Freakout! - Multiple Sclerosis Message Board

steerpike · 08-05-2006, 12:58 AM

Lately, my legs have been getting weaker; walking is becoming more and more difficult. I've also started getting joint pains in my knees and muscle pain in my legs and elsewhere Luckily, I can still walk short distances.... for now at least. I really wonder how much I can deteriorate, if there's a limit to my symptoms. So needless to say, I'm feeling really crappy, really depressed.

Waiting for the MRI results is really driving me crazy.... my neuro hasn't even gotten back to me with an appointment yet. If anybody remembers, this thing started about 2.5 months ago after what seemed like a 6 month incurable sore throat (which really hasn't gone away). I'm really afraid I've developed a kind of post-infectious primary progessive MS or als and that I'll become a test subject for all sorts of nasty chemotherapies, etc. Or worse yet, a useless vegetable on the fast track to an assisted breathing apparatus. I'm only 27! I had all sorts of plans to see the world... see more of Europe and Asia. I really have to wonder if I'll be seeing the inside of a nursing home instead, or worse yet a hospital!

Still hoping very hard it's Lyme or something treatable.

Ecks · 08-08-2006, 11:57 AM

Seems a bit unusual for MS to progress so quickly in 2.5 months. Doesn't sound like MS; maybe post-viral fatigue syndrome?

Good luck with the MRI results; there's a very good chance you're okay

duttin · 08-08-2006, 01:47 PM

Sterpike,

Call the radiologist facility and tell them you need to pick up a copy of the report,they will release it to you.Stressing out over the neuro not making an appointment and the mri results not back will cause symptoms to worsen.
If your legs continue to give out,go to your local ER.With you stating you had a severe sore throat and symptoms continuing have they tested you for epstein virus?This can lead to lesions(partial transverse myelititis or transverse myelititis) in the lumbar and thoracic spine and it can mimic ms or be a precursor for it.At 27 ALS is uncommon.
What your feeling is common,you'll get to see the world with MS or not.Be positive.

Toni

steerpike · 08-09-2006, 01:20 AM

Thanks for all the really great support.

I got my MRI back and it was *apparently* clean. I was bracing myself for much, much worse. So I guess the list of possible diseases narrows a bit; of course it could be my first MS episode, but you'd think with all the symptoms I'm having, there would at least 1 lesion. Any other people in the same boat?

I've also had a Nerve Conduction Test, (not an EMG) which came back normal as well. Blood counts are normal, inflammatory markers, ANA, b-12, chest x-ray, tsh, liver/kidney, mercury normal. Manual neurological examination is also ok. No strange reflexes.

I wonder what the chances of an abnormal EMG are when the nerve conduction test is ok?

I've heard that ALS usually presents more slowly and progressively, symptom-wise-- with no numbness, tingling, or cognitive problems. Mine came on very suddenly one day-- as if I'd been drugged. The cognitive symptoms hit first, with extreme numbness/weakness in the arms, fatigue, waves of vertigo, difficulty walking.... then the numbness/weakness spread to my face and legs.... now the cognitive problems have diminished slightly, along with the fatigue. My main symptom now is weakness in the arms and legs... along with occasional stuttering/stupidity. The face is currently fine, however.

So... is it Lyme, CFS, endrocrine? Any ideas? I'm going to ask for further thyroid testing, etc. Minocycline treatment perhaps? Who knows? I imagine the most likely candidate is post-viral, as CFS/ME'rs tend to have a lot of MS-like symptoms.

I've had a monospot, and several mono tests in the past-- all negative. Maybe it's time for another-- with EBV antibodies. Thanks Toni.

Lately, my legs are beginning to cramp; the muscles are particularly sore, as are several of my joints. I'm also having slight muscle spasms occasionally too. Still worried it could be ALS or something muscle related like Mysthenia Gravis, or whatever.

A clean MRI is good news though

duttin · 08-09-2006, 06:18 AM

Steerpike,

Your MRI,was it just the brain or did you have neck done also?Why did the DR only do the NCS and not the EMG part?EMG test the muscle activity and this could of explained why your muscles are giving you heck.You can have a normal ncs,but an abnormal emg.Did they do one side or both?

Push for a lumbar puncture and evoked potentals.LP will rule out past and present viral infections.The symptoms you are having,muscle weakness and cramps were my first symptoms of MS.LP showed highly elevated myelin basic protein,my body was attacking the myelin of my nerves,the first process of MS.After 2 LP the myelin is still high,no o-bands.My MRI was clean at first,2nd 1 occipital lesion and cortical widening---brain atrophy in occipital areas bilateral.
Steerpike,get copies of all your test,all you have to do is ask for them,tell them they are for personal use.Especially the MRI report.I had a tough time with DRs seen 11 until I was diagnosed,I was told it was depression,I was imagining my symptoms,it was because of previous back surgeries(lumbar)I didn't give up.I continued.I had days I cried because of the frustration of the DRs.They told me I was getting old.I'm 40.That really peed me off and I was more than determined to find out what was wrong with me..

As far as ALS,you really need to get that disease out of your head,that will eat you alive.ALS would present itself as atrophy of you muscles.One side first,usually a hand or foot,it travels one side of the body and then the other.

Try to hang in here,some diagnosis take time,its frustrating when we want answers now.My neuro told me that I havn't had a full blown attack yet.Oh yea,I'm looking forward to that.

There are meds to help with the cramps.Zanaflex and baclofen.If they persist discuss it with your DRs.

Toni