Confused with my diagnose
Posted , 6 users are following.
In September 2016 I had a brain scan which showed lesions and demylation also lack of conductivity. Today I had my neurologist appointment, well it was a waste of time. He didn't have my results in front of him,, he didn't go through anything just said there are several reason why these are found, stroke, smoking or drinking and yes MS. I have a lot of MS symptoms the main ones being fatigue, heavy legs and a feeling of a tight band around my thigh. It's my right side that is effected. All I got out of today is that I've to have a lumber puncture. I've waited 2 months for a 8 minute consultation which as left me more confused than before. If I have demylation ect and symptoms surely they can diagnose without a lumber puncture, I'm not happy with the neurologist I saw and I will be asking for a second opion as I'm of work, I work for the nhs and the Occy Health deem me unfit to work at present with my symptoms due to the job I do. It's going to be another few weeks before my lumber puncture then another few weeks before I get the results. Is all this normal?
0 likes, 19 replies
bic24773 Lulu71
Posted
Hi, get a second opinion I never had a lumbar puncture and mum refused one and quite rightly so. They can cause problems in themselves like arachnoiditis. I didn't like my original neuro but at least he gave me my diagnosis, I saw another 18months ago and they'd lost my notes 😞😠 so that dudnt go well and my next appointment never cane through, then they cancelled this Octobers. My mum had a different one every time she went but they were all lovely to her especially a female Asian one. Good luck. It's your life your body be firm. 🌹🌈
Lulu71 bic24773
Posted
Yes that's what I'm going to do, my mum has kindly said she would pay for me to go private. It's so frustrating that you build up for your Day with the neurologist then you come out with more questions than answers! 🙅🙅🙅
jo83602 Lulu71
Posted
Hi I really understand how you feel...I've many MS symptoms as my neurologist as said but was diagnosed with Fibromyalgia 2 years ok so he is dismissing MS, my brain scan also shows changes and my consultant didn't seem bothered about how I felt or how it affects my life...I'm also of work which means no money!! Frustrated and annoyed that they seem to rush your appointment...I to am awaiting a lumbar puncture...been Ill for over 4 years now and getting no where apart from trying to help myself. It's a long uphill struggle...hope you get answers soon x
Lulu71 jo83602
Posted
Your right It is long uphill struggle, I've struggled for 6 years now having had problems, I work full-time (off at the moment), but all I did was work come home and sleep, at the weekend I would sleep all day only having a few rare days were I felt I was able to do things, I keep going over my consultation and thinking why do we have an nhs, I actually work for the nhs and if I worked in the department of my consultant I would be ashamed of him rushing patients when they only want to get on with their lives with help and support! My husband and I left looking at each other and thinking what has just happened? My husband said he looked like he was ready to go and have a round of golf, that's how rushed and unimportant he made us feel! , with it being a Sunday too 😡😡
jo83602 Lulu71
Posted
I bet they would soon help if they felt the way we do...I had to go part time and even that's a struggle now get a couple of good hours a day..the pain the numb and tingling..tight chest like ribs being squashed and well can't explain the tiredness it's like my body just does not function and brain shuts off...the list is endless and all you can do is take painkillers rest when can and take each day at a time...used to love going out but can't plan that anymore. Hope you've a supportive family cause you need it...people say you look fine...next person to say that gonna get a mouthful lol. Wished I could afford to go private!!! It is a long road sweetheart and please keep in touch nice to have someone to talk to who going through same thing xx
Lulu71 jo83602
Posted
They make you feel a fraud, but my family have seen how I am, like you I use to look forward to going out but now by the time I'm ready I'm shattered and really just want to get in my pjs. I thought I was having heart attacks but since learned it's the ms hug. Not a day goes by without having no symptoms at all. We have to keep going and keep strong but today I'm having a down day due to my none existence consultation which we had to travel 40 miles too!
