@boodle06

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boodle06

New & undiagnosed

Hi, I've been looking at all of your comments on this site for a couple of weeks and have finally been brave enough to post. You all seem so helpful. I'm 30 yrs old & it all began last November, I had a virus then my right hand & wrist became completely disabled, my speech was not right & my co ordination when typing on the keyboard. To cut a long story short they thought initially it was a tumor but then decided on leaving me for a month & doing another MRI. By the time of the nxt MRI my hand & wrist was functioning again, they did another scan and I have 2 lesions which are very close together which in jan appeared to be smaller. I met with my neuro in may & he only said then that it could be ms & that's why it's undiagnosed. He did say that as it stood in may that I do not have ms & I may never get it. He told me all he is interested in knowing is if I have blurred vision in one eye or any weakness anywhere. Since the end of may my speech has not been right again & I have had lower back pain and intense leg and ankle pain/spasms (these have been going on for 3 weeks) finally starting to feel better now. My speech still isn't right & this is what is upsetting me the most. I'm interested if any of you can advise me if and when I do get diagnosed & hopefully put on a treatment would you expect my speech issues to get better? I've been going through a nightmare for so long now I just want help with it now. Thanks for any advice you can give.

smackmacks

@smackmacks

Hi boodle06, has your neuro suggested a lumbar puncture?? That can be a little more decisive than an MRI alone. It's tough to get a diagnosis of MS but in a way it's better to know your enemy! I've not had speech issues so don't really know what you're going through but I know it's a bitch when your body doesn't do what it's supposed to anymore so can empathise some. I hope you get some answers here

scotkiwi

@scotkiwi

Evening <a href='https://shift.ms/community/people/boodle06/' rel='nofollow'>@boodle06</a> Welcome to the site. I have found everyone on here to be very helpful for me! So please ask questions away. I am not a Dr, but I think you should keep speaking with your Neuro. I can understand your frustration indeed - I initially lost my eyesight for 6 weeks or so, and things developed from there. I was 21 at the time and doing my final engineering exams at uni, and am 33 now, still stubbornly going strong regardless of what is thrown at Me! I really hope that things improve for you. It is the weekend now, so please do relax and take it easy! Si

chueykooh

@chueykooh

Welcome, have they ruled out other diseases like Lyme? There are diseases that can mimic MS. There is no definitive test for MS and that may be why they are hesitant to diagnose. They use MRI, Clinical symptoms, and sometimes lumbar puncture to diagnose. If you feel you are not getting anywhere with your current neuro I would try another one. Just as MS varies widely from person to person so does the quality of doctors. It's rough but you have to stay on top of it. My first doctor was a complete idiot and sent me to a psychiatrist because she didn't know what it was, when all of my symptoms were typical of MS. It was 4 months after the fact that I found a good doctor who diagnosed me. Some people here have been or have waited years for a diagnosis!

jenko1972

@jenko1972

Hi I had a lumber puncture along with MRI's and this is how I was diagnosed. I was glad when I got the diagnosis and it really helped me to know what I was fighting. Push to get the relevant checks and push to get a diagnosis. Best wishes Neil

DanRB80

@DanRB80

Hey i know how you feel in that limbo stage of not knowing what is wrong with you and hearing chinese whispers from various doctors. I get slight speech problems sometimes but my diagnosis came with my vision when my left eye stopped working in february for six weeks. Diagnosis of whatever you get told is long and slow so i wish you good luck and as Chels says you can PM me too for whatever reason :)

boodle06

@boodle06

Thank you all for your comments. When this all started bk in nov I had a lum punc which was in conclusive & evoked potentials which did show abnormalities but I guess they thought that was normal cause the inflammation was still there. Wen my doc wrote 2 my neuro it took me 7 wks 2 get my appointment so I can never see him easily, not that I like him n e way very abrupt & straight talking. Wen I did finally get 2 c him in may bcause I have had no blurred vision or weakness he just told me 2 get on with life & he discharged me bk 2 my doc. My doc has now written 2 him again tellin him about my pain & my speech issue & has asked 4 another scan, goodness knows how long that wil al take. I haven't been @ wrk throughout all of this cause it's hit me really hard. Worried for the future & scared I won't be brave or well enough to have children. Occupational health are trying to get me bk to work in the nxt 3 wks. It's the 2nd attack that I'm petrified off cause I know my eye sight is gonna play a part in it. If I've got ms obviously I cannot do n e thing about it but I would much rather be on medication to help rather than nothing which makes me feel like a walking accident yet to happen. @ least with help I could feel slightly more secure. Sorry for the long reply, I hope your all having a good weekend x.

Stumbler

@Stumbler

MS is fairly difficult to diagnose specifically. MS symptoms do occur in other conditions as well, which complicates matters. At the moment, the Neuro does not appear to be looking at MS. In his eyes, you have had what might be defined as Clinically isolated Syndrome (CIS), which is an isolated disorder. For a diagnosis of Multiple Sclerosis, there needs to be at least two separate "lapses", otherwise it's not "multiple". Anyway, MS is a very individual condition. I've had it for possibly 35 years and I've had no visual problems. Also, I had a break of about 12 years between first signs and the second. So, you can see why the Neuro advised you to get on with your life. Personally, I found that periods of acute stress triggered all the major relapses in my condition. So, please try not to worry or stress - it really doesn't help and can make things worse. It may be beneficial if you could resume a normal life, although you aren't that specific about your current speech and pain problems. Is not returning to work on a reduced hours basis not an option?

cameron

@cameron

All excellent posts - I'd just say that you are super-vulnerable to what the professionals say. We all want to trust the lot in white coats and it comes as a shock when you find out that some of them are crap. A bad doctor brought on symptoms for me - and conversely, when I found a good neuro team, it was a doctor who really sorted me out. So I would say that a good deal of your panic is because you're not getting the level of support you need. Would it be possible to get back to your neuro team and speak to the MS nurses? If not, you could ask your GP to refer you for counselling, which could help you through this uncertainty. But don't feel that you're alone or exaggerating or pathetic - people on this site have been through it ! Lots of luck, hang in there.

jane30

@jane30

To date I've only had one relapse of double-vision and was admitted to hospital where I had an MRI (which showed two tiny scars), a lumbar punction, was was positive and a Visual Evokes Potentials, which also showed to be positive and at the time would have been as it was my vision that was affected. I've been told that the above are the 3 main tests towards a possible diagnosis, along with medical history and symptoms etc. I have been seen by a neuro ophthalmologist and was referred to a neurologist who specialises and as an interest in MS, which I think is really important and a question I'd be asking when being referred again. Some hospitals in the UK are specialist centres for MS and it may be worth asking about what is available in your area. My neuro said he only wants to see me yearly and in the meantime I will be referred to an MS nurse who will contact my consultant if another relapse occurs; they also have a walk in clinic. Again, it maybe worth asking about this on appointment. He said medication will only be considered if a second relapse occurs within two years. I truly believe after many years of working in the health service that you have to be well informed, ask lots of questions and also receive answers, and question what they may say to you. Good luck and I hope you get sorted soon; don't stress and try and stay positive.