Your first symptoms - looking back..

New diagnosis and before diagnosis
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Hello People,

I’ve not long found this site, i may or i may not have Ms. I’m waiting to see, but i’ve not been well for a long time. It must have been about 18yrs ago my Gp sent me for a kidney biopsy 'cos i was so tired all the time. They told me not to worry but still called me back every year to take blood and wee in a bottle.

I started to have double vision about 15yrs ago. I think it may have been there earlier, but i didn’t notice it as much until after i’d had the cataracts in my eyes done. I always say probably after the cataracts, i could see better, that’s why i noticed it. They’ve given me botox a few times, and i’ve had a couple of operations for the diplopia. It all helped for a while but then it slipped back. The operations they did were. There are muscles at the back of the eye, and they weren’t pulling equally, so i was put to sleep while he cut one. He’s told me he’ll do it again if i want, but if i can just learn to live with it. I go back there every 6mths.

When i was on one of my routine checks at the kidney department, i saw a different doctor and he suddenly said without any warning… take your pants off. And he started examining me, i was dead embarrassed, i hadn’t been expecting this. Then he asked … How’s your sex life !!! Even more embarrassed i said something stupid like, … well we’d all like more, wouldn’t we. After that they started calling me back for checks every 3mths. But nobody said why.

I noticed my balance when i was walking, it was as if i was drunk, about 7yrs ago. I had pains in my calves and asked my Gp about DVT, but they just fobbed me off. My walking and tiredness was getting worse and worse, i’ve fallen many times, the worse was down 8/10 conctrerte steps and off a bus, but also at home and just stepping off & on kerbs. Then my doctor arranged an MIR scan (next month). Still nobody said, we think this is what’s wrong. And i wondered what have wobbly legs got to do with my brain. Then by pure chance i saw a woman talking on Tv, she’d been for a MIR, and had so many of the problems i have, and she mentioned MS… MS. What’s MS ???

So i went to my trusty computer to ask Dr Google. And i found this site.

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What do you mean lesion on spinal cord ?

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What do they do for MS. I have debilitating low back pain , when I bend over to work at something it feels like I will break in half , I have the numbness in hands , feet, muscle spasms in legs, trembling legs, twitching eye lid, weird sensation on my skin hurts to touch (face). What do they prescribe for pain? I now take pregabalin for nerve pain. Help . Lots of other symptoms to many to name . Also has tavlar cyst on S2 nerve joint ! Help would be appreciated. Thanks

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Just got home from the hospital after having a scan. I must have only been about 15mins, all the nurse said was go and see your doctor in about a week. So phone and the next appointment is 10days, the 22nd. It’s a case of wait-and-see until then.

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Firstly want to point out I am no medic, but a 15 minute scan (assume MRI). Not sure what they can deduce from that? Very little in my opinion unless it is just to rule out other conditions such as arthritis, disk trouble in back, etc. My MRIs in general last 30 to 50 minutes and tend to be very thorough as they scan both back and brain. I also suffer from bloody awful back pain and joint stiffness and in terms of medication, I am on a drug called Gabapentin. Many on these forums declare it causes weight gain but I find it is only thing that controls my pain. Take 8 x 300mg tabs of it which is near upper limit allowed. Take over x3 times daily plus a tab for Vitamin D which yet unknown how but helps in treatment of MS (by the way I have RRMS). Hope u get sorted. As many on here also agree, MS is not easy diagnosed and don’t want to alarm but it can take a while. Keep your chin up we could have worse and best to get it right in the end. Regards

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It was only my head they did. A MRI brain scan.

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Brain they must be looking for lesions then to rule in MS. I had friend whom had Optic Neurotic pain for months and blurred vision but took em a year to confirm it was MS .

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So it could take a year before i’m going to find out anything !!!

My balance when i walk has been terrible for perhaps 8ys, and my Gp has just brushed it off. But the last year it’s worsened and i’ve had quite a few falls, so that’s when my Gp made an appointment for me to have a scan. He never said why, but i’ve been searching the internet and it seemed to explain other symptoms that are long going.

I’ve just completed a claim for PIP, so if anything is wrong i was hoping to find out before they call me in for a medical.

