steerpike
08-05-2006, 03:58 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.:eek:
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.:eek:
Sponsor
Ecks
08-08-2006, 02:57 PM
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 :)
Good luck with the MRI results; there's a very good chance you're okay :)
duttin
08-08-2006, 04:47 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
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, 04:20 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:)
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, 09:18 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
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
steerpike
08-11-2006, 01:40 AM
Hi Toni thanks for the really good advice again.
I've had the nerve conduction test, but not the EMG. I'm still trying to get ahold of my Neurologist-- to no avail so far. I would really like to have the remaining tests done.
MRI is clean at least-- for now.
I'm really curious, how did your symptoms begin? Were they constant or remitting? Did they present immediately after infection? How have they been progressing? What 'type' of MS do you have? What do you take medicine-wise, does it help at all?
Anyway, I'm feeling a little better at the moment. I have a bit more energy than usual... although my arms/legs are like lead a lot of the time. I can still get around with a cane.... which honestly isn't so bad.... so much better than being stuck at home! The brainfog hasn't been as bad lately either.
This week, I've been taking pharmaceutical grade Curcumin.... google the clinical trials. I've also been lucky enough to get my hands on a month's worth of Minocycline-- currently in the trial phase for MS treatment.
It's probably better than nothing until I'm diagnosed.
I've had the nerve conduction test, but not the EMG. I'm still trying to get ahold of my Neurologist-- to no avail so far. I would really like to have the remaining tests done.
MRI is clean at least-- for now.
I'm really curious, how did your symptoms begin? Were they constant or remitting? Did they present immediately after infection? How have they been progressing? What 'type' of MS do you have? What do you take medicine-wise, does it help at all?
Anyway, I'm feeling a little better at the moment. I have a bit more energy than usual... although my arms/legs are like lead a lot of the time. I can still get around with a cane.... which honestly isn't so bad.... so much better than being stuck at home! The brainfog hasn't been as bad lately either.
This week, I've been taking pharmaceutical grade Curcumin.... google the clinical trials. I've also been lucky enough to get my hands on a month's worth of Minocycline-- currently in the trial phase for MS treatment.
It's probably better than nothing until I'm diagnosed.
steerpike
08-11-2006, 03:15 AM
Oh yeah, forgot to mention, the MRI was of my brain and c-spine.
duttin
08-11-2006, 06:00 AM
Steerpike,
My first symptoms appeared after a failed lumbar surgery,I woke up after surgery and couldn't move my legs,one month later,I lost my vision,numbness through out body and every limb was extremly heavy and had little use of them.After 11 months I could walk without aide and everything returned to normal.My neurosurgeon told me then I had MS,I disregarded that do to the failed surgery.I had no other symptoms until Septemberr 2004 when I started getting muscle spasms that were relentless,this progressed to numbness and weakness on right side,difficult moving arm and leg,vision has decreased in both eyes,facial numbness,electrical shocks in neck and spine,leg numbness,brain fog and fatigue.My symptoms gradually increased and they were at there worst from November 2005 until Feb 2006,many have disappeared,but reappear.I still have chronic spasticity and numbness,blurred spot in central vision in left eye,ringing in right ear and constant buzzing down right side,the right leg buzzes constantly.I loss my balance in the dark.
I did have pnemonia(sp) and bronchitis all winter my immune system was shot.
I currently am taking (zanaflex,baclofen, quinine,)spastictity meds.folic acid,alpha liphoric acid,multi-vitamin,glutimine.I don't know if the homeopathic meds are helping or not.
I have PPMS,little research has been on this type of MS.The symptoms are here each day and somedays can be really hard,I have not given in or up.It has led to some disabilities,I wear leg braces and I have new limitations,but I can work around them.This disease has really took a toll on my right leg,it likes to drag,have a hard time with stairs,it will give out and I'll fall.
I'm glad your feeling better and getting around better.Have you tried any physical therapy?Light physical therapy can do wonders,I still do mine at home when I get a chance.Hang in there.Sometimes it can take time for disorders to present it self other than just symptoms.
Steerpike did you read the MRI reports yourself?Get copies,sometimes if there is one or two lesions ,neuro's disregard them beings they don't meet the MCdonald criteria.
Toni
My first symptoms appeared after a failed lumbar surgery,I woke up after surgery and couldn't move my legs,one month later,I lost my vision,numbness through out body and every limb was extremly heavy and had little use of them.After 11 months I could walk without aide and everything returned to normal.My neurosurgeon told me then I had MS,I disregarded that do to the failed surgery.I had no other symptoms until Septemberr 2004 when I started getting muscle spasms that were relentless,this progressed to numbness and weakness on right side,difficult moving arm and leg,vision has decreased in both eyes,facial numbness,electrical shocks in neck and spine,leg numbness,brain fog and fatigue.My symptoms gradually increased and they were at there worst from November 2005 until Feb 2006,many have disappeared,but reappear.I still have chronic spasticity and numbness,blurred spot in central vision in left eye,ringing in right ear and constant buzzing down right side,the right leg buzzes constantly.I loss my balance in the dark.
