ive tried reading this over 5 times,abit hard with brain fog try again to tomorrow
can anyone help ive been fobbed of for 2 to 3 years now i have had quit literely thousands of appointments i do mean thousands i have an great amount of the symptoms which can get realy bad its destroyed me marrage weve bean seperated for about 3 or 4 months now i rise my kids by myself so ive always needed to look after myself bean health freak for years so far ive bean diagnosed with r.l.s restless leg syndrom thats wat stop me and my partner sleaping in the same bed touretts ptsd after i had a long term miss diagnoses for schizophrena removed insomnia and reignal pain syndrome and i need corective shoe where becuase of my giat i never had any real test apart from lots of bloods and examination i always get fobbed of i dont think i actualy have any of them conditions im in an absurd amount of pian opiats dont work my legs randomly give way at the knee or knees and i have to catch myself before hitting the ground im not always the winner lol lately my vision is gone its gone realy bad lot of time i cant watch tv i have a constant stiff and sore neck like its bean in the same place for ages i need to stretch every min of the day constant dead arms and legs and pins and needles and the left leg is constantly freezing and numb i mean dead i could turn away and you could stab it i wouldnt no my hands are badly swollen with my feet twitches all over the main ones are eyes and chest and legs when i am speaking i get like a nerv pull on my face feals like its trying to tear itself of stops me speaking realy realy bad bad fatigue and head aches and one day ile b not to bad then for two days i feal like im about to die and alot of the time it seems like a option couple of mounths ago at a diff hospital i had a steriod injection for my hands for 1 weak i was brand new ive got to wait mounths to see if i can have it again and have evan thought of buying some of the streats im fed up with fealing like this with a box of tramadol which do more harm than good i have to change things some how also 2 more soz lol last couple of weaks ive started having fits stoped tramadol just incase that was to blame still getting them and i grew up in the 80s lol caring for my dad who ultumatly died from m.s there wernt alot of help back then or alot known no one will listen to me give me a new syndrome new piankillers and im suposed to be happy its making me so down my left leg is lit dead ive evan sat there trying to get docs to punch it to try and get them to see thats were i get more spasms to there quit scary to see like a alien under the skin my boy loves it lol anyway any advise PLEASE soz spelling
<big>i was in the hospital recently and had a lot of MRI scans done with and without contrast and was told in the MRI they cannot say for certain if it's just an artefact or its a definite lesion they are seeing on the scans i also had what was called EMG(</big>Electromyography) and some type of lesion showed up on the test and they where questioning if i had MS one doctor told me i showed all the symptoms for it and my GP had put me on cyclopenzaprine which they thought will aid if i was suffering with MS. I think the uncertainty of not knowing is worst than knowing for certain at least if i knew for certain it would give me and my family peace of mind can anyone help me in giving me advice to what should my next step be PLEASE!
Have you spoken to an MS nurse thats my next move?
I have been waiting a month so far since referral from my doctor to a neurologist. My appointment is not until 17th November. I continue to get tingling hand, fingers, tongue, toes, crawly feeling up bottom and back of legs, sharp pains in my eyes which make me jump, neuralgia on one side of my face I had previously dismissed as sinuses when sinuses not blocked, (this has been going on for years), and various other symptoms. odd pains here and there which I put down to rheumatism, cognitive impairment which I put down to getting on a bit (I’m a few months off 62), varying problems with bladder, bowels etc. I don’t get wobbly legs, but I can trip over nothing, and frequently do. One knee collapsed last year, but it was a few months after a knee injury when I fell at the bottom of a hill so assumed it just just injury from that fall, and loads of other symptoms which I could explain away. It was not until I went to the optician with the sharp stabbing needle pains in my eyes that she told me there’s nothing wrong with my eyes, and that it sounded like a nerve problem and I should go the doctor that I got concerned. Well, I did and when I told him about the tingly sensations as well and all the other things I’d explained away, he didn’t hesitate and referred me immediately to a neurologist. Shame a referral doesn’t mean immediately! I feel very alone. My husband says he understands, but I think he thinks I am imagining it all. I just need to know I’m not alone.
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Your not alone please contact me via my email if you wish to talk I have simple symptoms Reguards Lotusflower12345…
Hi Karen, I have only joined this web site today & therefore this is my first reply to a post, The reason for joining is that I have been diagnosed with Fibromyalgia since 2008, however, I believe that I have had a miss diagnosis due to some of the symptoms that I have developed over the years. I have also been recently diagnosed as having Epilepsy due to having had two huge seizures over the last few weeks. I originally had a seizure back in December 2012, I then had an MRI scan to see if this showed any reason as to why I had had the seizure, which it didn’t. However, it did show that I had had two minor strokes, this was reported as " a couple of lesions to the left thalamus & left lentiform nucleus which are probably small lacunar infarcts. I was then prescribed to take 75mg Aspirin a day. I then went right up to August of this year before I had another seizure, I then had to have another MRI scan. The day before I was due to have the scan I had another seizure. The MRI scan did not show any changes from the first scan that I had in 2013 so I was diagnosed with having Epilepsy, for which I am now taking Lamotrigine. However, I have recently received another letter from the neurologist to say that the areas that showed damage & had been reported in 2013 as having been the two small strokes was now being reported as "The previously identified T2 hyperintense foci in the left thalamus & basal ganglia do not show any peripheral flare hyperintensity. These appearances are suggestive of perivascular spaces rather than lacunar infarcts. My question to you is would the neurologist have to ask for a specific type of MRI to be able to diagnose MS or would the neurologist be able to pick up on MS no matter what the scan was for?
