i won’t make this too long a post for my first post but thought I would share and say hello.
I have been having some symptoms for about 18 months where I have had constant migraines, tremors on and off in my hands and like a jerking movement in my hands and legs. I also had like a vibration feeling in my body like just my torso when I lie down and constant twitching. From time to time maybe every month or so I have spells when I have twitching in my face in my eye, cheek and lips just ok the one side. I suffer with a weakness in one of my arms and a lot of sciatic type pain in my back and leg I also have the most amazing feeling of tiredness again some days I’m fine others I am achy sore and I am exhausted. Even now and again I get a stabbing pain in my eye. . My health prior to this other than regular virus type infections was fantastic but this is a constant every day or month to month thing now. Individually I would think nothing of it and also if they came once then left again I would think it was nothing.
i was referred to neurological consultant about a year ago who ordered a regular mri without contrast because of the migraines. - the consultant did not ask me any questions about any other symptoms I was concerned about nor did I have time to ask as I was in and out in minutes. He told me he would send my gp a list of medications to try until I found one to keep the migraines under control of which I have now found.
I am now if this position where I decided to go back to the GP and say I was still concerned - waited a good 6 months or so and they have referred me back to the neurologist but I’m in this limbo where I don’t know what to think or where to turn.
Well I figured I could come chat to you all as you seem super knowledgeable and helpful and above all supportive! Look forward to hearing some thoughts.
Hello welcome to the site, you are right to see your GP if you are still worried about the shakes and tremors, the problem is that ms has different symptoms for different people and it’s might not be ms at all. People on here can only talk about their ms and the symptoms that they have or had. So for awhile you maybe in limbo land untill you have more tests and see the neurologist again. What I would do is write a time line about your symptoms when they started and finished if they did or not, you may have to wait a while for an appointment as they are very busy, I had an appointment in April and have another one in April of next year. Good luck Kay
Thanks so much for your reply and yeah that totally makes sense. I suppose for me what I’m wondering as well is if a mri without contrast versus an mri with contrast would show different results. I have families member with MS and although I know there is no firm research that shows a genetic link there are studies that are showing the possibility. It’s such a frustrating process to find whatever it is and just will be happy to know whatever it is. I’m glad to have joined here as reading the posts everyone seems so kind and supportive and I understand completely that everyone is so so very different. I’m just looking for the right things to ask and the best things to do so the timeline is a fantasy idea and I’ll start that immediately!
looking forward to getting to know everyone and journeying through this process with people who have been there. I don’t always understand the medical jargon so it’s helpful to be here for those who do to share their expertise!
Kay is absolutely right in her advice to you. Keeping records of what has happened to you and when is a really good idea. You could make notes as to what symptoms have occurred and whether any have improved, disappeared or stayed with you, in addition to any recurring symptoms.
It is possible that an MRI with contrast can show up more detail than one without. It would also show up any areas of current inflammation. But a non contrasted MRI would still show up any demyelinating lesions if you had them. I assume not as the neurologist was content to call your symptoms migraine related and not follow up anything else.
You could also write down a list of questions for the neurologist when you see him/her. It may be that you get to see someone different this time, which might make things easier for you. You’d be starting from scratch, rather than trying to make someone rather uninterested show an interest!
You could mention MS in your appointment. I wouldn’t ask in such a way as to be suggesting that you have MS exactly, more that it’s made you worry because you have family with MS so it’s made you worry. If the neurologist definitely writes MS off, then I think you should probably believe them - at least for now. Accept that it’s not MS and see if you can reach a point where the cause is clearer. If possible, come up with a plan to reduce or recover from your current symptoms.