunk - for over a month. This is a new symptom for me. Because it was all on one side of my body my doctor ordered an MRI. I'm pretty sure that the MRI will be normal because I have not had any other neurological symptoms. But I understand that she had to rule out all the really bad causes for this kind of symptom.

Anyway, I'm just posting to respond to your comment about how hard it is to struggle with this illness. I completely understand that part (and it seems to be worse in the UK from what I have read). I'm so sorry to hear that your sleep is getting disturbed - good sleep is so important.

I am lucky to have a doctor who supports me and believes me even when we can't figure out what is causing a particular symptom. And after 20 year of this mystery illness I've had to learn how to deal with a high level of ambiguity. Nothing ever seems to be black and white when it comes to this medical condition. So I try to take things one day at a time. I try to find things that help me feel a little bit better even when I don't know what is causing the symptoms (much less having a cure for them). I hope you find something to relieve your symptoms even if you don't find any good answers.

Sending you hugs to help you get through this...

 

[Cloud]

My first 10 years with ME/CFS was mostly Immune symptoms with the "never ending flu", swollen lymph glands, achy joints and muscles, etc. But then it all changed and became predominantly Neuro with OI, NMH, POTS, severe cognitive problems, and PEM, etc. I did have have mild numbness on one side of my face and always had bad neck pain and stiffness...but the Immune symptoms were gone and to this day have not returned. But, I would take the immune symptoms over neuro any day. So, not sure if those are the same as your symptoms, but I have read that progression to be pretty common.

Have you tested for Lyme, and co-infections like Bartonella and Babesia?

 

[helen41]

I get burning in my legs, numb spots and sometimes what I can only describe as an ice pick stab in my ribs. My balance is impaired and I have Rhombergs sign. (Standing in a doorway so you will be protected, put your feet together and close your eyes. If you fall over to one side it is positive, common with many neuro problems, including CFS). I have muscle spasms but no jerkiness.

I have had 3 MRI's, all with small lesions but "probaby normal" according to the neurologist. Neuros seem to have this standard "wait and see" policy unless there are pretty definitive findings on exam or the MRI.
It makes sense that there would be neurological problems with an illness like CFS. Don't panic. It very likely is another part of this nasty disease.

 

[kaazoom]

My symptoms have always been mostly neurological. I had the infectious start, but rarely have immune symptoms, I don't get constant sore throats. In fact i always used to suffer from lots of colds and sore troats before I became ill, but I never get them now, although I occasionally get a day when it feels like one is starting but it never develops into anything, my other symptoms just worsen.

My neuro symptoms include a involuntary movements which make me look as if I have been startled although I haven't been, numbness in the side of my face, spastic gait, occasions when it feels like I have biting insect crawling over me, the right side of my face drops if i overdo things as does my eyelid, and cognitve difficulties. The neurologist i have seen don't seem bother by them. no lesions showed up on a MRI so as far as they are concerned it is all psychogenic!

It is these neurological problems that have helped to make me doubt the M.E. diagnosis. The only other possible immune symptom I have is the constant feeling of being poisoned.

Many neurologists in the UK have been influence by neurologist Dr Jon Stone, who works with psychiatrist Michael Sharpe. Here is a link to his website where he gives his view of these unexplained symptoms . http://www.neurosymptoms.org/ as far as he is concerned it is a "software problem" which he defines as "Our thoughts, behaviour, sensations and emotions..."

Paul

 

[Mya Symons]

...The last month I have had so many neuro symptoms its beyond belief that it is cfs/fibro and I wanted to ask opinion on how many others have these strange symptooms with their illness. Another thing has started where I am having head jerking after the sudden need to sleep, head is jerking so much it is rising off the pillow disturbing sleep...I think myoclonus is nearest to it i can think. After wakening from these episodes Im having burning sensations running through neck into head much the same as after numbness, also like my pulse is felt everywhere in my body. I no longer know who to turn to.

I have been diagnosed with Fibromyalgia and CFS. Yes, I also have problems with my head snapping back and muscle twitching or jerking all over the body. I take muscle relaxers before I go to bed or the jerking and twitching constantly wakes me up. I do not usually get headaches, but I get what I call "head stings." (I don't know if that makes sense. It is a different type of headache that I never experienced before the FMS/CFS.) I also get flashes of light and sometimes feel an electrical zap in my head at night while sleeping that wakes me up. (I can actually hear the zap and it sounds like electricity when the power surges.) I have had Fibromyalgia, if I remember right, for about 10 years. When I was first diagnosed, I was told that it was impossible for fibromyalgia to cause the symptoms I was describing regarding the muscle twitching and jerking. They put me through many expensive and painful neurological tests. Two years later, I was told that the muscle spasms and twitches were common symptoms of Fibromyalgia. I guess they finally figured out that it happens to many of us. I have never had the neck stinging symptom.