I did have pnemonia(sp) and bronchitis all winter my immune system was shot.
I currently am taking (zanaflex,baclofen, quinine,)spastictity meds.folic acid,alpha liphoric acid,multi-vitamin,glutimine.I don't know if the homeopathic meds are helping or not.
I have PPMS,little research has been on this type of MS.The symptoms are here each day and somedays can be really hard,I have not given in or up.It has led to some disabilities,I wear leg braces and I have new limitations,but I can work around them.This disease has really took a toll on my right leg,it likes to drag,have a hard time with stairs,it will give out and I'll fall.
I'm glad your feeling better and getting around better.Have you tried any physical therapy?Light physical therapy can do wonders,I still do mine at home when I get a chance.Hang in there.Sometimes it can take time for disorders to present it self other than just symptoms.
Steerpike did you read the MRI reports yourself?Get copies,sometimes if there is one or two lesions ,neuro's disregard them beings they don't meet the MCdonald criteria.
Toni
steerpike
08-11-2006, 07:23 AM
It's great that you still get around. I have to admit, lack of mobility/control is what scares me most. Though I managed to go on a low impact bike ride today.... my legs were crap after but they seem to be getting a little better with the exercise/stretching routines/current medications. :) I also have a bit more energy for now.
The Minocycline has been makes me dzzy/sick occasionally. Works on the rats for MS though/ Lyme too. I'm hoping to halt/slow/reverse any damage.
As far as the MRI report goes, it haven't seen it first hand, although I got a take-home copy of the scan pictures. Although I'm not a neuro-radiologist, I had a look at it and it was pretty clean. Using 'google image', I compared about 100 abnormal MRI's with mine-- the lesions on scans are blotchy, assymetrical, and bright white, mostly around the brain stem/spinal column Spinal problems = white blotches on the spinal cord. Mine looked good. Strangely. Guess I shouldn't be complaining.
Even if it is MS, I think we're probably better off than patients 10 years ago. A lot of interesting new treatments are on the horizon. Thank god. The internet is a huge help too... being able to connect with other patients/therapies and keeping up on the most cutting edge medical research (which a lot of doctors don't even know about).
Anyway, maybe you should give the curcumin a try.... I feel like a bit of a jerk recommending medicines to a veteran user/confirmed sufferer, but maybe it could help? I really don't know. Or some other natural anti-inflammatories.... like fish oils.... Works on rats, maybe on humans-- maybe not.
Do you take the sub-lingual B-12 too? I found the B12 cuts down on the brain fog a little.
The Minocycline has been makes me dzzy/sick occasionally. Works on the rats for MS though/ Lyme too. I'm hoping to halt/slow/reverse any damage.
As far as the MRI report goes, it haven't seen it first hand, although I got a take-home copy of the scan pictures. Although I'm not a neuro-radiologist, I had a look at it and it was pretty clean. Using 'google image', I compared about 100 abnormal MRI's with mine-- the lesions on scans are blotchy, assymetrical, and bright white, mostly around the brain stem/spinal column Spinal problems = white blotches on the spinal cord. Mine looked good. Strangely. Guess I shouldn't be complaining.
Even if it is MS, I think we're probably better off than patients 10 years ago. A lot of interesting new treatments are on the horizon. Thank god. The internet is a huge help too... being able to connect with other patients/therapies and keeping up on the most cutting edge medical research (which a lot of doctors don't even know about).
Anyway, maybe you should give the curcumin a try.... I feel like a bit of a jerk recommending medicines to a veteran user/confirmed sufferer, but maybe it could help? I really don't know. Or some other natural anti-inflammatories.... like fish oils.... Works on rats, maybe on humans-- maybe not.
Do you take the sub-lingual B-12 too? I found the B12 cuts down on the brain fog a little.
duttin
08-11-2006, 04:59 PM
Thats great you were out riding,thats improvement.I'll research curcumin.Don't feel like a jerk offering advice,thats what these boards are for.I seen my neuro today,he's a great guy,he said continue what I was doing,he didn't push the crabs.I have lost the reflex in my right leg,ankle has been gone.He said call if I flair up and when I need my meds refilled,he'll see me in 6 months.
Steerpike continue moving forward,each day may get easier
Toni
Steerpike continue moving forward,each day may get easier
Toni