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MRI and LP. PLEASE HELP.

Hi everyone, Im a little nervous to be writing as I usually just read the posts and answers but I cant find one to help me tonight. I am young, fairly newly married with a baby and I have been diagnosed with MS. I have had a number of MRIs since last November which first picked up abnormalities. The plan was to wait an re scan after 6 months but in the interim I developed Left optic neuritis - clincially and radiologically diagnosed. There also had been progression of the deep white matter changes on MRI. I may not be saying all of this correctly but please forgive me as Im new to all of this. I since have been feeling so exhausted I can barely cope. The exhaustion started before the optic neuritis but hasnt left.My eye is almost better - vision still a little blurry and can get sore at times but compared to the first few weeks alot better. I also have a new problem which is jerking in my Rt ankle which is hard to describe - like the jerks you get when falling asleep but his pretty much happens 100 times per day now for no reason. I also have numbness in my lower lip and chin. not very severe but its there. I lost that sensation years ago but never followed through on it. With hindsight that was probably my first ever symptom - I was about 21 at the time.The neuro has talked to me about interferon but Im scared. I might want another baby, Im afraid of the side effects too. My work cant find out Im sick as I might loose my job. I Cant afford that with a family and bills to pay. I cant even take a day off if Im not well. Im afriad if I dont go on the interferon something terrible might happen and Ill regret it when its too late. The only other thing I cant figure out is Iv been told I have MS. my MRI is progressive. I believe (much as I dont want to believe) that I have MS but when I had the LP done Im sure I heard the neuro say that the bands pattern was normal. Can you really have MS with normal bands on LP? If there is any doubt I dont want to be on interferon!!! thanks so much in advance for the help.

Hi and sorry that you’re struggling with things. Firstly take a deep breath. Secondly here’s a few answers to issues you’ve raised: Your work cannot sack you for having ms - it is against the law and we are protected by the discrimination act. What they can do if you decide to tell them, is to make suitable and reasonable adjustments for you should you need them. With regards to the lp - yes it is possible to have ms and still have negative results, although this is rarer in comparison to those with ms and positive lp results. It sounds like you’re still in a relapse at the moment - do you have an ms nurse yet? If so then speak to them with regards to your symptoms and perhaps they can help and prescribe medications that might help with some of your symptoms. With regards to the interferon it is possible to start them and then stop them later on if you decide that you do want to have another child. With regards to side effects - yes some people get side effects but some people don’t so it isn’t a yes you will or no you won’t have side effects its a possibility that you might but not a certainty. Don’t rush into taking them because that’s what you think you should do - its a personal choice and some people don’t take any medication for their ms and some people do so make the decision that’s right for you. Lastly just sending you a hug as it seems like you need one Karina x

Hi and sorry that you’re struggling with things. Firstly take a deep breath. Secondly here’s a few answers to issues you’ve raised: Your work cannot sack you for having ms - it is against the law and we are protected by the discrimination act. What they can do if you decide to tell them, is to make suitable and reasonable adjustments for you should you need them. With regards to the lp - yes it is possible to have ms and still have negative results, although this is rarer in comparison to those with ms and positive lp results. It sounds like you’re still in a relapse at the moment - do you have an ms nurse yet? If so then speak to them with regards to your symptoms and perhaps they can help and prescribe medications that might help with some of your symptoms. With regards to the interferon it is possible to start them and then stop them later on if you decide that you do want to have another child. With regards to side effects - yes some people get side effects but some people don’t so it isn’t a yes you will or no you won’t have side effects its a possibility that you might but not a certainty. Don’t rush into taking them because that’s what you think you should do - its a personal choice and some people don’t take any medication for their ms and some people do so make the decision that’s right for you. Lastly just sending you a hug as it seems like you need one Karina x

Hello, Sorry for your diagnosis. Just wanted to say that I am diagnosed and was so without an LP. The other evidence was strong enough. I m still having to have one though as my Neuro likes to tick every box. I’ve been taking interferon since April after being diagnosed this February. Good luck with what you decide and this forum will be here to support you :slight_smile: Sam xx

Hi lillywhite

I had a negative result on LP, but was still diagnosed with MS as the other tests came back positive, and later MRIs showed progression.

