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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.

 

I take the same medication as you. I am working, and get no help at all, I have to pay for my medication, and this really pisses me off. My memory is going and find it hard to concentrate and I am making mistakes at work, I am going to end up with the sack at this rate. I drop things, cant find my words, type back to front. This is affecting work so much now, I can get help at work, but how long are they going to put up with me, and I am agency at the moment. I need to see my doctor, I have told him about my memory and things and he said we are all like this with getting older. No its not, its the MS.

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

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.

My daughter was diagnosed with MS when in her 50's, so 49 isn't too old.

I have MS

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

@ 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

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

I have MS

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

 https://www.mstrust.org.uk/a-z/mcdonald-criteria

Thank you for commenting and the link :) as you can probably tell im new to this so i have no idea what im doing! No lumbar puncture as my neurologist says its not needed so that may be a good sign? I dont know x

You most definitely need to push for answers. You are a paying customer and have the right to get the correct information.  You can have MS with 2 lesions with other symptoms.  

Very useful this info on the brain.

I had symtoms 8 years ago..lumber puncture was done..nothing found! But 2015 after optic neuritus in one eye it was looked at again.it takes long time to get a firm diagnosis .its a worrying time not having answers too.mri s done finally showed some white legions so no doubt then for me .i think no lumber punct does seem a posotive sign as they do it to rule it out

Tp all you new folk - you are sticking new queries onto a "sticky" - which is an information post.  As suggested above, do start a new thread to get more answers,

Note that a lot of "experts" are abandoning the McDonald Criteria for first diagnosis.
In the MS, a VEP (Visually Evoked Potentials) test confirming Optic Neuritis is enough for a Dx of MS.
This can result in quicker treatment (like a DMD) than going the McDonald route.

Do note that a Lumbar Puncture can only confirm, it should not be the only diagnostic tool.
Of course you can have symptoms (pain, numbness, etc) on both sides - this is a good clue to Transverse Myelitis which is usually a precursor of MS.
You may be left with a symptom on one side - dropped foot is typical - but that could be month or years down the line.

Geoff

I have a few questions...i was diagnosed with Addisons disease 2 weeks ago. I have some things that seem more like MS though. Random bouts of inability to walk and tremors when I get even a slight chill. A lot of symptoms overlap with my type 1 diabetes and RA. Like neuropathy, not sweating at all, fatigue, insomnia the list goes on and on lol. Anyone else here have these issues?

Hello

A close family member who is only 18 apparently might have MS. I am really shocked as I thought (and through the various web sites) that MS diagnosis is only made after eliminating other diseases/conditions. His B12 is low and he has had one MRI scan of the brain and is having another one on his neck very soon. 

I have heard that a vegan diet but with fish (figure that one out!) is a good way to help. What could we do to give him the best chance of coping if it is MS?

My greatness concern is that he already has special needs; its seems so cruel to have even said anything until they were sure. Is this standard practise? 

Advice or pointing me to previous posts would be most welcomed.

Thank you.

Hi RTLF - your correct about the diet - check out https://overcomingms.org/

It works and although not clinically proven is verified by medical evidence.

all answers to any Qs should be found on the website and its forum.

all the best to you and your family member x

hello everyone, today I finally received my diagnosis from the neurosurgeon at the hospital. He said it was MS , to be honest that was a bit of a surprise to me, I wasn't expecting that, I was and I wasn't. Thinking about it now it kind of makes sense, he thinks that maybe its been undiagnosed for at least ten years, thanks to the MIR scan, he showed me all the pictures from the scan and the decay to the nervous system, he did say it was difficult to read but you can see that there is damage there, I am happier , if there is a word to describe this then I AM HAPPIER knowing that i have a condition I can work with,I didn't know this before. This is all very new to me as i was only diagnosed yesterday 05 September 2017. At the moment I can only walk with the use of crutches, my balance isn't very good, I have a tendency of falling over a bit but I am only walking about without my crutches only in the house.  Also I told my local Gp aout my new diagnosis and he signed me off work for 3 months. He was very apologetic to hear about my diagnosis. Like i said it's all new stuff  for me. THe first thing I did was come here. Its going to be a new adventure for me I am sure. Doctor seems to think it has been undiagnosed for years. 