Have you ever had an MRI on your upper spine and neck? I once went to an in-person support group where a woman attended until her new doctor figured out her old doctor misdiagnosed her with Fibromyalgia. Apparantly she had some herniated disks in her upper spine that were pressing down on her spinal cord. The symptoms a person experiences from this are very similar to fibromyalgia symptoms. It can also cause severe fatigue. She had surgery on those disks and the symptoms went away. (This woman experienced stinging in the neck area.)

 

[taniaaust1]

My first 10 years with ME/CFS was mostly Immune symptoms with the "never ending flu", swollen lymph glands, achy joints and muscles, etc. But then it all changed and became predominantly Neuro with OI, NMH, POTS, severe cognitive problems, and PEM, etc.

My pattern was the same as Clouds.. but with several years severe fluish symptom CFS/ME along with FM ... which then after i had a remission.. came back all neurological. eg leg drag, symptoms like parkisons disease tremors.. couldnt balance and would fall to ground when i went to turn a corner, hand would just suddenly drop objects (including my coffee) so i couldnt trust my hand, numbness to the point i completely lost some of my body sensation and couldnt feel body parts including couldnt feel hot things , feeling different temperature differences in different parts of body eg I could be both hot and cold at once,

Neurologists tested me and I had a postive Rombergs. Also got diagnosed by a neurologist as having rhymthic myoclonus as my jerks and spasms were very severe (excertion or bright light would set them off) and I'd have bouts of those where it wouldnt stop and the neuro symptoms were easily observable (to the point that one GP on seeing me, rang an ambulance, he thought i'd had a drug overdose or serotinon syndrome cause he had no idea ME could do that).

My neuro symptoms now have gone, my symptom complex shifted yet again.. and instead now i have autonomic issues (BP dysregulation, POTS) and also severe mood swings and seem to have some kind of adrenaline issue. Neurological issues are certainly part of canadian definition CFS/ME.

I'd rather have the scary neurological symptoms i had including the seizures I used to get rather then the crazy psychological symptoms I get now which have ended up making me end up in jail and getting in trouble with the law as i now have no emotional regulation control. Ive lost the ability to control my emotional states... I think the part in my brain which controls that... must really be damaged or something (thou as normal nothing shows up on MRI thou my EEGs i guess would be still abnormal. They were abnormal when i had all the neurological symptoms).

 

[helsbells]

Just as a "just In case" I will mention this - I am sure the majority of people experiencing burning and tingling etc will be the underlying illness but from the allergy/MCS hospital I attend that is a symptom a lot of people with electrical sensitivity describe. Most people with EI will have it secondary to illness's such as ME or allergies although for some it is a primary problem. So if you have started getting this out of nowhere just think if you have had a mobile mast recently sited or in the home have you made changes. EG have you gone from cabled to Dect phones or began to use wireless INTERNET. I mention it because if these were the causes for even one of you, relief would be possible if its something in the home.

 

[taniaaust1]

Numbness and tingling may also be a sign of B12 deficiency. So make sure your levels seem to be fine. Be aware that what they say is normal range for B12.. many get deficiency symptoms if at the lower end of that range. Some say some get symptoms from it if its lower then 500 (recommended rate thou is far lower then that, i had a level of 360 and B12 injections have helped me some).

 

[Mithriel]

On B12, many MS patients use sublingual B12 as it bypasses the stomach like injections, but you can take it daily and get it from a chemist without prescription. It has worked very well for me.

I have always had neuro symptoms with transient paralysis, blindness and seizure like episodes. I developed a movement disorder called Paroxysmal Dyskinesia, it might be worth looking that up. (to much typing to describe, sorry) which can happen as a consequence of neurological diseases. I heard about this from other ME sufferers who have it.

My involuntary movements and intention tremor became so bad I could not even feed myself. I take baclofen which damped them down a lot and gabapentin which helps with that and with pain.

I get a lot of nerve pain. Some of it is pulsing, like you describe a pulsing through the body too. I think it is caused by a pain signal being carried through the nerve until the reactants are used up. No pain. Then they reform and the pain signal goes through again.

I have a positive romberg - I've been known to fall over when I blink and my balance is very bad which I think is a problem with proprioception.

I also have dystonia where my muscles twist into strange positions.

Neurological symptoms with no known cause are classed as hysteria. It angers me that as soon as they decide XMRV causes brain damage there will be a cause and we will no longer be hysterical.

So.... I don't know what you have so you must be hysterical. very scientific.

Mithriel