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Hi there I'm 29 and for the past five weeks I have been really unwell. Flu like symptoms, episode of double vision amd lose of sensation on my right side which cleared, then my right eye vision started to deterorate .. feeling extremely tired aching amd really bad headaches amd pressure. Finding it hard to do anything. Also not been eating well . I was put on steriods and my right eye vision isn't as bad now. I had a mri which shows Demilanation patches of nerve damage . Amd bow I had to wait up to 6 months to see a neorolagist for a diagnosis amd treatment :-/. . I feel so unwell . They said to Try exercise amd think positive could have been worse and how I'm healthy young woman amd will live a long life but feel so unwell and so worried if anything else happens especially as iv got two young girls aswell. I'm finding it all extremely hard .many thanks

6 months? 18 weeks is the nhs limit. Have they ruled out cns infections? Keep going to your GP if u get any new symptoms.

Thank you so much for replying to me iv been so scared with all this helps just you replying. They said 6 months il look into that il go back to the doctors. What's cns infections? They have done some bloods but they always normal. I'm just struggling at the momemt it's all new to me amd feels like they just leaving me to it and all I want now is a proper diagnosis and treatment :-/. X

Oh central nervous system infections they haven't said anything about that they have done some bloods but not been told anything else just what mri says amd my symptoms x

Hi, looking for some advice.

My partners apparent MS attack was just over 2 years ago, she experienced some numbness mainly to one side of her body, and fatigue. This lasted about 2 weeks, however only about 2 days of it was fairly bad. She hasn't had any other symptoms or attacks since. She had an MRI done back then and 2 lesions showed up on her brain but nothing on her spine. 2 years down the track another MRI was done recently as a follow up and another 2 lesions has come up on the brain but no lesions or abnormalities on spine, however no attack/relapse. The neuro advised it could be MS.

She does suffer from constant headaches/migraines, and blood results showed she's low in iron.

Does this sound like MS?

Thanks.

Hey start a new thread

Hi, I've been experiencing problems for a few years now but because I fractured my spine many years ago the drs was constantly putting my problems down to my #spine. I got up one morning a month ago with pins n needles that are constant n feels like I'm walking on stones, so I saw my gp who took lots of blood tests & because my legs went into a bad spasm n tremors she called the hospital & I was then seen by a multiskelatol Dr who sent me for a complete mri scan skull to tai. This Dr phoned me 7.30pm on the Saturday evening & started telling me the results was not good n also said that my mylene sheath had gone leaving my nerves exposed. So far 2 drs have mentioned MS but I have to see the neurologist urgently. I'm experiencing so many problems which are pointing to MS :( I feel tot8 alone at present & very unsure & obviously not in control of my body n won't be till I am told officially. Sorry about the messed up message but perhaps I just need someone to tell me all will be ok. X

Hey u should start a new thread

Sorry but I'm new to this & don't know how to start a new thread. X

You know when you are on the forum there is a button above the numbers saying "new thread" you just click on that. More people will see your post that way

Averill01

Your symptons are not unlike mine and I have been diagnosed with RRMS. The diagnoses by MRI takes a while as they do MRIs about 3 to 6 months apart to determine if there is progression of the condition. In meantime your GP should start you on an intensive dose of Vitamin D as it is thought to reverse demyelination of nerve cords.
Please don't despair. MS is now not the life sentence it used to be and it is not fatal.

Hope you get sorted soon.
Regards

Anonymous

I am new to the site and the diagnosis. Apparently I have had the MS trait all of my life, but just was diagnosed at the age of 50, due to aggressive symptoms. I have had to adapt to a whole life change. At least for now as I learn more about MS. I'm so afraid to do anything. I'm thinking that I need to get a MS Specialist, I have only been working with my neurologist

blurred vision

I feel i desparately need abit of advice from others going through the same issues.
2016 out of the blue i started getting really horrible headaches, i felt dizzy, couldnt think straight.weeks later andstill havingheadaches i went to see doctor, i was given medication over 2 years covering pain killers to anti epileptic drugs with no relief. Summer 2018 i suddenly had numb legs fromknee down, now the numbness has engulfed my whole body even my face. I now get spasms which can be quite agressive at times waking me in the night, I spend my day being permanently exhausted. Today i still have a permanent headaches and dizziness and vertigo, with numbness. Ive finally seen a neurologist and now ive had spinal mri and having a mri onmy brain tomorrow. I just feel no one understands me, or what im going through because you cant see whats happening.

