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MRI yesterday, and now we wait...

Hello, this is my first post.

I’m 30 years old and have had symptoms since March this year - left sided weakness, shooting pains, tingling, numbness, brain fog, lightheadedness, double vision - they first started following the breakdown of my marriage so I put a lot of it down to stress. I first got the symptoms checked out following shooting pains in my arm followed by continuous weakness in the same arm. I got checked at the UCC who observed brisker reflexes on my left side, including my leg (I hadn’t paid attention to my leg being affected at that point) and a decrease in sensation down my left side. I was sent for a CT scan which was clear and they said it was most likely a migraine bought on by stress. This had been going on for a couple of months on and off so my GP disagreed with it being migraines and referred me to a neurologist. I also had my eyes tested (no cause for the double vision found) and saw a chiropractor (who said I have a winged scapula and the arm weakness could possibly be caused by a bulging disc but that wouldn’t account for the symptoms in the leg). I saw the neurologist at the beginning of July. By that point I’d convinced myself my leg wasn’t affected, that it was all in my head, but she confirmed that my reflexes are asymmetric all the way down and she said she could tell the sensation was different between my legs based on how they react to stimuli. She said she didn’t think it was just down to stress, more that that had brought it to the surface, and she ordered a head and neck MRI with contrast. She mentioned MS, Lupus and Rheumatoid Arthritis. I had the MRI yesterday and I go back to see the neurologist in 3 weeks time.

I have recently had very severe pain in my left shoulder and that side of my neck. I realised that this is something I’ve had for years but my husband used to massage it for me so the pain was never as bad as it is now. I had a massage at a spa at the weekend but that hasn’t done anything to ease it. I’m hopeful that that could be the culprit, but as the chiropractor said, that wouldn’t account for the leg being affected. I guess I don’t really have a question as such, I’m just wondering if anyone has any experience of muscular problems (such as a bulging disc) mimicking MS symptoms in this way or if there’s any correlation between the two. Also, if anyone has had similar symptoms what was the outcome. I know it’s pointless to speculate but I need something to distract me for the next 3 weeks!

thanks all.

Hi Michelle

I can’t really help with anything other than sympathy for what you’re going through.

The trouble is that even if someone has had what sounds like exactly the same symptoms as you could end up with a different diagnosis.

I think you’ve done all the questioning and querying possible and are probably well aware that all you can do at this point is will the next 3 weeks to go by without stressing too much over it.

Feel quite free to continue chatting on here to us, we’ll do our best to help you through the next few weeks. I think we are all so aware of the misery that comes of life lived in limbo waiting for appointments.

Sue

Thanks for your reply Sue.

I know you’re right. I suppose I’m partly looking for the variety of things it could be. I didn’t ask the neurologist about the possible bulging disc as, although the chiropractor had mentioned it before the appointment with the neurologist, I wasn’t having the pain in my shoulder at the time so I didn’t really think about it. Now I’m wondering about it more because the pain is awful and the muscle is very tense. But like I said before, that wouldn’t account for what’s going on with my leg.

The waiting game is awful. I’m lucky that I don’t have to wait too long. I have two children who also have health issues at present so I haven’t really thought much about my own health until the MRI yesterday, as my focus has been on them. I’m sure my focus will shift back away from me soon enough and my appointment will be here before I know it.

My appointment with the neurologist is on Monday. I’ve realised that I’ve become more anxious that I won’t have a diagnosis or any more answers. This week has been quite bad - I’ve felt very lightheaded, unable to concentrate and even function sometimes. I’ve also had real problems with my left side, my numb side. Today I dropped a cup of coffee and then my phone on the floor, both from my left hand. My Aunt had some tests at the beginning of this year as she has a whole range of symptoms and a CT showed a couple of shadows on the brain. She still doesn’t have answers but one thing that was considered was MS. I saw her this week and was telling her about my appointment and I said that the neurologist had said that the obvious thing I am probably worried about with my symptoms is MS, but there are other possibilities too. But my Aunt said she didn’t think it would be MS as if it was, they most likely would have rushed through the tests and the diagnosis. Is that the case? Is it likely that it’s not MS given the delay? From what I’ve seen on here it seems that people wait a long time for a diagnosis. Also, if the MRI had shown up lesions, would I most likely have heard from the neurologist before now? Or would they just wait until Monday’s appointment? I don’t know what I’m hoping for at this point. Like I say, in a way, having no answers will mean that I have these symptoms with an unknown cause and if the cause is unknown that means I just have to put up with it. But is there a cause which is treatable that I could hope for? Something muscular perhaps? I hope so.

Hi again Michelle

Your aunt is wrong. As you can tell from all the people on this forum who sit unhappily in limbo for months or years.

In fact, your MRI to neuro appointment time is remarkably quick (don’t take any significance from that).

At least it’s tomorrow. Keep in your mind that you may walk out of the appointment with a diagnosis, you may come out with more tests, you could come out confused and uncertain about what next.

For your sake, I hope you come out with answers and not more questions and more worry.

Do you have someone going to the appointment with you? If so, make sure they know their job is to remember as much as possible about what’s said.

