cotmh
06-17-2008, 04:16 PM
Hi, I have been diagnosed with a disease that is almost exactly like Ms, in fact the symptoms lists are so similar it is amazing. This might be long, but I hope you will read it and maybe clear up some things for me.
10 years ago I developed migraines and vertigo...I had a brain MRI I was tested and cleared of MS.
2006 - I was going to bed one night and an excruciating pain in my shoulder blade started, very intense. It went on for 2 months, it spread to my chest and then down my left arm. I saw many MD's none could explain it. Finally an MD gave me a cortisone shot into the shoulder blade and literally all heck broke loose, the pain spread from that point within weeks throughout my body. I had tremendous neuro pain, burning, shooting, stabbing, pins and needles and so much more. One nuerologist I spoke with (did not actually have an appt, we just talked) said that viruses HHV6, EBV had re-activated by the cortisone and although rare, I needed antivirals...which no doctor would give me, they just thought having viruses was too rare.
I had also at the time blurred vision, which has resolved, I had no reflexes in one leg, which has resolved. I have no 'sensory' problems...I feel everything!
I was led to an awesome Md who diagnosed me with a chronic bacterial disease (that is very simiar to MS and possibly treatable long term..I started on antibiotics and worsened,bu this was expected and I continue, this is when some issues started resolving). Then I stalled, progression just stopped, although I got no worse, I got no better.
I asked specifically several Md's if I could have MS ....they said no, but no real testing. I was scheduled for another brain scan, but didn't go through with it and have treated the disease I have for 2 years. Antibiotics make the pain 20 times worse.
This disease (and viruses were also proven later) is KNOWN for 'turning into MS'. I am at the point I wonder now if I have MS.
You are the experts....tell me if my symptoms sound like MS. I have much pain on the left side of my body, although it is everywhere, it is more predominant on the left side all the way down. I have polyneuropathy (everywhere) from scalp to feet that comes and goes, but I am never pain free...ever. I have horrible cerebellum (back of head) pain, neck pain, shoulder pain, balance problems, joint pain, sensitivity to warm baths it flares nerve pain, but not showers. Leg pain constantly, muscle mostly, sometime neuro and muscle, tingling that comes and goes throughout each day.
My main issue is polyneuropathy...some days are worse than others. Around "that time of the month" things can (but don't always) get worse. I never know day to day how bad I will feel. I am in constant pain - twitching muscles, burning muscles - all off and on different day to day.
I do methylcobalamin b12 injections (at high doses for almost 2 years) I was very D deficient, but that is being corrected and is likely normal now (I am due for another test) that hasn't seemed to help.
The disease I have has all the same symptoms - but my viral issues were a huge part of this my EBV titers IgG were 10,000 at one point, now 5,000 (I am on Valtrex) - and I know MS can be caused by bacterial/viral problems.
I also do not seem to be getting worse..I am just in pain all the time..2 years of this same thing...non-progressive, just stalled in this neuro pain state.
My questions:
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
Does this MUCH pain everywhere sound like MS?
Do antibiotics make the pain worse?
I thought MS was intermittent, this is not, it is everyday.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I do not have other MS symptoms, bladder or bowel issues and no weakness. I look and act totally normal - but am far from it.
Any advice? Your help is appreciated.
10 years ago I developed migraines and vertigo...I had a brain MRI I was tested and cleared of MS.
2006 - I was going to bed one night and an excruciating pain in my shoulder blade started, very intense. It went on for 2 months, it spread to my chest and then down my left arm. I saw many MD's none could explain it. Finally an MD gave me a cortisone shot into the shoulder blade and literally all heck broke loose, the pain spread from that point within weeks throughout my body. I had tremendous neuro pain, burning, shooting, stabbing, pins and needles and so much more. One nuerologist I spoke with (did not actually have an appt, we just talked) said that viruses HHV6, EBV had re-activated by the cortisone and although rare, I needed antivirals...which no doctor would give me, they just thought having viruses was too rare.
I had also at the time blurred vision, which has resolved, I had no reflexes in one leg, which has resolved. I have no 'sensory' problems...I feel everything!
I was led to an awesome Md who diagnosed me with a chronic bacterial disease (that is very simiar to MS and possibly treatable long term..I started on antibiotics and worsened,bu this was expected and I continue, this is when some issues started resolving). Then I stalled, progression just stopped, although I got no worse, I got no better.
I asked specifically several Md's if I could have MS ....they said no, but no real testing. I was scheduled for another brain scan, but didn't go through with it and have treated the disease I have for 2 years. Antibiotics make the pain 20 times worse.
This disease (and viruses were also proven later) is KNOWN for 'turning into MS'. I am at the point I wonder now if I have MS.
