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MRI clear! What next?

New diagnosis and before diagnosis
#1

Been to see Gp today only to be told that despit both her and Neuro thinking it was MS my MRI is clear.

Told her so was my sisters and she has had RRMS for 15 years, she said that she also had a paiteint with ms with a clear MRI.

I know I should be pleased but she says there is nothing more she can do, said what do I have to do then, wait for a big relapse? Will see Neuro for follow up in 6 months and have appt at eye clinic, rheumatology was cancelled by hospital, she said she would find out why, I needed to see someone as something going on.

Having trouble with my legs now and day to day tasks and looking after my children. Not had a full nights sleep for 6 months.

Was on beta blockers, moved on to an epilepsy drug, but not working to help get rid of numbness and headache, told me to stop taking them, think I was put on them cause they thought it was MS.

In end left feeling like a hypocondriact with a prescription for Amtriamine to help with depression, leg jerks and sleep, go back in a month.

Going to try them, but think what’s point in going back? They say they can’t do anything.

The other part of me thinks maybe go down the herbal route? Or push my self hard, do too much and not rest and see if that brings on an attack? They will have to believe me then?

Asked about CFCs, she said Neuro should have picked that up.

Hubbie is pleased MRI is clear and says lets just treat it as cfs!

Think I am going mad!

#2

I can understand that you are frustrated Apple Pad. But do not push yourself or do anything that will make you feel unwell. Do try the new tablets, and also the herbal rout if you feel it’s right for you, BUT. Please be careful as some herbal remedies can effect prescription medication.

I would go back and see GP when you have been on the new meds for a month. You may or may not see an improvement, a least you’ll know.

By then your neuro appointment will be around the corner. Keep a record of your symptoms to take with you.

Don’t feel like a hyocrondriact your symptoms are real.

Good luck
Ppx

#3

I have had a clear mri as well .But due for my follow up app with my neuro next thursday.Im hoping he will do more tests as i just cannot stand feeling like this for much longer .

Im feeling really sorry for you :( have you got no follow up neuro app ?

Sam x

#4

I read something the other day that, while not exactly helpful(!), does apply to everyone stuck in limbo. It is:

Time is the greatest diagnostician of all.

In other words, whatever it is, it will show itself one day.

 

For now, please push for whatever help and support you need and please try the amitriptyline (a lot of MSers get a great deal of relief from it). I'm not sure what you mean by the herbal route, but if it's MS you have, I'm afraid it won't do you a whole lot of good. You'd be better to try to exercise as much as you can, eat healthily, take vitamin D3, not smoke (if you do currently) and generally be kind to yourself (rest when you need to, pace yourself, prioritise tasks and drop the unimportant ones,...).

It's great that your neuro is keeping you on his books. It's also great that you have a supportive GP.

Hang in there!

Karen x

#5

So true Karen. Time will reveal all.

#6

Will just have to see how I go. Forgot to add that my sister has MS and guess what? clear MRI. She has been dx 14 years. My Dr knows this.

Neuro said he would see me again in 6 months, so if that’s from first appt and not scan, should be end of Oct.

At moment just going to wean myself off my Prozac, Dr said I needed to do this before I start the Amtriptyline. Stop the decaff, had a limited success with bladder issues. Try not to take anything else which may or may not react/ give side effects. Keep a diary of any new symptons, so I have some thing to show the Neuro.

Try and keep away from the Drs until my appt in a month, to see if Amtriptyline has helped.

#7

This could be utter rubbish, but is there any chance that your sister doesn't actually have MS and that the two of you have the same, non-MS, condition? Have you asked about the possibility of genetic conditions??

Karen x

#8

My sister lives abroad so it’s difficult.

Her critical illness insurance paid out, so I am sure they though she had MS, also MS drugs have helped and steroids. her LP was positive.

#9

Seriously, whatever you have is what you have, doesn't matter what they call it. At least you can get some meds to help!

