My wife was seen today by her neuro dr who to say was unhelpful is a understatement, my wife has come out in tears and feels as those people thing she is make this up.
i’ll start from begining, in march this year she was admitted to hospital with suspected spinal cord compression however this was ruled out. she went on to develop numbness, pins and needles in her arms and legs and could not get out off bed for 2 weeks. My wife also has vit d diffencey and hypermobialty and serve arthitis in her l spine she had a non contrast brain MRI which showed no lessions. while in hospital see developed tremours and went into retention and had to have a catheter for 2 weeks. Many drs said that this could be MS so i research into it but using this site and the ms trust so information all reliable.
since being discharged from hospital she went on to develop problems with bowels, memory and to bright lights as well as the balance problems and weakness in legs and arms
she has had a negative lp but her sensory evoked test showed differnatal changes in lower limbs but was reported as normal.
when we saw dr today (who is not ms specialiaty) who has said that because mri was normal, lp normal and sep ?normal there was no neuro issue and could not be MS.
She was not happy with this so he has referred to another dr this time a ms specialist within the same trust but said he will say same based on the above tests.
My questions are, 1) if when she was in hospital and this was the start of MS would lessions always show on a non contrast mri, or should we request a updated mri but this time with and without contrast. 2) is senosry evoked test best in testing for ms as i have read visual ones are better? 3) should we request via the GP a referral to a specailist outside of the current trust.
we do not want this to be MS but want it ruled out correctly and feel currently this is not happening
Hi CH, Sorry you and your wife are having such a bad time and had such a unhelpful response from neuro.
MY understanding is that it can take time for lesions to appear after an attack/relapse and to properly diagnose someone needs to have had at least 2 episodes over time and for these to be showing on the scan as lesions. However I could be wrong so if anyone else out there who has a better explanation hopefully they will jump in and correct me
I think this is why some neuros take the “watch and wait” approach which can take a long time and repeated tests. It is very frustrating though and I understand your concerns.
That said, the neuro should have handled the situation better and given more explanaition as to why they think its not MS.
It is very much worth getting a 2nd opinion and I hope this is a better experience for you both.
Ooh, that’s what I’m on, watch and wait. Makes me laugh. Maybe he could come and do my shopping, cleaning and other duties while he waits eh? (Sorry, but I’m not amused by the process) keep us posted xx
So if they have ruled it out what else will they test for or are they just going to dump her? It’s all very well ticking one dx off but are they going to test for Lupus? Lyme Disease? Fybro? All mimick MS… surely they can’t just say “Oh well, sorry bye bye”??
can they? I hope not… I want answers! If my MRI comes back clear I will kick and shout for the other tests.
How frustrating for you. It’s such a long and frustrating process.
If the neuro you have seen is not an MS specialist, then he doesn’t know what the MS specialist would say. And it is extremely unhelpful, and frankly rude for the current neuro to suggest otherwise. It sounds almost as though he is trying to make you feel that you are imagining it all. Or that you are wasting the MS specialist’s time. You are not.
You deserve answers and you deserve to get to the bottom of things.
See what the specialist says and go from there. If you are not happy, then yes, I would seek help from outside the trust you are currently under.
They should be doing more testing to find out what is going on.
I am sorry that you are having such a frustrating time. There is such a lot of watching and waiting to be done when there is anything like this amiss, and it sounds as though there will be more to come. Of course you want answers quickly, but you do know that, if it is MS, it will reveal itself in its own good time, regardless of what the doctors say. It is a great pity when a message like, ‘Good news, Mrs X, none of your test results point towards MS,’ can be lost in translation and come out as ‘There’s nothing the matter with you, Silly!’ Ho hum. Neurologists do not always come at the top of the class for good bedside manner, alas.