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Dumped by my neuro (Quix if you have time)

Hi All,

I had my mri a few weeks ago on the 3T of brain and spine and it was again all clear, anyway to make a long story short, my neuro only rung me yesterday and told me this happens a lot, and that I still can't rule out ms.
Then in his next breath he told me my symptons could be any demylination disease that the mri is not picking up, or that it could be something that just goes away in time, he also told me there are many disease that make symptons worsen in heat, although he did not say what these were.
He said I should go for a 7 or a 9 Telsa and that he heard on the grapevine that Australia was getting one, or I could go on a holiday overseas (yes overseas), and while I'm over there I could get the 7 T then, I will just go out the back to my money tree and grab a handfull of cash!!!!!!!!!!!!!!!!!!!!!!!!!

He said he can't help me as nothing is showing on mri, so what do I do now, and where do I go, I'm all alone here with this, I don't talk about any of this to friends, and my family don't understand, as they can't see any of my symptons, my hubby is supportive but doesn't really understand either.

Today I still have the mild tingling in my groin, feet, hands, and tongue, I have mild vertigo all the time inside my head, I'm numbish under both feet, and my back feels numbish also and burns.
I feel so isolated its not funny.........  I'm in a small mining town, have 3 kids to care for and 1 G.P. who told me my problem was anxiety over 2 years ago, so I will not go back to him at all.
My symptons are not causing me any problems now, they are just annoying and worriesome.

So far I've had 3 mri's of brain and spine on a 1.5 and repeat on a 3, when can ms be ruled out.

2 Drs on here have told me I could almost rule out ms now, and I spoke to a radiologist and he said the same, but my neuro says it can be never ruled out.

Any advice anyone????????
Thanks
Melissa
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Avatar universal
Hi Melissa,
There is not a T7 machine available in Australia yet.  There was talk of one being based in (can't remember now) either WA or SA at some research hospital but it has not happened yet.  

I can relate to your frustration, you want a name for what you have wrong with you and when you don't have a name for this "thing", there is always the worry of what it is and what it might do. If the symptoms are troubling you perhaps your Dr can prescribe some medication to help, I take Gabapentin and it helps me a lot with my pins and needles etc.

I think JJ and Laura have given you some great advice.  I think that it is great that your MRI has not shown any major problems although it does not provide you with answers at least you know that they can't see a brain tumor or an anurysm or lesions etc., and I am sure that your neurologist is correct that the T7 would be showing lesions that the T3 might not but eventually over time if you had MS they should show up on the T3, that is why most neurologists say over a period of time with negative LP and negative MRI with repeated MRI your chances of MS would be slim but this does not mean that there is not another problem that is causing your symptoms. I guess you can never totally rule out MS either.

I do believe your neurologist has given you the brush off which seems unfair.  Yes there are many neurological things out there that can cause your symptoms and others that are not neurological but he could either offer you some advice, help for your symptoms, support or some other different avenues of testing. Did they do your spinal cord as well, sorry I can't remember?  I hope they did.

Have you had all the bloodwork done for B12, lupus etc., all the usual ones when you have neurological symptoms?

Have you had a Lumbar Puncture done?

VEP SSEP EMG and other NCS tests?  Sometimes these tests can show up a problem with the peripheral nerves or the optic nerves that the MRI is not able to detect yet.

If you have not had this testing done are you able to get a referal to another neurologist and get a fresh opinion, after all it's your body and your health.

Do you have any abnormalities on examination?

Do you feel that you are getting worse over the period of time since your symptoms first began (few years ago?)

I am not trying to pry but I just thought if you feel you are getting worse you need to get help, see another neurologist or another GP who will listen.

Three young children and living in a mining town would and could be tough!  The heat would kill me!  The support on here is fantastic, even if you don't have MS ( I don't), I am still being treated with the same drugs and have the same or similar problems so just share on the forum, that is the great thing about this forum, we all help each other, and we all understand how each other is feeling and can relate to the problems of not having a diagnosis to what it's like to receive a diagnosis.

Melissa you have my number if you are lonely give me a call, I am always happy to chat.

Take care,
Udkas.
Helpful - 0
572651 tn?1530999357
Melissa,

You and I know there is something going on with you, and some answers would make coping with the symptoms much easier.  Knowing the enemy is the most important part of any battle.

MS can never be ruled out, but it might be that is not what you have bothering you. If it is MS, it may takes years for it to be fully visible.  In the meantime, JJ has given you some excellent advice - I hope something in what she has written resonates with you and your situation.

If the symptoms get too bad, please talk to these doctors about treating your symptoms.

About the MRI's, your doctor really does not know what he is talking about .

I don't think the 9T or higher has been approved for use with humans.  The 7T is still being fine tuned everywhere and is right now being used  mainly for research purposes and not clinical diagnosis.  I have been imaged in the 7T at OSU twice now - and both times were mainly for research into how the computer programming should be developed and fine tuned.  

I count myself among the fortunate few MS patients who have been in this strength machine, and maybe one of only a handful who have been in it twice. I have pictures from my first time posted under my profile page if you want to see what they look like.



Its too bad you don't have more support in your community - living in a remote, small town must be difficult when you are facing these problems.  Just remember you are not alone - we are all here to support you and anyone else who needs a hand.  

I wish I could offer more and give you the answers you need.

as always,
Lulu


Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
If there is a T7 MRI in Australia or even one coming, we would know about it just like they did when a T3 that was installed at one of the childrens hospitals, sorry but if there is one hiding around here its a well kept secret. Its posible one is going to be installed at a research centre or even a private hospital but its still doubtful, i will keep an ear out so you dont dig up that money tree before there's a point in it.

From someone else with out a reason for the weird and disabling, live your life free of clutter. What ever it is, it will show its self one day, live your life as best you can, make the changes you need to live a happy and fullfilled life, find the balance that works for you. Yesterday i went to the park, played and had fun with lots of laughter, nothing else mattered in that moment, i was playing with my boy and it felt wonderful. Its all about balance and making the most of it, when you can and how ever you can. My side of the fence is as green as anyone elses because thats how i want to see it, nothing will bring me down so far that i cant get back up again. Find your strength and find what matters to you and just live a good life, you cant change the past but your sure can make a difference to your future.

It sounds stupidly simple and useless advice, it probably is but to me its the one thing i CAN do, there is no point to looking at what i cant do, its already done and dusted and time to move on.



Cheers.........JJ

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