My MRI was clear, the neuro has written me off, told me my GP can give me meds for the symptoms and the neuropathic shock pain in my face is TN.  Which my GP agrees isn't and no, there's nothing HE can give me for the TN pain in my face that drags my forehead down in places too, since the TN nerves don't GO UP THERE!

I have a new symptom, it's like I've been slowly stabbed with a hot poker in the middle of my big toe nail. Burny.  This is in the foot I get neuropathic shocks in, mind.  And the GP can't give me anything for those either.

Or the numb gums or numbness to the knees.

ROFL.  

 

 

 

 

#10

[quote=“Apple pad”] My sister lives abroad so it’s difficult. Her critical illness insurance paid out, so I am sure they though she had MS, also MS drugs have helped and steroids. her LP was positive. [/quote] Just taking the devil’s advocate position here, but none of that actually proves someone has MS so I’d still raise the question if I were you, unless no one else in the family (now or previously) has weird symptoms - then it’s not at all likely. If you do both have MS, then it is very interesting that two sisters both have clear MRIs - there is bound to be a researcher somewhere who would love to study you! (No one really knows why it happens.) Karen x

#11

Hi ,

Did you have a lumber pun cture? I have a clear mri but positive lumber puncture for oligoclonal bands. I was diagnosed then undiagnosed then rediagnosed so it was a nightmare to get my hjead around it. Mine started with walking difficulties which have gradually got worse. I hope you get sorted. It is rare to have a negative mri but its possible especially if a leison is in the spine. Hopefully it isnt ms and will resolve in time.Take care and dont push yourself listen to your body. I know it isnt easy especially with children and its a stressful time but try and get treatment for your symptoms.

#12

Hi, I am in a similar situation here except that my MRI picked up one lesion. One lesion is not enough for a diagnosis. I had a LP recently and am going to see my neuro end of this month for the results. When I saw my neuro for the MRI results she did say that she would be "Keeping her eye on me for the next two years". I know there isn't anything she can do right now and it is probably the same for me as it is for you...a waiting game for a relapse, if it ever hapepns.

I am just going to try get on with my life as best I can, and while it will always be in the back of my mind, I have to learn to leave it there and move on. Some days it's hard but I can try at least.

Trying to carry on with the knowledge that you may be living with untreated MS is pretty damn scary but having only one attack and one lesion is not getting me anywhre right now. 

Like karen said, whatever it is will show itself at some point.

 

 

#13

First of all......you are NOT mad! This limbo lark is enough to drive you mad.....only not in the true sense of the word.

Clear MRIs do not mean you definitely do not have MS.

But the one good thing MRIs do, is tell your neuro you don`t have a tumour!

There is a myriad of conditions which could be causing your sympoms.

I do think you ought to go for your next appointment. Trying to bring on an attack yourself isn`t wise. How would you do that anyhow?

In the 14 yrs i`ve been waiting for a definite dx, I`ve seen umpteen neuros, had so many tests i could write a paper on them.

I sometimes feel there is no point in putting myself through them and having to tell yet another medic what happened when. But |i really do want to know what is wrong with me.

From 2003 - 2010 I had a 95% dx of PPMS and was `happy` with that. Until a new neuro stuck his oar in big time and turned my world upside down with a genetic disorder dx. This was then dismissed, but has reared it`s ugly head again recently.

Do they really know anything?

I know how you feel, but stick with it, eh?

luv Pollx

#14

Spoken to my sister this morning.

Her MRI was clear but went on to wake up one morning unable to walk. Went into hospital given IV steroids, managed to walk out of hospital by herself. Dx of MS given

Been RRMS and tried several drugs, inc trials.

Let’s hope it is not MS for either of us, but some form of genetic thing, a dx for me might mean a new dx for her and a cure for both of us?

#15

I wish you much luck Apple and hope you get to the bottom of it all soon... for you both.

#16

To clear things up, I do not want to bring on an attack.

I just ment, try and live a ‘normal’ life and do daily tasks, even if I have to really push myself.

Also not to take any medication or take any supplements, which might mask symptons or produce side effects.