sarahandlifethelifem
Member
hi guys
been a while since i've written on here - though i can't deny i've been a consistent daily lurker!
it's around 18 months that i've been twitching now, and i think for the main part that i've got my head around the fear, although it is still very hard at times....
anyhow - i had all the tests a long time ago now, and they were all clear... however my neurophsiologist did have a particular interest in my symptoms as he was running a study and he has just emailed me his conclusion, which i thought i'd pass onto all of you...
©FFPRHC Journal of Family Planning and Reproductive Health Care 2007:33(2); 135A neuromuscular syndrome caused by abnormalities in reproductive hormonesThis letter is intended to inform general practitioners (GPs), specialist doctors and nurses about a syndrome that causes distress and anxiety, from pain as well as from fear of sinister neurological disease. The syndrome is common – when known and looked for. I see an average of two patients a week. The syndrome is, to the best of my knowledge, not yet known.This neuromuscular syndrome is caused by abnormalities in female reproductive hormones, abnormalities especially precipitated by hormone replacement therapy (HRT) and contraception. The syndrome is distinct from the menopause and, unless recognised, persists for several years. Women aged between 30 and 60 years are thus referred from orthopaedic, plastic and vascular surgeons, from rheumatologists, neurologists and GPs with symptoms of an unknown neuromuscular disease.From studying 170 patients since 2002, I can report that the syndrome has the following features:Symptoms predominate in one upper limb, affect the non-dominant as often as the dominant, frequently include the same side of the neck and face and the ipsilateral lower limb.Symptoms vary between patients but are consistent – even over several years – in an individual and include:- Painful numbness and sensation of tightness in the upper arm and top of the shoulder, sensation as if an elastic band is present deep inside the arm, restricting grip or extension at the elbow;- Spasm, often likened to muscles being wrung-up, sensation of crushing over the shins and, by women who have borne children, to contractions of the gravid womb;- Dystonia in the fingers and toes. Fingers lock in flexion and toes override each other;- Twitching, including on one side of the face, and choreiform movements;- Fatigability.Despite numbness and fatigability, sensory deficit and actual weakness are minimal. This is an important distinction from the entrapment and generalised neuropathies, radiculopathies, myopathies and degenerative nervous disease, which the syndrome mimics. Many patients have not been diagnosed for several years, many misdiagnosed – frequently as the thoracic outlet syndrome (of fixed anatomical pathology in the neck). Several underwent surgery, unnecessarily.The syndrome usually develops over 2 weeks, within 4 months of institution, abrupt withdrawal, or change (sometimes to ‘parallel imports’ of the same brand) of the medicinal hormone.Some 75% of the women who developed this syndrome were on medicinal reproductive hormones; in 75% HRT, in 25% contraceptives – including to regulate the menstrual period.ContinuedA neuromuscular syndrome caused by abnormalities in reproductive hormones Page 2Hormones include:levonorgestrel-impregnated intrauterine device (IUD)estradiol patchparenteral progestogen-only contraceptive tablets:- progestogen and oestrogen- estradiol and norethisterone acetate- conjugated oestrogens-only estradiol- standard-strength norethisterone, mestranol- standard-strength levonorgestrel, ethinylestradiol.Twenty-five percent of the women have undergone hysterectomy, in half of whom, total. Eighty percent of those women were also on HRT and the syndrome was often precipitated by changes in HRT. In a few women, sterilisation by ligation of the Fallopian tubes was the principal gynaecological event and, in one, hormones were given to assist change of gender to female.Electromyography shows abnormal excitability of individual muscle fibres, but no primary muscle disease, no nerve entrapment and no generalised neuropathy. The syndrome is likely due to the effect of hormones on ion channels on muscle and nerve cell membranes.Diagnosis is made by eliciting association with hormones. As the contraceptive pill, depot injections, HRT and the IUD may not be regarded as medicines, and as onset may have been a few years earlier, the patient’s history needs specific questioning including consideration of the patient’s diary and/or GP prescription notes. Often the patient herself then suddenly realises the association.Treatment is by reassurance that the syndrome is not progressive and – if possible – by withdrawal of the hormone. Patients can also be forewarned of the possible neuromuscular symptoms when hormones are instituted. Although empirically hormones themselves can be considered for treatment, as precise assay of all female reproductive hormones is not available and as hormones have the side effects of breast cancer and embolism, hormones are best avoided. Carbamazepine can be tried, as can injection with botulinum toxin into selective underlying muscles where patients point to a distinct zone of pain, spasm or dystonia such as on the side of the neck on in the shoulder.
would love to hear anyone's opinions on this???
been a while since i've written on here - though i can't deny i've been a consistent daily lurker!
it's around 18 months that i've been twitching now, and i think for the main part that i've got my head around the fear, although it is still very hard at times....
anyhow - i had all the tests a long time ago now, and they were all clear... however my neurophsiologist did have a particular interest in my symptoms as he was running a study and he has just emailed me his conclusion, which i thought i'd pass onto all of you...
