Forum

Need Help

Hello! I am a 57 year old female. Its the first time I have written on this site so I apologise if I’m writing in the wrong place. I was diagnosed with Psoriatic Arthritis in 2006 which resulted in me having to give up my job. For the last year or so I have been suffering with daily headaches and complicated migraines. Some of my problems are with balance and always bumping into things. Its worse when I am walking outdoors…I stumble quite a lot. My short term memory is not very good and I get my words mixed up. I also suffer with urge incontinence. Fatigue and muscle weakness is constant. I went to see a lovely Neurologist about two months ago…he arranged for me to have a MRI scan. I obtained a copy of the scan results report from my GP. The scan says multiple demyelinating plaques of ms are noted in bilateral periventricular and pericallosal regions. A few of the lesions are also noted in the corpus callosum. I have been very upset and tearful since reading scan results. My GP is lovely and is very supportive. I went to see another Neurologist Thursday 2/4/13 hoping to have the results explained and be able to ask questions. It was an horrible consultation…I found the doctor arrogant and rude, such a contrast from the first consultant. I left the appointment feeling more confused and stressed…I spent the rest of the afternoon crying. I have complained to the hospital and spoke to my GP. The neurologist wants me to have another MRI with Gandolinium contrast but gave me no explanation of why I need this next scan and at the moment I feeling like cancelling it. I have so many unanswered questions. I know I should have asked him questions but I was uncomfortable and just wanted to get out. My question is does anyone Identify with anything I have written?? and if so I would be interested to read what you have to say. Thank you x

Sorry that date should have been 2/5/13

Hi Blossom I,m new to this as well,I have had a number of tests one of which was an MRI scan with the Gandolinium contrast they scan you first then you are injected with the contrast which doesn’t hurt and the scan is repeated . It is done so I understand to confirm exactly where the lesson are how many and how big, that’s all I know, but good luck hon. Deborah

Hi Blossom, sorry you have found yourself here and have had such a terrible appointment with the neurologist. I can’t decipher the MRI jargon for you but the sticky called a beginners guide to the brain & MRI at the top of the forum by rizzo, might be able to help you get some answers. I have had several MRIs with the contrast dye, it will help them see if the lesions or plaques are still active. It is not anything to worry about, but I would ask your GP or the hospital to see a different neurologist, maybe go back to the original neuro? You have a right to ask questions about your health. I hope things get sorted for you soon, there are plenty of knowledgable and friendly people here. Best wishes, Laura x

Hello Deborah and Laura. Thank you so much for your replies, its very much appreciated. I feel more confident about going for the next scan with contrast. I will request that I see the first neuro Laura and your right, I do have a right to ask questions. I hope you are both getting good treatment and support. I will look at the link you mention Laura ta. Writing my thoughts down has been very cathartic. Take good care of yourselves. Best wishes, Noreen.

Hello Noreen and welcome to the site :slight_smile: So sorry you had such a miserable second appointment :frowning: Unfortunately some neuros seem to have played truant from the Bedside Manner class at medical school :frowning: I’m wondering why you saw the second neuro? Did the first one refer you? If yes, then perhaps the first one doesn’t specialise in MS and similar conditions and the second does? If this is the case, you might be better to stick with the second, for now at least. You can always find a different specialist after you’ve had your second MRI. The only reasons that I can think of for the second MRI are that he wants better quality and/or slightly different images or that he wants to be able to rule out other causes of your lesions, eg if they were caused by an infection then some if not all will have disappeared in the second scans. Either way, it’s not a bad idea to have them done, even if you subsequently switch neuros. Hopefully your MRI report will make more sense after reading my Sticky post. I don’t think I explained “pericallosal” in there - it means next to the corpus callosum. This, the corpus callosum and the periventricular area are common places for MS lesions however there’s a chance that the radiologist may have jumped the gun and it’s something else. I have to say that your symptoms suggest it’s not a very big chance though :frowning: I know the thought of MS is very scary, but please believe me that the reality is rarely as bad as we fear. MS really isn’t the end of the world. Karen x

Hello Karen. Thank you for your informative message. The reason why I saw the second neuro Karen is because the first one had a backlog of patients to see. I went to see my GP about two weeks ago for a review. I asked if she had the results of my MRI scan because it was nearly four weeks since having the scan…I just assumed no news is good news. She accessed the scan results and was taken aback by what she read and then read it out to me. She also gave me a copy at my request. It was my GP who contacted Neurology updating them and advising them to see me. The second neuro hadn’t even viewed the scan Karen and said he needs to look at the scan for himself…it was said in a very arrogant way. Surely he should have viewed the scan before my appointment? My husband checked out both doctors and the radiologist on line. Neither neuro is specialised in MS. The radiologist is a consultant and specialised in radiology. Thanks again for taking the time to write karen, I’m very grateful to you. Take care, Noreen. ps! sorry there’s no paragraphs…can’t seem to do them on this page