I’m no expert, but I understand that about 10 to 15 per cent of people with MS test negative on LP.

Hope that helps a bit.

Thanks for the help and advice. Maybe he said an abnormal pattern as opposed to a normal pattern. Sounds similar when you say it out loud. I need to clarify that with him.I am not coping too well right now. The fatigue is terrible. Im finding it so hard to keep going. There are some evenings when I sit down it doesnt matter what is happening I just cant get off the chair. I never understood fatigue until now. Its not just tiredness. Its like trying to do things or move or think through the thickest fog imaginable. My husband doesnt get it and wonders why the house is a mess, the bottles arent washed and made and dinner isnt on the table when he gets home. I am working full time too and really take no time for myself. Its all for my family. Then I also have my angry days - when I dont feel too bad. Why me? Why now? What next? Then there are the sad days where I think about my husband and my baby having to watch me go through this. We have been through alot in the past with me already overcoming a life threatening illness only 5 years ago and already living with another chronic condition since childhood. It just seems so unfair. It felt when our baby was born that this was a fresh start and life could only get better. I feel like someone somewhere is testing me and I have just about reached my limit. Is there any treatment for the fatigue? Im guessing not but maybe Im wrong!! From what o hear interferon will prevent more relapses but wont make me feel any better, in fact I may feel worse. All I want now is to feel a bit better. Get back to being me. Maybe then I can deal with what comes next… Sorry for the moaning and the pity party but i promise I am usually not like this at all. Maybe I just feel there are alot of people here who have been at this stage and moved on and can now provide insight and help for me. I cant talk to friends much, or family at all and work is all about the brave face. Feels like this forum might be the only place I can actually talk openly about how Im feeling.

Hi, I had an mri that showed 4 small leisons on my brain. My neuro suspected ms and wanted me to have a lp like Sam to tick every box. My experience of the lp was awful as they could not get the lp needle further than halfway and tried 5 times. They aborted the proceedure and classed it as “failed” which I understand happens to 1 in 10. I refused to ever have it again and was still diagnosed without it. I have been on rebif fir 4 months with no side effects at all. Good luck. Dawn x

Hi, I had an mri that showed 4 small leisons on my brain. My neuro suspected ms and wanted me to have a lp like Sam to tick every box. My experience of the lp was awful as they could not get the lp needle further than halfway and tried 5 times. They aborted the proceedure and classed it as “failed” which I understand happens to 1 in 10. I refused to ever have it again and was still diagnosed without it. I have been on rebif fir 4 months with no side effects at all. Good luck. Dawn x

Hi, I had an mri that showed 4 small leisons on my brain. My neuro suspected ms and wanted me to have a lp like Sam to tick every box. My experience of the lp was awful as they could not get the lp needle further than halfway and tried 5 times. They aborted the proceedure and classed it as “failed” which I understand happens to 1 in 10. I refused to ever have it again and was still diagnosed without it. I have been on rebif fir 4 months with no side effects at all. Good luck. Dawn x

Hi I did write a really long that you message last night but somehow is never appeared on this page- so not going to chance a long one again. Thanks for the advice. I’m really not doing too good right now but hope things will improve very soon. xxx sorry for the pity party also! Not usually a moaner at all.

You poor love! Don’t panic, I’m sure you’re in good hands and you’ll have answers soon.

Hope you’ve got support from MS nurses etc.

X

Hi I did write a really long that you message last night but somehow is never appeared on this page- so not going to chance a long one again. Thanks for the advice. I’m really not doing too good right now but hope things will improve very soon. xxx sorry for the pity party also! Not usually a moaner at all.