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Hi everyone! I’ll try not to make this post to long but I’m prone to waffling, so I’ll apologise now if this ends up epically long. So, some background… I was dx with hypermobility syndrome around 20 years ago, when I was ten or eleven. As far as I know, I don’t have EDS, so that’s something at least. Starting when I was about 22 or 23, I started to experience symptoms that I would describe as having a ‘very tired’ leg, like one of my legs just wasn’t quite moving as quickly and easily as the other. In my true style, I basically ignored it for a few years, putting it down to the fact that I literally was tired from working a job that had me on my feet all day. This continued for a while, once every few months I would have this tired feeling and I continued to assume nothing was really wrong as it didn’t affect me too terribly. Until I started feeling the familiar pains in my knees that resulted in my hypermobility dx. Off to pysio I went, but since I was a lazy 20-something with better things to do, I obviously neglected my exercises. Fast forward a couple of years to the week of my 28th birthday and picture the scene… 7:30am on a rainy, miserable, cold February morning and I’m walking to work. I now work an extremely stressful desk job and I’m looking forward to being off work the following week for birthday chills - hooray! About ten minutes into my walk, the old feeling of weakness came back, only this time much worse. As I carried on, my right leg got weaker and weaker. Being hypermobile, I couldn’t control my right knee from over extending backwards and locking up. I slowed down to a snail pace, all the while the rain is getting heavier and I’m getting colder, stiffer and more distressed. I started to cry, because I didn’t know what the hell was going on (and let’s face it, no one can tell you’re crying in heavy February rain) Rather than calling my mum to come and rescue me, I persevered on, nearly tripping a fair few times as lifting my right leg started to become nearly impossible. I eventually limped into work, thoroughly drenched and feeling properly rotten. For the rest of the week, my poor mum had to ferry me back and to everywhere because I couldn’t physically walk for longer than 10 or 15 minutes. She watched me walk up and down the hall, apparently it looked like my right knee was ‘snapping’ backwards. Off to the docs I go, who confirmed I was indeed hypermobile (well… yeah) and suggested referring me for an MRI as I was also experiencing some numbness to the leg, something I had experienced a few times before, but without weakness) Eventually, it went away as suddenly as it had started. The MRI never happened and I forgot all about it. I now know this was probably my first real relapse. Almost 12 months to the day, the exact same thing happened in my opposite leg. Back to my mum being my chauffeur for the week and another GP appointment. I was referred to physio, and duly I went to my weekly appointment and did all my exercise daily. Gradually the symptoms got slightly better until one day, walking to work again, I was in so much pain in my hip that I had to go home sick. My right hand had also started to develop a strange stiffness, particularly when typing, and I was struggling to carry two mugs of tea. I rang my GP and it was suggested I go to the musculoskeletal service instead and I might ‘have a bit of fibromyalgia’. I go back to my physio who agrees they probably can’t do much more at that stage and discharge me, supporting my GP decision to go to the MSK service and probably look at rheumatology. The lovely MSK doctor and a good look at my joints, confirmed no nerve damage and sent me on my way. This was probably proper relapse number two. This year, January. I’ve just landed a new job and moved to Wales before Christmas to FINALLY be wit my long-term partner. Feeling pretty good until the Beast from the East shows up. Thankfully, Llandudno has salty sea air so the snow didn’t stick around, but man it was COLD. Something also happened that I wont go into detail about, but it caused a huge amount of stress to myself and my partner. It’s still happening, and we’re still stressed, but on with the story… Walking to work one day in January, it happened again, only this time was far worse. I was at the point where I started to wonder if a zimmer frame was a viable option before you turn 30. I was finding strategic places where I could stop and rest whilst still appearing casual. I became numb from my right shoulder blade down to my toes. Back to GP, FINALLY get referred for that MRI scan (yay!) MRI scan happens on a Sunday, Monday afternoon my GP rings to tell me to come in. I couldn’t, since I now work in Wales and my GP is still back in England, so I went the following day. My GPs words - the results are highly indicative of multiple sclerosis - this was my third and worst relapse. I didn’t cry until I got home and even then it was only for a bit, because my symptoms had a NAME, and I wasn’t going crazy, but I wonder if this could have been diagnosed several years earlier if GPs didn’t focus on the hypermobile/physio aspect… Currently, the weakness in my right side hasn’t ‘gone’, it just picks and chooses when it’ll show up and sometimes it’s not there at all! Frustrating, to say the least…