If you’re going alone, try to write a list of questions you’d like answered. And do your best to remember what you are told. (There’s something about appointments like this that make your brain go into some kind of fugue state so you leave the room saying / thinking ‘what the hell did he/she say?’) So if there’s something said that you don’t understand, ask for clarification. And try to leave with the questions that you have now answered.

If you are diagnosed with MS or CIS, you need to know if you are to start on a DMD. You should also be given contact details for an MS nurse. And of course, ask for timescales.

If the neurologist thinks more tests are needed, ask what they are, what the neuro is looking for, what s/he thinks might be the result and what was seen on the MRI. Also, ask roughly how long you’ll wait for the tests and also when you’ll have another neurologist appointment.

If the neurologist can see no lesions or areas of dodgy white matter on the MRI and as a result doesn’t think it’s MS and doesn’t want to do more tests, ask what s/he thinks could be the cause of the symptoms, and where you go from here.

Best of luck.

Sue

Have you had a scalding kind of burning pain on your legs or back of your eyes?

Fay

Thank you so much for this response Sue. I’m going to write a list of questions based on your post. I’m going on my own to the appointment but I’m thinking of hitting record on my phone so I can listen back afterwards in case I miss anything that she says.

My appointment is later today so I’m going to try to distract myself until then. I’ll be sure to update afterwards.

Thank you again for your support.

Michelle

No, I haven’t had anything like that. I’ve had numbness and shooting sort of pains in my left leg, but not a burning sensation. And I haven’t really had any pain in my eyes, blurred/double vision and a bit of eye strain but that’s about it.

What would those indicate? Or not indicate?

Michelle

What about bladder - do you rush to the toilet often?

Do you wet yourself - use pads?

And if it helps - I have never had shooting pain - it is more focused like a gunshot wound.

I feel like I have been shot in my spine with a burning pain.

An ouch!! pain with inflammation which causes the numbness.

Fay

Hi Michelle

Good idea to record the appointment, but ask them first if it’s OK, then at least you can put your phone somewhere that it’ll pick up the conversation!

And what will happen later is that you would be sent a copy of the letter the neurologist sends to your GP (though that can take ages).

Good luck

Sue

Michelle

Am not a medic by any stretch but seems you have classic symptoms of ms. I waited 6 months for a definite diagnosis and as many have replied on here it is not unusual to find ms is difficult to diagnose at the outset.

I have pins and needles most days from both knees downwards and extruciating pain in my left side. Have also had shooting pains down my shoulder which my GP said sounded like another relapse of the ms. My eyesight does not seems to be affected but that is ms; it differes from patient to patient.

Am currently on a medication to slow down the progression of the condition and my last MRI had showed it indeed had slowed down.

Will be interesting to hear how your appointment with the neurologist goes but keep chin up. MS is now a condition that can be managed somewhat.

Good luck.

I’m at the hospital waiting to be seen now. My appointment isn’t until 4pm so I’m very early and now I need to pass half an hour without stressing myself out! I just hope I get some answers. The not knowing becomes worse in the end, as I’m sure many of you are well aware! Once you know then you can do something about it, or at least factor it in. I’m really struggling to concentrate today. Another “symptom” that I’ve been experiencing but it would be better if I could concentrate on the day I have the appointment to get my results back!!

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What questions are you going to ask?

Good luck!

Fay

  • What did the MRI show? - Does this lead to a diagnosis? - If there are any more tests - what are they? What are you looking for? What do you think they will show? When will the tests be done? - If there is a diagnosis - what does this mean? What are the treatment options? When can/will treatment start? Who will manage my care - i.e. If there are any problems with the treatment, GP, Neuro or other? - If there isn’t a diagnosis - what is likely to be causing these symptoms and what can I do about them? - What happens next? Will I see the Neurologist again? If so, when?
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Michelle - are you there?

What happened?

Hello, I’m out and it’s not MS. The MRI was clear aside from a small white patch. The blood tests were all fine other than the globulins (?) which she said basically means I’m run down. She thinks that the cause of the symptoms is migraines, but not the typical headachy migraine, the type that causes aura. I used to get awful migraines and I don’t so much anymore but she said the longer you have them the less likely you are to have the headache with it as your body gets used to experiencing all the other weird symptoms. She said I need to try to get more sleep (I have two young children, it’s not toing to happen!) And she’s given me three medications. Two to take daily and one to take at an attack. I have to have an EEG and then go back to the neurologist in 3 months. Thank you all for your support on this thread. It’s really appreciated.

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Hi Michelle. Was just having a read through this conversation. I hope you got as much out of your appointment today as you possibly could. Lots of positive thoughts for you.

Brilliant question list, couldn’t have done better myself.

Sue

Michelle

I’m really pleased that it’s not MS. I hope you are happy with the diagnosis. I know that sometimes people come out of an appointment like this and feel a bit down (because you had more or less convinced yourself that it was MS). Or they feel elated immediately, but later feel a bit low.

Don’t take your initial reaction to be the final feeling you get from the appointment. You are bound to change your mind as you get over the symptoms that you’ve been living with. The drugs the neuro has given you should help. And as time goes by you’ll maybe wonder what the fuss was all about

I’m glad we were helpful on this forum and very happy for you.

Sue

Michelle Great news that you do not have MS as the symptons really pointed that way. Now you can get with your life. Our club is one you do not want to be a member of. Regards