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fed up

Sorry to whinge when I should be jumping for joy! Evoked potentials normal ....so back to square one I feel like a complete hyperchondriac! Gabapentin has helped with pins and needles cramps burning pain ...mostly ....but musnt get hot or stressed because they come back.  Worst cramp I had ever had on friday with my whole leg contracting inwards with my foot at a 90 degree angle v painful. I am now being sent for a lumbar mri...? why I dont know  thorasic mri poor quality with he thinks some area of inflammation but couldnt be absolutely sure. What should I ask for next? I feel like crying tonight when I know I should be happy that this test is normal like many of you guys on here I just want someone to tell me why I cant run anymore,why i feel so tired, why I have got all these wierd things happening including my feet going numb  etc etc... sorry to moan and thank you for taking the time to read my post. Sarah  xx

....just wait for the results of the lumbar puncture and the mri Sarah. When I was diagnosed in 2003 one test was not as conclusive as the other, but I was still diagnosed with MS (also on the basis of some issues I had in the past, eg optic neuritis 8 years before diagnosis).

 

I was shocked and relieved at the same time, as I suddenly had an answer to many unanswered questions from the (very) past ....

Take care.

 

Jos

 

Its a lumbar mri tho not puncture… Also have had optic neuritis …thank you for replying I no I shouldn’t be whinging when there are so many on here worse if than me xx

Hi Sarah

You're not whinging so don't worry about that. Limboland is a real tough place to be stuck in and can make us think and feel all sorts of things. But the truth is, no self respecting neuro (or any other kind of Doc come to that) is going to commit to a diagnosis of any kind without enough evidence to support it. So yep, it can feel like we're on a treadmill - not getting anywhere. But we are, because each test that we have is going towards ruling something out. It's a bit like collecting pieces -much like a jigsaw - because there's no 'one' test for ms. We just have to keep chipping away at it until something comes up.

In the meantime, you're right that stress and other factors have their part to play in how we feel - many things can exacerbate symptoms.That and the fact that symptoms of this nature can be linked with lots of other conditions too. It's very difficult but the only thing you can do is to go with the flow and see what each test throws up. Try to get into the habit of keeping brief notes of what's happening (if you're not doing so already that is) making sure that your neuro is kept up to speed - and just taking one step at a time really.

I hope that you start to get somewhere Sarah, hopefully the next mri will shed some light on things for you. 

Good luck

Debbie xx

Thank you so much for your support it means so much. I feel a bit brighter today. I am not a patient person by nature and having to wait for answers is just such a test of that! My Neuro and GP have been fantastic all the way and I should be  and am so grateful that they are taking me seriously.  I think I was so sure the conduction test would come back abnormal as they needed more amplitude (???) to get the nerves twitching on my rt than my left so when it came back negative I felt like I was back to square one!

Thanks again for your replies and hugs they have helped me xxx

I just wanted to second everything Debbie said, including the point that you are not whinging! No one in your shoes would feel happy about not getting the answer yet :-(

 

What to ask for next is maybe a repeat of the thoracic scan? Can you call the neuro's secretary and ask for it to be added to the current referral to MRI? You could also ask if he could request thinner slices this time. One of the problems with spinal scans is that the spinal cord is only the thickness of your thumb - unless you use thin slices (and, ideally, thin slices that go across the spine as well as slices that go up and down the spine), there is only a poor chance of seeing inflammation.

 

The other thing that you could ask about is AMN. This is associated with men, but does occur in women. AMNers often get optic neuritis, but their scans can be clear. There is a blood test, but I think genetic testing is more accurate for women. http://www.x-ald.nl/clinical-diagnosis/female-carriership/

 

Hang in there!

Karen x

 

 

Thank you Karen for your suggestions. Han actually going to look in to seeing how much mri of thorasic spine with contrast may cost locally…I am seeing my gp in the morning do will see if he will do the blood test for the AMN …have seen the film Lorenzos oil …never even crossed my mind. Thank goodness for your knowledge. Thanks to all Xxxxx

Hi Sarah,

There are many things that can affect your spinal cord but won't show up on tests. Your neuro must have noticed signs on your neuro exam that made him order spine MRI's.

Usually with problems in the central nervous system the problem is in the cervical or thoracic areas. The lumbar area is not part of the central nervous system.

I've now been in limbo for fourteen years. I've had ON twice and have an upper motor neuron problem in my spinal cord. I need to use a wheelchair as I have spastic paresis.

Previously I've had 95% diagnosis it's MS. I then had a probable diagnosis of a hereditary neurogenetic disorder.

Have you been tested for neuromyelitis optica? Optic nerve and spinal cord problems can also be found Sjorgrens syndrome, Systemic lupus, Hughes syndrome, Lyme disease and even in Hereditary Spastic Paraplegia.

Vitamin B12 defficiency left too long can cause subacute combined degeneration of the spinal cord and optic neuritis. Have your B12 levels been checked?

There is also a condition called Lebers Optic Neuropathy. This is usually found in men but they have now found that women who have it present with a more MS like problem.

It is frustrating when tests aren't clear cut. Sometimes you have to be your own advocate and find information yourself. It sounds as though you are having spasms. I would mention these to your GP as there are meds that can help.

Jacqui

xx

What a great, informative post Jacqui - thanks! I learned a lot (never even heard of Lebers).

Karen xx

Thank you jacqui. I have had blood tests for b12 Hughes lupus not sure about the others so will ask. Was hoping to see my gp today but he wasn’t in (we have to book on the day not in advance and I only have fridays off!) I must admit I burst into tears as I now have to wait another week as I don’t want to see one who doesn’t no me. However I pulled myself together and went on a baking frenzy and then a long snooze! Thanks for your info I will go armed next week xx

Thank you jacqui. I have had blood tests for b12 Hughes lupus not sure about the others so will ask. Was hoping to see my gp today but he wasn’t in (we have to book on the day not in advance and I only have fridays off!) I must admit I burst into tears as I now have to wait another week as I don’t want to see one who doesn’t no me. However I pulled myself together and went on a baking frenzy and then a long snooze! Thanks for your info I will go armed next week xx