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Long story indeed. You must have RRMS like me. Mine started after a I had pulled my back and I was walking lob-sided. I was trailing my left foot which was first picked up by my partner who pushed me to go to my GP. To cut a long story short took about 1.5 years to get a final diagnosis of RRMS. Like yourself I did not mop too much about it as at least it was a diagnosis. Am on medication for the MS which is slowing its progression and on pain killers for back pain which seems to stem from it but could be attributed to my poor walking style. MS is a funny beast. Some days I am fine but others feel crap and seems to be worst in cold climates; by the way lack of Vitamin D also is attributed to MS and I also am prescribed Vit D supplements so ask your GP for same. Finally, it is thought it lies dormant in our bodies for years before you have any relapses. Good luck

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Thank you I suspect RRMS too, the radiologist report gave me the semi-answer I hoped wouldn’t happen, but secretly knew it would. I have my first neurology appointment a week today and despite not being religious at all, I’m praying they don’t cart me off for a lumbar puncture - I am sickeningly afraid of needles!

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The elephant in the room im going to ask about may already been discussed in a previous forum but ile ask anyway Whats with the battle to get diagnoses!! for gods sake im sure the majority of us was bery quickly diagnosed at the start of our symptoms got a quick unfounded diagnosis of CFS and then symptoms get worse or new symptoms arise quick as that you then get told you have Fibro!! dos anyone have the aanswer? Have the medical world have bets on how many they dont diagnose. I am in the medical profession and seen manu miss diagnosis but we have come out the caves now and diagnose people on symptoms effecting their lives, not like any 1 of us would lie to get a lable of MS. Thankyou tant over

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Firstly the lack of NHS Neurologists so getting an appointment takes about 9 months here in Wales, even if your GP says it’s urgent. Secondly if you pick up some of the symptoms early they may not affect the Neuro tests like squeezing someone’s fingers and whether you can still walk in a straight line, at which point they tell you its nothing worrying.

For me I know myself, I know something is wrong whether it’s MS or not but I’ve got nowhere in 10 months except a handful of waiting list letters. One GP seemed to think a holiday would cure me but I’ve tried that twice and actually the travelling makes the symptoms worse for a few days. I think not knowing is worse than learning to live with the diagnosis.

Just my opinion from what’s happening with me.

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would appear by the time some of us get diagnosed meds would not benifit us! Just thought id put that out there

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Hi, I have been going to the doctors for two years now and I wanted to see if you guys can help. I first started having severe headaches and I went to the ER and they said I had migraines and they gave me medication for that. couple months past and the pain went away for a month or two and it came back and they sent me to a specialist. at this time I started getting nosebleeds ,shaking in my arms legs and hands, blurry vision, numbness in my legs arms hands and face and we also started noticing that my blood pressure was high. They still suggest that it is my greens but I do you have brain clot in my family on both sides and strokes.

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Hi can anyone give me their opinion on my story. I was diagnosed with fibromyalgia around 4 years ago and am taking amitriptyline, gabapentin and pramipexole. I have recently been diagnosed with spinal arthritis and cervical stenosis after suffering burning sensation in right arm and numbness and tingling in Right hand and foot, I also suffer severe neck pain and stiffness which causes severe headaches. Last year I had suspected optic neuritis which was never confirmed. The last dew weeks I have had a really a tight painfull feeling around my chest, I was looking this up on google and came across the ms hug, I am concerned now but don’t want to run to my gp without good cause. I would appreciate any thoughts.

