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
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.
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 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.
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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. :,(
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 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
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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
Wondering if the whole weird mix of things I have could be MS. The big three are some pain behind my left eye with occasional headache, needing to wee often, and some spasm like pain in my upper right arm. Other things too though like occasional pins and needles and slight cognitive stuff like not being able to remember words. I mentioned my concerns to my GP and had my eyes checked at opticians ( all seemed OK) but GP didn’t really engage with my concerns around MS. I think he thinks I have mild depression and some health anxiety and so I couldn’t have anything else. But could definitely be some physical stuff going on in my opinion. Just don’t know what yet. Do you sometimes have to wait until things progress before you get a diagnosis I’m wondering? Watch and wait as someone mentioned?
Valerie Have been diagnosed with RRMS now a few years back. All started after back pain and then walking with a limb. Have pins and needles right down both legs, stiffness, and more back pain. Have little or no problems with eyesight and am on medication both for MS and gabapentin for pain relief.
HI there, I’m writing for my 17 year old son. He has been diagnosed with POTS (a form of dysautonomia) and ME/CFS for over two years now. Its been a tough journey getting to this point. However the past few months my son has complained of random tingling/burning/extremely sensitive areas of skin. First on his upper right back, then right thumb and index finger, same hand and more recently down his left leg. With POTS, the symptoms are fatigue, dizziness, headaches/migraines, brain fog and lots of other symptoms. However, bearing in mind his symptoms and his ‘I thought’ new symptoms. I’ve asked his GP to monitor him for query over MS. I have recently looked back at the diary I kept back in 2017- Oddly his first symptoms were intact, pins and needles in his hands and feet - legs and arms not feeling like they belonged to him - numbness in his feet - I’ve even written that he comments (back in 2017) that he was needing to use the walls to walk through the house - I must be honest, I’d forgotten all of this - but the more I read, the more I’m concerned. I realise you are not able to comment and help diagnose - but I wondered if anyone else here who has a diagnosis of MS, was originally diagnosed with something else first? I do wonder if my son has been given the wrong diagnosis with POTS, especially as the POTS medication really makes not a slight bit of difference to his POTS symptoms.
Thank you for reading 
Hi Everyone, Just trying to get people thoughts and help. I don’t have a final MS diagnosis yet but wanted some feedback. I have just given a short bit of background to my current situation but my questions are at the bottom of this forum entry.
I had a TIA or minor stroke in 2017 following that I had a number of tests, scans, etc, to determine the cause. It turned out I had high blood pressure, Type 2 Diabetes and I was defiantly over weight by about 3-4 stone. I had been feeling unwell before my TIA, unsurprisingly, but some of the symptoms carried on after medication and doing something about my weight (I managed to lost a stone).
The NHS found 3 legions on my spine, top, middle and bottom (yes just like the old TV show for those old enough) and after 6 months my neurologist said that very probably I have Multiple Sclerosis (MS). She asked me to keep notes on my symptoms (which I had been doing anyway) and maybe change my diet to help with my weight. which I have been doing.
I moved to a plant based diet which I have been on for nearly 6 months. there is no doubt the my symptoms have reduced both in frequency and intensity. I know this because of my note taking. I have lost another 2 stone over this time which I am sure has also played it part. however, the attacks or flares, as I call them, have not disappeared.
I flare (buzz or tingle) from the tips of my fingers to the tip of my toes sometimes. At other times it’ll be just fingers and/or toes. Quite often before the flare and sometimes after I feel anxious, sad and/or angry just very emotional for what seems no reason but most of all i feel very tired. At work I also find it had to think straight sometimes and can make simple mistakes with numbers, which is very frustrating as I’ve always been good with numbers.
Question. I have nobody who can relate to me on this whole thing. Is there some where I can go locally, just to be able to maybe ask some, what seem, silly questions and get understanding. My friends and family do love me but I don’t think they quite understand me or my symptoms.
Thanks, Darren.
Hello I’m new to this forum, I’ve had a number of on going problems ie fatigue, joint pain weakness, fuzzy feeling in my head ringing and tingling sensation numerous uti problems for a couple of years. I’ve had an mri and the report says multiple areas of abnormal increased signal in the cortical/juxtacortical and deep white matter bilaterally. I have been referred to neurologist and he did an exam tonok notes ie family health issues autoimmune diseases etc he had the report but no scan to look at as he had to request that from the hospital where the scan was done he say he will look at it and write to me with his findings. I have contacted secretary as 4 weeks have now passed she says he is on leave and is going to have a mtd meeting when he returns. 1st may. I don’t know what it is and I’m constantly thinking about the whole thing.
Catdui There should be a local MS Action group in your area. I had planned to attend but a nurse friend told me it is not for everyone and as many have many symptons it could become bit depressing.
Thanks Bracknagh.