jo83602 Lulu71
Posted
Try keep your chin up babes...I know it's hard and like you having a bad few months and also affecting my speech which is very scary but consultant said that's not a symptom but I know for definite it is...they make you feel like your going crazy and try going down the it's all in your mind route which you feel like screaming at them I'm perfectly sane and strong and not having a breakdown!!! I know real pain..yes it's hard to explain as symptoms vary and each day different but it's real. Try not to let this consultant get to you and keep fighting xx
richard1951 Lulu71
Posted
It is frustrating Lulu but that's MS diagnosis protocol for you. MS symptoms can be like many other neuropathological symptoms. Brain lesions are only part of the diagnosis and as your consultant explained to you, you have to have a lumbar puncture to confirm that your spinal fluid has inflammation, or signs of inflammation. I have had symptoms of MS for over forty years. Most were mild and explained by neuralgia or viruses. It was only when I had four episodes of loss of eyesight over 12 years followed up by optic neuritis that MS was seen as a possible explanation for my symptoms. I then had an MRI scan, followed by field tests, colour vision tests and finally a lumbar puncture test. It was only when all these were positive in regard to MS that I was given a confirmed diagnosis. It took eighteen months from the eye problems to diagnosis. I saw two opthalmologists, a neurology consultant, a neurology nurse, MRI and lumbar puncture with waits for appointments, assessment and consultations. I felt I was very well supported by all the specialists and my GP surgery. Since then my symptoms and condition have led to a neuropathic bladder, meaning I have to catheritise intermittently, developed a hiatus hernia through constipation, have reduced mobility and use of my legs. My eyesight comes and goes in one eye and I know things will continue to get worse. A diagnosis of MS is not the solution as there is no cure. Every individual MS is different and treatment is aimed at alleviating symptoms suffered. I can understand your frustration and worry, it is far better to have the right diagnosis. Hopefully you won't have MS and you will find medication and treatment appropriate for what you are suffering from. If it is MS without sounding harsh, it is something you need to
learn to live with. Many of us have very fulfilling lives and enjoy ourselves. You will need support and families have as much learning to undergo about living with a family member with MS. I wish you luck but you will need patience while the medical profession work towards a diagnosis. A second opinion will only mean you start right back at the beginning again. Best of luck.
Lulu71 richard1951
Posted
Hi Richard, thank you, I have a lot of symptoms but as previously mentioned the ones that are everyday, my bladder is temperamental, I can go days with only small amounts and sometimes not being able to go at all, my eyes are blurred some days and unable to read. I get burning, crawling feeling in my right leg, my hand is weak and I drop things and my right leg gives way. I am frustrated but I have to wait, I'm worried about my job as I'm a podiatrist and right handed. If my right hand was to have a "funny turn" it puts my patients as risk. So I would really like to get some help to enable me to return to work and not feel so exhausted and heavy legged as I do now. I understand that things need to be done but yesterday when I saw the neurologist he didn't seem to want to say much apart from draw a brain with dots on and say there are varies reason as to why I've got demylation, if I've had a stroke the brain scan would have shown scars this is not the case, I'm just frustrated with the neurologist 🙅🙅
amy71414 Lulu71
Posted
Lulu71 amy71414
Posted
Thank you Amy, I don't really want to have a lumber puncture which is why I'm going to get a second opinion and hopefully I will get more answers. Hope your ok now?
amy71414 Lulu71
Posted
Hey yer I am getting there slowly just getting used to the new medication now which isn't fun but hopefully it all works well 😊
bic24773 amy71414
Posted
Amy i didn't have one either my neuro said my brain was inflamed. Unfortunately my new neurologist said they've lost all my notes. They shut the Neuro dept and transferred everything to another hospital so was a bit dismissed....😞
steven12310 Lulu71
Posted
Unfortunately yes it is. It took 5 years to get my dx of PPMS with the same problems with neurologists as you. I eventually saw 3 at my local hospital who were somewhat less than idiots and eventually demanded to go to a Neurologist at a teaching hospital where I was dealt with much better. It takes time to see each different specialist and getting put on their waiting lists, generally about 6 months each time. It does appear you have MS judging by your symptoms.
I would advise you be very careful with your occ health as you need to ensure your rights are protected. I am or was a H & S specialist with a large company and specialised in DDA (disability discrimination act) so I know of many people losing their jobs and did not fight back. If you decide you are fit for work then go it is up to the OCC Health to ensure your working conditions are made as far as financially possible to assist you to continue to work. My company even went so far as to buy a mobility scooter for me to get around on at work.
Lulu71 steven12310
Posted
Thank you Steven, I'm at my doctors tomorrow and hopefully I'll get a referral to see a private neurologist if only to go through my brain scan and take more of a history which wasn't even mention on Sunday with the neurologist I saw. I know there are worse people but it could be life changing and doesn't just affect me but my family. I don't feel as though I can work at the moment even if it was just for my mental wellbeing. I know if I go back I'll be struggling and end up a lot worse than I am now. However my aim is to return to work with the help of treatment.
steven12310 Lulu71
Posted
Lulu71 steven12310
Posted
I know and in my job I hear it a the time, nhs is slowly cutting a lot of what we do hence patients are being discharged and left to their own devices which is frightening. My own doctor was very helpful this morning, he's told us not to waste our money only to be offered a cup of tea and a more sympathetic ear, which is right as he says in the long run I'll end up probably needing a lumber puncture. He understood my work issues and I have spoke to my manager who has reassured me that they can't do anything while I'll being investigated as they can't put any plans into action for my return. I'll await my letter for my lumber puncture!! 😞😞
steven12310 Lulu71
Posted
Lulu71 steven12310
Posted
Thank you Steven for the reassurance, I've not got a date yet, just waiting for an appointment. Hopefully it won't be to long then I can started on a treatment plan.