I hope you can answer my question if not would you recommend that I go back to my GP with the information & list of symptoms that I have & insist on having further tests.
Kind regards
Bev
RIZZZOOOOOO is been a long time, (I am TomC who played guitar for you all)
But thank you so much, This truly is amazing info and very much appreciated and welcomed.
You are a Star!
I had my first scans in 2010 in which I have 3 lessons 2 on the top of my brain and 1 in the bottom where it meets my next I have numbness in my hand still that travels up my arms. I’ve been back to see the neuro today as I’ve been having blackouts and blurred vision also been very tired. I’ve not been able to work for the past year due to this. I’m really struggling don’t seem to get any support I’ve not been diagnosed yet as they are still saying I’ve only had one attack so won’t do anything to help me. I asked today if I could have my scans repeated and was told no. I was basically told that unless I have an attack that imoiblises me then there is nothing they will do I’m thinking of getting a second opinion can anyone give me advise I’m at breaking point xxx
i do not have sensation in c1/c2 ms since 2010.recent repeat mri brain and spinal last week.what will spinal mri show in realtion to c1/c2?no sensation to pinprick at consultants meeting?
Hi, I wonder if anyone could clarify something for me regarding pain? I was in hospital for 9 days with possible MS symptoms. My tests have shown no lesions. But for the past two and a half months I have had pins n needles in my arms and legs, face. Sometimes shooting pains and pains across my chest. I have suffered for the last few years with dizziness, blackouts and tiredness which comes and goes and usually lasts two to three weeks. This time it has lasted longer with additional symptoms such as stuttering, mixing up words when I speak, dropping things and numbness. I finally saw a neurologist today who didn’t have my hospital notes (or any other info). But he said it can’t be MS because I have pains on both sides and someone with MS will only have pains on one side. He said to take a high dose of amytriptline (sorry about the spelling) which would result in no driving or working (I don’t get paid sickness pay as I have already been in hospital last month). My question is, is he right about experiencing pain only on one side? So confusing. Thank you.
Hi, have been convinced now by doctor, said seizures due to my body not being able to cope with the pain, have slipped disc. I’m on morphine, but had a seizure last week, I thought the morphine just covering pain! So thought no more about it! The last few months I’ve been falling, not tripping or slipping, but just dropping? I find that it’s not all the time, but I know when I can’t trust myself to go up the stairs etc! I Had put ms completely out of my mind, as doctor said no, I didn’t have ms. I had two brain scans about15 years ago to rule out epilepsy! I’ve got some sort of throat problem. My voice has been hoarse for last six months, they did a procedure to see if there was anything to take a biopsy of, but, nothing, ENT are doing a cat scan next week for my throat, would this show any signs of me if I do have it?
I’m so out of control of my body now, the morphine hides the pain, but I don’t know when im going to lose control of my limbs, or do you agree with the doctor, I don’t have it?
Any opinion would be appreciated!
Great post! You really know your stuff !!!
Suzyj
Thank you .really interesting I like all the detail …explained everything in a way that could be understood excellent
sue
Hi everyone I’m new on here off to see the GP tomorrow and recommendations for neurological pain? Cheers john
I have just come back from the hospital for head scan results. …doctor said he doesn’t know if I have ms !! I have to have another scan January 17…apparently im to old at 49 for first symptoms of ms. I have high sensitivity in results. .but doctor thinks that could be because of my age !! Getting fed up with all this already. If anyone can help it would be most appreciated.
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An excellent read, great explanations, expressed in a digestible format. brilliant.
Thank you.
Mick
John Brookes
have you got a neuro or ms nurse?
these people are best at naming which neuropathic painkillers.
the GP will follow their advice.
carole x
Sharon 1966
rubbish that you are too old.
i was diagnosed the week before my 50th birthday.
if you haven’t yet been referred to neurology, get pushing for it.
carole x
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@ Sharon:
Too old at 49? Carole is being polite - that is a load of complete garbage.
My onset symptom was Transverse Myelitis - at 68.
The formal change to MS was at 69.
And I have been told (quite sincerely) that nobody gets MS that late in life.
Unfortunately, nobody thought to inform MS.
Geoff
2 Likes
Hi just wondering if anyone can advise? I have had an mri scan and initially was told by my neurologist that i had two areas of high signal in the periventricular regions and that was suggestive of demyelinating disease only to be told in the same letter that i did not have ms. At this point my gp wrote to my consultant and asked for clarification as they are both the same but i was then told in the 2nd letter that i only had 2 lesions and that 10 or more would only confirm ms. Can anybody please offer some advise as i need to know if this is something i need to push with my gp/consultant.
Many thanks, Helen
Hi Helen,
Sorry to hear you are having a difficult time in finding answers, a feeling im sure most people here can relate to. This is a very old post so you may het more responses if you create a new post of your own. To diagnose MS can be a long and difficult process as everything else has to be riled out and is a diagnosis made by exclusion,if that makes sense? Have you had a lumbar puncture? They are not strictly necessary for a diagnosis but can help in cases that are ambiguous. In order to dx MS the McDonald criteria have to be met, i will attach a link. What your consultant has said, to me, does not make sense. Have a read of the link and create a new post. I’m sure someone with more knowledge than me will be able to offer more insight. Hope ypu find some answers soon.
X