Hi Gary I'm just going through the same thing I got rushed to hospital with symptoms relating to a stroke once in hospital & after having tests on the ward I was told I had gone through 2 TIA small strokes I was then given a neck scan to check for blockages in the neck & then placed on Clopidogrel blood thinners & 40mg Atoravastin & placed under a stroke consultant for follow up appointments .in the meanwhile I began to get worse dragging my right foot dropping items with my right hand & pins & needles in my right side of my face ..my visions very blurred although my recent eye tests say my vision is great . I'm very fatigued all the time. I have pins & needles in the top of my head & my whole right side of my body feels strange ..I've become very confused & can't swallow properly ..which is strange because the swallowing started before the strokes .. I'm under a throat specialist for my throat ... on my last visit to  my doctors I had to see  a  different GP  as my regular GP was on holiday he looked at my notes & said all your symptoms relate to MS I'm surprised no one saw the link . I would just like an answer so  I can get on with my life, I feel so alone in all this that's why I have come on here to talk to people who would understand did you have an lp ( lumbar punch ) to get your results & answers . 
thank you Bevsie x 

 

Hi, Gary,

Don't be discouraged, My daughter had 17 lesions when she was diagnosed.  So she had had MS for years before the diagnosis. It has been 12 years since her diagnosis, and she is doing great.  Exercise, a healthy diet and her meds keep her in remission most of the time.  Best wishes 

Hello, Karen. My name is Margaret. I have had different problems throughout the years related to excessive fatigue, remarkable inability to tolerate heat, numbness in my left hand, fingers, left leg, and hip. I have urgency too, as well as constipation. Too, depression, weakness in my arms and legs bilaterally. I get spasms in my left hand, fingers,both feet , legs, I have a vibration like feeling down my back and into my legs,etc. my eyes have also on two separate occasions demonstrated with aching with movement, and too, diminished color perception. My MRIS over the last thirteen years, five of these have shown firstly just a few peri ventricular plaque lesions several years ago. My latest MRI this past September showed in excess of fifteen plaque lesions on my brain, several of which the radiologist stated presented as being perpendicular to my lateral peri ventrical areas of my brain. The radiologist stated that there though were not presently active lesions. My neurologist has had me on Copaxone Injections since 2005. I also take Ditropan for urgency, a stool softner, per constipation, Baclofen for spasms, Neurontin for the vibration like feeling, and I take Provigil for fatigue. My Neurologist diagnosed me based on an EMG, that showed Slowed Firing Rates, Hyper Reflexia bilaterally of proximal / Distal Extremities, Hx. of Optic Neuritis, x 2 episodes, a Spinal many years ago that demonstrated Bands, and now five MRI Exams which show High Intensity Foci in areas specific to a Diagnosis of MS, with Multiple Sclerosis. He has kept me on Copaxone per the fact that I haven't shown tremendously increased areas of plaque on my MRIS, combined with the fact that I do have symptoms, yet not new symptoms of recent years. Does this seem like a proper diagnosis, testing protocol and too, treatment protocol to you, Karen. Thank you. - Margaret O'Neill. P.S. He said other things about my symptoms and too MRI Results that I do not remember right now, Karen. 

hi ive just had a letter dont really understand. short version is. there is a minor loss of intervertebral disc hydration throughout the lumbar spine and there are some focal dots of increased signal hyperintensity in the posterior annulus at l2/3 l3/4 and l4/5. which may reflect an annular test. any ideas appreciated x

Im not diagnosed yet. I have demylanation in several places in head including corpus collosum. Does this mean i have ms?

