Is this familiar?

[goldengirly]

I am being investigated for MS.

I am 25 years old who has been diagnosed with generally mild (but fluctuating) respiratory weakness (I have a ventilator), of which the cause is currently unknown. I also have some degeneration of my vision.

In December, I had a strange episode where, a few days into a virus, I was struck down by extreme weakness, buckling at knees etc, vision loss, loss of bladder control, eye pain, and although I felt scarily numb under my skin, I had the most excruciating abnormal sensations - prickling, tingling, electric shock sensations over my entire body. Around my neck I feel this strange ripping/pulling sensations. Also my sense of temperature was gone. Every touch on my skin felt freezing, even hot shower water etc.

Most of the symptoms attributable to this weird couple of weeks resolved. However, I still have the excruciating stabbing/tingling pains and a feeling of ripping and tightness around the skin on my neck - I often wear a scarf to 'trick' myself into thinking the sensation is normal. Thank heavens for Pregabalin, which is the only thing that makes this tolerable. Even a small reduction leaves me in agony! The breathing problems and weakness remain, particularly in hands.

My doc is looking into MS but as it is NHS it is taking forever. I guess my questions are:
- does this SOUND like it could be MS?
- is it normal in MS for these sensations/neuropathic pain to be over your entire body?
- is respiratory muscle weakness a feature in the early stages? I have heard it is not.
- is degeneration of vision normal?

Feeling very alone and the wait is driving me mad. Any opinion on this would be so much appreciated! x

[kwarendorf]

Congratulations!

As o reflexes, my left leg is very brisk, my right leg does not move. My left leg is the one more effected by my MS.

[goldengirly]

Clear MRI!

[goldengirly]

Thank you Kyle. I guess I'll just have to wait and see - the waiting game is no fun!

My neurologist has noted brisk reflexes in the knees, and elbows mildly brisk. Is this common in MS? it is my understanding that reflexes are usually absent or decreased?  

Thanks for all the advice :)

[kwarendorf]

No, it's not safe to say No Lesions on MRI = No MS

There are many cases in which lesions exist but are not captured on MRI scans. It can be due to the strength of the MRI the position of the lesion etc.

On the other hand if you have MS you definitely have lesions, visible or not. There are folks here who have been diagnosed but whose MRI's were clear.

Kyle

[goldengirly]

Thank you Kyle, I hope you're right! I met the lady beforehand, she was  indeed a radiologist, but I probably moved or something and like you said, she needed better pictures! Thanks for the reassurance.

Great news to hear your LP was ok - you don't often hear anything but horror stories when it comes to that. I might have to man up and go for it...

Is it safe to say that if my MRI is clear, I absolutely don't have MS?

[kwarendorf]

I think the second trip into the tube had more to do with unclear images than them seeing anything dodgy :-) The person on the other side of the glass is most likely a technician, not a radiologist. They can tell if the images are clear or not, but not whats on the images :-)

As to the other tests, they are often used in diagnosing MS. I didn't have any evoked potential tests, but I did have an LP. Mine was completely painless so I didn't need and pain meds.

Blood tests, EMGs, EPs, LPs, and MRIs are the standard testing tools for MS DX.

Kyle

[goldengirly]

Hi Lisa. Thank you for your message. Oddly enough, I have actually been diagnosed with ocular myasthenia gravis, but the neurologist is utterly convinced that breathing issues are not related, and of course, myasthenia does not cause any pain, particularly neuropathic pain. Utterly confused as to how I can have myasthenia AND muscle weakness (inc respiratory) and yet they are not linked! I guess I'm just doubly blessed?!

Thank you for the tip - I will try and get into the habit of keeping all my reports etc.

x

[LisaJF]

Sounds to me more like Myasthenia Gravis than MS, but then  again, there's always a chance respiratory can be involved in MS.  Depends on where the lesions are.

Make sure you get a copy of the disc and written report of your MRI.  It is imperative you have copies of all your laboratory and diagnostic tests with you when you start seeing specialists.  Makes your life easier as well as the doctor youre seeing.

Good luck with everything and let us know how things go!

Welcome to the forums by the way!

Lisa

[goldengirly]

Thank you for replying Kyle :)

My EMG and nerve studies were normal. The only evoked potential was an SSEP which was clear - are these tests good for ruling out MS?

I did have a full brain and spine MRI this week. A little worried as after an hour, (having started at brain, working her way down to spine), the radiographer said "this is your last scan". That one finished and she piped up again with "we're just going to get a few more photos of your neck to be thorough" and I got brought all the way down the other end of the scanner again for another little while. Hoping they just forgot to take some photos and didn't see anything too dodgy! No idea when I get the results...

Are there any other tests I should request? I am unable to take pain relief due to the respiratory muscle weakness so I am avoiding the LP like the plague!! x

[kwarendorf]

Hi GG- Welcome and sorry you found us :-)

A lot of what you describe could certainly be attributable to MS. Given that MS attacks you central nervous system, there is virtually no part of you body that is immune from MS. If you ask 100 of us what our MS is you will hear 100 different stories.

I'm glad that you doc is investigating MS as a possible cause of your symptoms. Some of the tests that are used to rule out MS mimics like Lyme disease, evoked potential studies including visual evoked potential, and lumbar puncture aka LP or spinal tap.

Keep us posted on your journey.

Kyle