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Hi, Im new here. I have an appointment with my GP soon and have written this as I find it difficult to express myself. I am almost certain that I have MS and would be relieved if it was diagnosed. However I am aware that Dr’s do not like giving this diagnosis just from previous experience. However, I know that I have been experiencing symptoms very similar to MS and would be so relieved just to hear a diagnosis as I think I am going mad now. Please read the following and see if you think I am on the reight track. I’m aware that MS is very complex and the difficulties in diagnosing it. but I am getting to the point where it really is affecting my mental health. Age 15: Shingles in left side of head. Required hospital admission. Age 19ish: Unable to pass urine, loss of feeling in right big toe, spasms and severe sunburn feeling in both legs. Several neurological examinations, lengthy hospital admission. Some discussion regarding possible MS. Diagnosis of Transverse Myelitis. Treated with steroid injections. Age 19 to current: Same sunburned feeling in different parts of body i.e. legs, arms, groin, anal and genital region, pain when passing urine when in genital region. 1999: Diagnosed with type 1 diabetes & recognised as autoimmune disorder; led to several years of high volume insulin injection i.e. full pens of basal/bolus and high weight gain. Onset of neuropathy symptoms in feet shortly after. Onset of depression/anxiety and later required medication. First DVT shortly after. Onset of sleep apnoea required to use CPAP machine. 2000ish to current: Several episodes of cramping and muscle spasms, mainly in legs (most severe in shins) and in hands/arms. Some query re type of diabetes but after episode of DKA & hospitalisation due to blood sugar being “off the scale” of monitoring machine. Confirmed as type 1. Symptoms of chronic fatigue commenced shortly after. 2008: RNY Gastric Bypass led to severe weight loss i.e. 10st in 1st year. Stopped taking insulin, re-diagnosed as type 2 diabetic. No diabetes medication required for several months but intermittent medication required since and to current date, both oral and insulin injections. Continuation of chronic fatigue and depressive/anxiolytic symptoms. 2009: Onset of alcohol dependence after several major disturbing life events and heavy drinking due to stress, lifestyle & chronic fatigue. Diagnosis of Thrombotic Syndrome after severe period of DVT like symptoms. 2013 (ish): 3 years abstinence due to use of Disulfiram (Antabuse). Started to work as volunteer to help with references. Onset of worsening eye sight and hearing. Started with tinnitus in right ear (hissing sound). 2015/16: Returned to paid work after period of slight improvement. However, continuation and worsening of fatigue, neuropathic/sciatic symptoms and depression/anxiety. First noticed bad hearing problems and diagnosed with hearing aid treatment. Hearing has deteriorated since and now have bad hissing in right ear. Several occasions of severe sciatic pain in left shoulder up to date. 2017: Worsening of alcohol use/dependence. Led to dismissal from work. Several fractures to ribs, shoulder etc due to falls. Onset of plummeting blood pressure on standing, leading to passing out. High degree of immobility due to inability to walk and feel feet leading to further falls (not only whilst using alcohol). Still continues to date despite cessation of propranolol. Admitted to Bewerley Croft (transitional housing unit) due to inability to cope & look after self. Continuation of sciatic issues in shoulder and worsening of supposed neuropathic symptoms in legs and feet, also 2 further DVT’s, last suspected in both legs. Use of walking stick now required to walk small distances. Noticed what was previously thought to be neuropathy due to diabetes has worsened. Late 2017: Herniated disk in lower spine leading to total immobility for several months & extreme pain i.e. 10 out of 10 (unable to lay flat, had to sleep sat up on sofa, had to be administered gas & air to take me to hospital A & E department in ambulance. MRI ordered and showed severely herniated disk in lower back. Still waiting for corrective surgery despite being flagged as urgent. Have to use wheelchair, initially for everything but now for anything further than exit to the building. Some pain in right leg has now diminished but not in left leg and still experiencing “Buzzing or Pin & Needles” in both legs but now mainly in left again”, numbness to lower legs and feet and inability to walk ok. Danger of falling and tripping is still severe. Have to continue to use wheelchair for activities such as shopping or distances over a few meters.

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Rosies

Am no medical expert but know fibromyalgia and MS are very alike in terms of symptons. Have u had any MRIs? Cause you will find it difficult to rule out MS when u have the fibromyalgia. I am also on gabapentin as pain relief from back pain due to RRMS but not convinced of its usefulness. You need to pester ur GP to get MRIs as now seems to be most favoured tool to diagnose MS. Good luck.

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Hi im new to this site havent been diagnosed yet.I went to my doctor a yr ago with pins needles and a feeling of having a hot water bottle in my right thigh pins and needles and dizzy spells.he said to return if symptoms returned which they have it was exactly a yr since i had been/he referred me to a neurologist who has referred me for a mri and a lumbar puncture ,Would he want these tests done if he thinks i have ms.Also really nervous about lumbar being done.

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I’ve just recently just been diagnosed with MS , I had tingling pains all down the right side of my body for a total of 10 weeks and was making me struggling to do a lot of things, after 3 doctors appointments I was finally referred to the hospital and they gave me several blood tests and I had a MRI scan and a lumbar puncture , 6 weeks after I ,got my results and it was positive for ms and also the blood tests came back positive for sarcadosis which am waiting for a letter to get a chest scan. All very new to this and just have so many questions , but the symptoms have worn down and am back to doing normal day to day things . Sitting my school exams while managaing all the docter and hospital appointments was so hard but luckily manage to keep a positive attitude towards it all