THANKS VERY MUCH FOR ALL THE INFO ABOUT THE BRAIN  VERY HELPFUL. THANKS AGAIN.

My 15 year old had an mri after suffering from a continuos headache for nearly a year and a half now! she has dizzyness, tremos, fatigue, a swinging gait, confusion, very hard to sleep, not eating properly as feels sick, pins and needles in her fingers and her left side goes numb sometimes, the MRI stated that she has a 6mm well defined focus of T2 and FLAIR signal intensity in the posterior part of the right thalamus, does this indicate MS

Humans have evolved to have a lot of brain matter, so the only way to fit it all into the skull is to squeeze it together, like squishing up a piece of cloth to fit it into a tight space. This means that the cerebrum has lots of folds in it. The bits that go in are called sulci (a single sulci is called a sulcus) and the bits that go out are called gyri (a single gyri is called a gyrus) and they all have names. [Mammals that aren’t as intelligent as humans have smoother cerebrums, with fewer sulci and gyri, if any.]

Anonymous

Hi all,
Just after some advice I have just had my scan results back and didn’t really get any explanation from my neurologist he just referred me on to another
The report reads
Lying adjacent to the body of the lateral ventrical in its posterior margin is a flame shaped area of T2 signal
There is a similar but smaller area of signal change lying adjacent to the left front horn.
The two areas of high signal within the brain have features very suggestive of inflammatory demyelination
Any idea at all what this means, iv just got this price of paper (MRI report) and a referral and I’m worried, does anyone have any idea what it all means?
Xx kita

Thank you I'm new to the group & my MRI was today, I'm still a little lost in all this as my GP sent me for an MRI in the hope of ruling out anything sinister & told me I could have MS this has come as a total shock however reading this post has given me an insight as to what MS is
thank you Karen
Bevsie X X

Hi, do you know if you have to have an MRI with contrast to show MS lesions?

Hello,
I am trying to get some additional information while waiing for the neurological appointment after MRI scan for my husband. He is 36 and he has experienced dizziness and headache for few days. And now scan is saying that he has 5 round and linear white metter hiperintensities in frontal lobes, 4 on the left and the largest measuring 1 cm is high in the right frontal lobe. Radiologist suggested demyeliation process and possible MS.
His symptoms are gone now and he is feeling good.
From your experience, is this clinical picture typical for MS?
Thanks in advance
Olga

HI, Olgaka, One form of MS is relapsing remitting .  That is the kind my daughter has. You have symptoms then you don't. She is in remission most of the time.  I'm not saying your husband has this, just giving information.  Best of luck      

I just got a notification, actually three notifications that there were new posts specific to August 2nd, 2018. I checked though and could not locate the new posts. Thank you, Margaret.

Hi, I've just got my MRI report back, all clear which is great but I am still no nearer any idea why I'm having symptoms.

How do I know if I've had the best MRI to check for lesions? My report says diffusion and head. I didn't have contrast.

Hello all, I know I'm a little late to post here, but I have been searching the Internet for weeks/months/years to find answers to my symptoms. I am 30 y.o female I have extreme right hand muscle weakness and tremors. I have seen so many doctors and none can tell me what is going on with me. I have racked up so much in medical bills I would just like some advice from other peers.

I have been told I have; right hand tremors, extreme muscle atrophy, ulnar nerve damage, right facial drop and the list goes on. 

My symptoms are not always there but when they are I have zero control of my right arm and especially my hand, it shakes uncontrollably especially when I go to do a task like grab a glass of water or try to point with just my index finger, I cant even hold a peace sign up with that hand, it has become basically useless to me now. It is beyond frustrating to be looking at my shaking hand with no ability to control it. I have started to notice that my face symmetry mainly my smile is starting to droop more on the right side as well.  I had an MRI about a year and half ago and was supposed to follow up in 6 months but I dont have insurance now, so I cant.  The MRI I had said the following(and of course I have no clue what any of this means I have been googling for hours trying to understand this again)... Any advice or support is greatly appreciated! ( Even if I am just being over paranoid :)

 

There is a linear focus of FLAIR/T2 hyperintensity and T1 hypointensity along the lateral margin of the left lateral ventricle posteriorly.