Hi Lucylu,

Hopefully, you've had the results to your mri spinal and brain scan and a better understanding of your symptoms based on your neurological results then from there what support you need in a care plan.   I recently have more intense symptoms of numbness, pin and needles similar to you particularly in my legs, fatigue, eye problems, sensitivity to cold;  I am going for a blood test next week.   Apparently, I read that there is suppose to be a way of testing for early MS through a blood test to start with but I am not sure if this is the case.

Lucylu
As you have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

Lucylu
As you have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

Lucylu
As you have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

Lucylu
As you have will have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

Anonymous

Lucylu
As you have will have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

Anonymous

Lucylu
As you have will have had 2 MRIs by end of this week am sure your Neuro will be able to come up with an affirmative as to whether or not you have MS. Not all the symptons you describe are typical of MS and no doubt that is why both spinal and brain MRIs are needed.

Hope you get answers soon.
Regards

I hope you got answers from your neurologist, I have just had my lumber puncture and blood test. I am now waiting for the second MRI in which I asked the doctor when that would be . She said on my notes that it could be in March. I am now waiting for the MRI and the next appointment with the neurologist. Which is in April, still waiting awhile.

My story started October 2017 when I started seeing double, it was February and my optician,  that I told about my vision. Everything came from there.  I was looking after my dad as he was very ill and I was too busy to go to the opticians, my father sadly passed in January and was cremated in February it was then that I asked about my vision. 

Kay

My first symptom was the tingling and numbness in my hands and feet. It didn’t always affect all of them, and the numbness seemed to be an issue more after the tingling, but sometimes occurs without the tingling beforehand. Then I began to feel like my legs were bogged down. I run about 5k a day and so this symptoms has been significant because after a run I feel extremely run down and exhausted. Then I developed vertigo and on some occasions double vision. Cognitive fog has been a steadily worsening symptom as well. I initially chalked it up to stress or lack of sleep. Then I developed episodes of reddening and extreme pain and heat in my hands feet and face. It feels as though I put them in scalding hot water, and is alarming in appearance when it occurs. I also have tremors and reduced grasp in my right hand. My reflexe in my left leg is significantly less than my right. I stumble a lot now, and have difficulty finding my words. Oh and this past year I’ve developed urological symptoms, which is embarrassing and awful to deal with in public, but really makes me feel scared about how rapidly my symptoms are progressing lately.

 

-Britt

Hi Britt,  have you seen your GP, had a recent blood test then from there to rule out anything then referral for MRI scan and/or a

neurologist so you can get a diagnosis to put your mind at ease at least to know?  I would make a note of all the symptoms for when

you see your GP and anything new so you don't forgot anything that you want to discuss.  I can relate to the tingling and numbness

although I have sensitivity to cold which is difficult in this winter.

 

 

Eagle, I had blood work done. I have consistently had positive ANA with a titer of 1:160H speckled. So they are looking into RA and SLE as well. I have difficulty walking, a lot of stiffness and heaviness in my legs, which sometimes improves throughout the day, but most of the time I just try my best to cope with it. I had an EMG done yesterday, and I had one in the past as well. The neurologist said it does not appear to be a peripheral issue and said he is almost certain it is a CNS related disorder. I believe he put in the order for a lumbar puncture, and my MRI order is already in. I just want some sort of help soon because it seems like my symptoms lately are becoming much more intrusive and debilitating and they interfere with my work and time with my kids. As far as sensitivity to cold goes, I have never had that issue, do you experience Raynaud’s phenomena? The heat and sunlight seem to be factors that greatly exacerbate my symptoms. I live in California, so it’s rough for 8 months out of the year. :,(

Anonymous

When I sae your reference to Raynauds I was thinking of a friend that is being treated for it and then few years back was diagnosed with scleroderma which was an autoimmune disease causing over production of a protein in their skin which then becomes totally inflexible. Scleroderma also affects soft tissue and can be very problematic if it gets into lungs and heart. This patient up to then always had good health. Don't panic however it other symptons all point to some form of MS.

I have RRMS and somedays feel great but on others feel wretched with pains in back and lower limbs. Still try to work 5 day week but most days feel exhausted by 2pm.

Regards

Hi all ,I was newly diagnosed last yr after 2 yrs of feeling generally unwell which started with extreme tiredness ,anxiety then low vitamin D and started on 6 weeks of high vit D but week 4 became increasingly unwell .After several GP apt in 1 week (and told I had anxiety)and 2 A@E presentations due to acute back and coccyx pain I had 2 MRIs of my back and told I had a slipped disc and given analgesic.Then I lost my balance and had very odd sensations in my head which were so frightening.