©FFPRHC Journal of Family Planning and Reproductive Health Care 2007:33(2); 135A neuromuscular syndrome caused by abnormalities in reproductive hormonesThis letter is intended to inform general practitioners (GPs), specialist doctors and nurses about a syndrome that causes distress and anxiety, from pain as well as from fear of sinister neurological disease. The syndrome is common – when known and looked for. I see an average of two patients a week. The syndrome is, to the best of my knowledge, not yet known.This neuromuscular syndrome is caused by abnormalities in female reproductive hormones, abnormalities especially precipitated by hormone replacement therapy (HRT) and contraception. The syndrome is distinct from the menopause and, unless recognised, persists for several years. Women aged between 30 and 60 years are thus referred from orthopaedic, plastic and vascular surgeons, from rheumatologists, neurologists and GPs with symptoms of an unknown neuromuscular disease.From studying 170 patients since 2002, I can report that the syndrome has the following features:Symptoms predominate in one upper limb, affect the non-dominant as often as the dominant, frequently include the same side of the neck and face and the ipsilateral lower limb.Symptoms vary between patients but are consistent – even over several years – in an individual and include:- Painful numbness and sensation of tightness in the upper arm and top of the shoulder, sensation as if an elastic band is present deep inside the arm, restricting grip or extension at the elbow;- Spasm, often likened to muscles being wrung-up, sensation of crushing over the shins and, by women who have borne children, to contractions of the gravid womb;- Dystonia in the fingers and toes. Fingers lock in flexion and toes override each other;- Twitching, including on one side of the face, and choreiform movements;- Fatigability.Despite numbness and fatigability, sensory deficit and actual weakness are minimal. This is an important distinction from the entrapment and generalised neuropathies, radiculopathies, myopathies and degenerative nervous disease, which the syndrome mimics. Many patients have not been diagnosed for several years, many misdiagnosed – frequently as the thoracic outlet syndrome (of fixed anatomical pathology in the neck). Several underwent surgery, unnecessarily.The syndrome usually develops over 2 weeks, within 4 months of institution, abrupt withdrawal, or change (sometimes to ‘parallel imports’ of the same brand) of the medicinal hormone.Some 75% of the women who developed this syndrome were on medicinal reproductive hormones; in 75% HRT, in 25% contraceptives – including to regulate the menstrual period.ContinuedA neuromuscular syndrome caused by abnormalities in reproductive hormones Page 2Hormones include:levonorgestrel-impregnated intrauterine device (IUD)estradiol patchparenteral progestogen-only contraceptive tablets:- progestogen and oestrogen- estradiol and norethisterone acetate- conjugated oestrogens-only estradiol- standard-strength norethisterone, mestranol- standard-strength levonorgestrel, ethinylestradiol.Twenty-five percent of the women have undergone hysterectomy, in half of whom, total. Eighty percent of those women were also on HRT and the syndrome was often precipitated by changes in HRT. In a few women, sterilisation by ligation of the Fallopian tubes was the principal gynaecological event and, in one, hormones were given to assist change of gender to female.Electromyography shows abnormal excitability of individual muscle fibres, but no primary muscle disease, no nerve entrapment and no generalised neuropathy. The syndrome is likely due to the effect of hormones on ion channels on muscle and nerve cell membranes.Diagnosis is made by eliciting association with hormones. As the contraceptive pill, depot injections, HRT and the IUD may not be regarded as medicines, and as onset may have been a few years earlier, the patient’s history needs specific questioning including consideration of the patient’s diary and/or GP prescription notes. Often the patient herself then suddenly realises the association.Treatment is by reassurance that the syndrome is not progressive and – if possible – by withdrawal of the hormone. Patients can also be forewarned of the possible neuromuscular symptoms when hormones are instituted. Although empirically hormones themselves can be considered for treatment, as precise assay of all female reproductive hormones is not available and as hormones have the side effects of breast cancer and embolism, hormones are best avoided. Carbamazepine can be tried, as can injection with botulinum toxin into selective underlying muscles where patients point to a distinct zone of pain, spasm or dystonia such as on the side of the neck on in the shoulder.
would love to hear anyone's opinions on this???
) My pcp, made me stop taking them. Spoil-sport. 