There is linear focus of T2 hyperintensity along the posterior margin of the left lateral ventricle, which is hypointense on T1-weighted sequences.

There are a few tiny foci of nonspecific FLAIR and T2 hyperintensity in the periventricular and deep white matter of both hemispheres.

 

 

 

 

I
Alltest, scans came back negative. I have all symptoms of ms. Where do i go from here!

Hi I’m new to all this !!
I’m wondering what my scan means
It says a few small areas of high T2 signal in both frontal lobes ??
Can anyone help me please

Anonymous

Here is my story so far...

About 2 years ago when getting my annual eye exam, my eye doctor said I needed to get checked for MS because some of my vision related symptoms were common with MS patients. He said he would call me with info and never did. I went back to him for my next annual visit and my vision had not changed and all went well. Then, in October something happened to my body. First, the I became incredibly sensitive to light, became faint, racing heart, muscle spasms in my back, numbness down my arms, weakness in my legs, severe headache, and pain behind my eyes. It was awful! I went to my GP who ordered bloodwork, an EEG, and an MRI. EEG was normal and my neurologist said it all sounded like a migraine, so ordered me a cat scan. That all came back normal too. So, then the eye symptoms would not fully recover and my vision changed and light sensitivity stayed at a low level. 

Then, in December, another "event"(migraine) or whatever the heck it was where all the symptoms came back, but at a lower level. It happened again in January. I went to my eye doctor and he saw cells in my eyes. Thinking it was possibly an infection he gave me prescription drops. They did not help. I went back and he saw something that made him give me info to a Neuro Opthalmologist for a full MS work-up. 

The neuro-opthamologist observed me towards the end of the January symptoms. She saw a thinning of the nerve in my left eye and said it could be evidence of optic neuritis or a birth defect. So, she set me up for an MRI with and WO contrast. I went and this was what was reported: "There are no significant intracranial white matter lesions. A solitary 2 mm focus of increased T2/FLAIR signal intensity in left anterior parietal deep white matter which is nonspecific. there is no MR evidence of intracranial demyelinating disease". They want to repeat the MRI in 6 months. Should I rule out MS in my mind and pursue tests for other causes of my symptoms? 

Anonymous

Hi - I have been getting some tingling in the right side of my face so I had an MRI and am wondering if you feel the following could indicate MS?
I'm a 66 year old male with no other symptoms: "Two minute foci of white matter T2 hyperintensity are seen in the right parietal lobe on coronal image #13 of series #5. No other white matter signal alteration is demonstrated".

Full MRI report:
History: 66-year-old male with numbness in right side of face
Technique: Multiplanar, multisequential MR imaging of the brain was performed without intravenous contrast. No previous study is available for comparison.
FINDINGS:
Echo series demonstrates there is no restricted diffusion. The corpus callosum, sella turcica, pineal region, and craniocervical junction demonstrate no anatomic abnormality. No intracranial edema is demonstrated. Two minute foci of white matter T2 hyperintensity are seen in the right parietal lobe on coronal image #13 of series #5. No other white matter signal alteration is demonstrated.
There is no evidence of intracranial mass. The ventricles and sulci are normal in size. No extraaxial collection is seen. The basal cisterns are patent. There is complete opacification of the right maxillary sinus with findings consistent with severe mucosal thickening. The possibility of a polyp cannot be excluded. Mucosal thickening of multiple sided ethmoid air cells is present and a small mucosal retention cyst is seen in the left maxillary sinus. The mastoid air cells demonstrate no abnormal fluid.
IMPRESSION:
1. No significant intracranial abnormality is demonstrated.
2. Opacification of the right maxillary sinus is consistent with severe mucosal thickening and the possibility of a polyp in this region could not be excluded.

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