The woeful shortage of good neuros strikes again :frowning: It is not uncommon for MRI results to sit on neuro’s desks for what seems to be far too long to us, but if the results aren’t urgent, there’s often no reason in their eyes for the patient to jump their clinic queue and MS/?MS is not considered urgent :frowning: The fact that the second neuro hadn’t bothered to review your scans before seeing you even though scans are easy to access on the hospital system and yet he referred you for more scans seems very bizarre and I really can’t understand it at all. Unless you saw him at a different hospital? Even then, why not just explain that he couldn’t access them?? From this, I suspect that you might be better to wait and see the first neuro, especially if there is an appointment in the pipeline already: personally, I would not have a great deal of faith in someone who treats me badly and sends me for apparently pointless tests! The other option would be to check the hospital website (and others in the area) and see which neuro lists MS as a special interest. Their waiting list is probably horrible, but at least you’d get to see someone with a definite interest and understanding of your MRI results. It really is completely ridiculous that you are in this situation. I might be tempted, if I were you, to lay the whole mess in my GP’s lap: they caused it, albeit by trying to help, so now they can fix it! Do you really need these new scans? (I doubt it.) Who should you see? When can you see them? Kx

PS Just press enter on your keypad as normal to start a new paragraph.

Hi Noreen Can see you have been given plenty of great advice already. Just wanted to add one thing. Whenever you get things sorted out and whichever neurologist you see, it is very helpful to take a partner or a friend along for support. Quite often they can be very helpful at remembering what was said and from my own experience with a poor neurologist- that tend to play nicer with someone else in the room! Really hope it all gets sorted soon for you. Laura x

Thanks Laura. That’s good advice. Noreen x

Hello Karen. Both doctors are based at the same trust but are locums. I have found a specialist centre on line ta, that is not far from me. To be honest my first instinct after the appointment was to insist that I have an appointment with the first neuro to explain my scan results before agreeing to another MRI. I will contact the hospital tuesday and speak to the department that liase for patients and help resolve patient complaints and let them know how I feel. Its been great talking this through…really helpful and I do appreciate it. Noreen x

ps tried pressing the enter button but no luck. Will get my lovely daughter to sort it

Hello Deborah, laura and Karen. Just want to let you know that the hospital department who handle patient/client complaints have arranged for me to see the first neurologist at the end of this month. They have also rearranged a scan date for me, a week after the neuro appointment. I will have the scan with gandolinium if its required. Thank you all again for your support. I wish you peace and good health. Noreen x

That sounds like an excellent result :slight_smile: I hope it goes really well :slight_smile: Kx

Good news and good luck! x

Been back to see the first neurologist this week and he was lovely I’m relieved to say. He showed me my scan on screen and explained things. I will be having another MRI next week with gadolinium contrast now its been explained to me. The neuro also wants me to have a lumber puncture which I’m not looking forward to. He won’t say if he thinks its ms and I understand why but I just want to know one way or another so I can move forward. I’m not very good at being patient but I will have to be. Just hate this hanging over me and sometimes wish I’d never had the first scan. Noreen x

hiya Noreen,

I totally understand what you’re going through, my 1st mri almost identical to yours and now waiting lp 2mri too. my legs are so bad i could barley move them but my gp is good and perscribed drugs even without dx.

Its horrible waiting isnt it. Ive done nothing but think about it, trying to prepare myself with knowledge. I think I could move on and deal with it if I knew what IT was! MS doesnt scare me anymore, but how it’ll effect my marriage, work, kids, finances etc does.

But the threads on here are a massive help I hope you can draw comfort from them too. Pm me anytime!

The good thing is, at least they’re moving forward hey. We’ll get the right help soon, I’m sure.

Kel x

Very pleased to hear that you got to see the nice neuro again and that it went well. I know that the waiting is horrible, but I’m afraid no going back and not having the first scan (even if it were possible :-)) would change anything: what will be will be. At least this way you get the chance of some expert help to deal with whatever comes.

I hope the LP goes really well. Remember to lie down afterwards for several hours and to drink lots of fluid (preferably with caffeine in it if you can). If you get the chance, ask them to use an “atraumatic needle” - it can help to reduce the risk of getting the post-LP headache.

Kx

Glad to hear you had a good appointment with the neurologist. Try not to worry about the Lumbar Puncture too much, i found the fear is worse than the reality! Hope the wait is not a long one and you can finally get some answers. Best wishes, Laura x