I was then referred to pain clinic and saw a doctor who listened to my symptoms and checked reflexes which showed abnormalities he referred me for full brain MRI which came back with lesions in my corpus callosum and others in left hemisphere ?

I  have now been formally diagnosed and nearly 2 yrs on have dates for march to have Ocrevus infusions .

My symptoms now remain intermittent hands ,feet,legs up to knees pins and needles and numbness,the worst is intermittent urine retention but I now have a  knowledgable continence nurse who has scanned my bladder several times( and yes its not working as well as it should )but she has taken time with me and made me feel comfortable to talk about bladder and bowel issues which to me is very personal ,frightening and embarrassing .She is due to come out to me at home next week to teach me how to self catheterise in emergencies (most time im ok)and this will help lesson my anxiety when this happens.

Sorry to go on but I now really believe that MS is still so unknown even some GPs and medical practitioners need to be more updated and aware .I am sure that I have had MS for some yrs and misdiagnosed.

For those newly diagnosed dont be afraid to ask and persevere with your GP if you think you may have MS ask for a MRI and if refused or ignored ask for a second opinion.

 

Anonymous

Hi everyone. Hope your all ok. I'm new to this site. I'm 35 I've just this last week been referred to a neurologist as I've been suffering on and off with tingling in my hands and feet on and off mainly at night but be coming more often along with hot sweats to the point where my partner can't stand laying next to me and beaches and tiredness. I haven't been to the docs before as I've getting investgaited for bowel issues and a horrible sharp pain I get under my left ribs. I've had colonoscopies, endoscopy ct scan and ultra sound but everythi g has come back clear i also suffer with neuralgia which in the last 8 months seem to be 're occurring more often than once a year. My gp said he wasn't too concerned about my neuralgia but more my other symptoms and wanted a neurologist to see me however Didn't say why. I have family in medical and it was them that suggested I see my gp with my neuralgia and tingling as could be linked

Hello,my name is Rob,I've been suffering since 2016,I've had every known symom there is,my last bloods shown severe vit d deficiency, for the second time with low foliate. Also for the second time,I haven't slept properly I 3yrs due to my spasms, an frequent trips to the loo,my legs went,an had a focal motor seizer in 2016,was diagnosed with sleep apnea 2017,and dementia 2018,can't believe I'm gonna say this but had no sexual motorvation for over 3yrs,I'm lucky I have a loving caring Mrs, who hasn't left my side,my fatigue an my mobility,spasms an bowel an bladder,and sexual dysfunction has never gone away,I've just had about of trigeminal neuralgia,which my dentist confirmed, but had like a small seized ,so I've been referred to secondary care for treatment, and I'm due to see the neuro opthamoligist on Thursday,my double an blared vision is back with pain in eye,an different pupil sizes at times,hip back,neck pain,internal tremors,stiff hands wrists ankles and feet,to be honest with everyone I could scream,that's all for now,this has took everything to do,an it's only half of what I've been and still going through, be back soon,thanks to everyone who read my post.x

Hi there about five months ago I started getting double vision feeling unwell and couldn't feel hot or cold down right side each of those things lasted about two weeks . When my double vision went I started losing vision in right eye I had optic nephritis. I was eventually put on steriods. I was unwell sick intense flu like symptoms head pressure was terrible. Plus my anixty has got extremely bad. Still too this point no diagnosis. I had a mri showed a few small patches of demyelination. Had a chest xray which was fine had so many bloods which are all fine had a lumber punchure which came back fine but I have rwally bad fatigue and extremely exhausted all of the the . Can hardly keep my eyes open. I still feel really unwell most days and anixty is terrible now. They are putting me on something for fatigue amd pain. And another mri in may to compare to last one in November and take it from there. But consultant has said it looks like mild ms as he has ruled out alot of other things with those tests. It's been the worst time ever. Iv had to push amd push to get to this point. It's horrible and thw unknown makes it worse. I have just turned 30 with two young girls amd husband amd all I want is to feel fit anough to do things again. I have ok days where I don't feel as bad and I hope these tablets will help x

Here many users are sharing their experiences about MS, it is nice that we are here in a thread and discussion about our problems. Thanks

Hi there,

 I was told a few years ago that a temporary loss of eyesight in one eye over six weeks was probably a sign of MS but that no-one is diagnosed as having MS until they get multiple 'attacks'. Recently, I had orbital pain for a few weeks in my other eye and have also had a period of having pins and needles, which I didn't realise was a symptom at the time.

I have an appointment with my GP on Monday and will ask to be referred back to the Neurology department.

What symptoms have you experienced?

Best wishes,

Valerie

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