You are the experts....tell me if my symptoms sound like MS. I have much pain on the left side of my body, although it is everywhere, it is more predominant on the left side all the way down. I have polyneuropathy (everywhere) from scalp to feet that comes and goes, but I am never pain free...ever. I have horrible cerebellum (back of head) pain, neck pain, shoulder pain, balance problems, joint pain, sensitivity to warm baths it flares nerve pain, but not showers. Leg pain constantly, muscle mostly, sometime neuro and muscle, tingling that comes and goes throughout each day.
My main issue is polyneuropathy...some days are worse than others. Around "that time of the month" things can (but don't always) get worse. I never know day to day how bad I will feel. I am in constant pain - twitching muscles, burning muscles - all off and on different day to day.
I do methylcobalamin b12 injections (at high doses for almost 2 years) I was very D deficient, but that is being corrected and is likely normal now (I am due for another test) that hasn't seemed to help.
The disease I have has all the same symptoms - but my viral issues were a huge part of this my EBV titers IgG were 10,000 at one point, now 5,000 (I am on Valtrex) - and I know MS can be caused by bacterial/viral problems.
I also do not seem to be getting worse..I am just in pain all the time..2 years of this same thing...non-progressive, just stalled in this neuro pain state.
My questions:
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
Does this MUCH pain everywhere sound like MS?
Do antibiotics make the pain worse?
I thought MS was intermittent, this is not, it is everyday.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I do not have other MS symptoms, bladder or bowel issues and no weakness. I look and act totally normal - but am far from it.
Any advice? Your help is appreciated.
Sponsor
MSJayhawk
06-17-2008, 05:56 PM
I look and act totally normal - but am far from it.
Any advice? Your help is appreciated.
Well I am certainly happy you look and act normal!!;););)
It is difficult to deal with, but MS can be a daily thing if you are already in a later stage of MS. No where do I see that you have had an MRI. Have you seen a Neurologist dealing with MS?
MS symptoms can be mimicked by other diseases. You need to run the gauntlet of tests to get a firm diagnosis.
It sounds like you need to follow through with the tests for MS while eliminating all other possibilities. If you are in a later stage of MS, life is still livable. I have been battling daily since October 2, 2002. I consider ever day since as a blessing. Just keep on keeping on!:angel::angel::angel:
Any advice? Your help is appreciated.
Well I am certainly happy you look and act normal!!;););)
It is difficult to deal with, but MS can be a daily thing if you are already in a later stage of MS. No where do I see that you have had an MRI. Have you seen a Neurologist dealing with MS?
MS symptoms can be mimicked by other diseases. You need to run the gauntlet of tests to get a firm diagnosis.
It sounds like you need to follow through with the tests for MS while eliminating all other possibilities. If you are in a later stage of MS, life is still livable. I have been battling daily since October 2, 2002. I consider ever day since as a blessing. Just keep on keeping on!:angel::angel::angel:
MSNik
06-17-2008, 06:31 PM
My questions:
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
Does this MUCH pain everywhere sound like MS?
Do antibiotics make the pain worse?
I thought MS was intermittent, this is not, it is everyday.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I do not have other MS symptoms, bladder or bowel issues and no weakness. I look and act totally normal - but am far from it.
ANA blood test can not prove MS, however it can rule out several other diseases which mimic MS
This much pain doesnt sound like MS, however MS can cause pain and its completely different for everyone, so therefore, pain initself, cannot be ruled out for you
Antibiotics generally help MS flareups, as far as making the individual feel better, they do NOTHING for solving the problem which is causing the flare..Ive never heard of anyone taking antibiotics and feeling worse..
Steroids are the treatment of norm for MS...because MS is inflamation of the nerves, specifically the central nervous system, steroid treatment is THE ONLY treatment for flareups which is normally used...again, Ive never head of anyone getting worse from them, I have however, heard of people not having any help from steroids...also, keep in mind that normal usage of steroids in MS patients is 1000 mgs done intervenously for 5 days..
Not everyone has MS sytmoms which you mention...I dont have bowel or bladder sytmoms, neither do many of my MS friends...
Looking and acting normally is a HUGE part of MS and one of the main hurdles we deal with.
Truthfully, it doesnt sound like you have MS...but a Neurologist is the only way to find out...starting with MRIs and ending with spinal taps- theres no other way to dx it...in the meantime, there are literally hundreds of things to rule out.
Good luck.
what exactly did you say you were dx with?
nikki
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
Does this MUCH pain everywhere sound like MS?
Do antibiotics make the pain worse?
I thought MS was intermittent, this is not, it is everyday.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I do not have other MS symptoms, bladder or bowel issues and no weakness. I look and act totally normal - but am far from it.
ANA blood test can not prove MS, however it can rule out several other diseases which mimic MS
This much pain doesnt sound like MS, however MS can cause pain and its completely different for everyone, so therefore, pain initself, cannot be ruled out for you
Antibiotics generally help MS flareups, as far as making the individual feel better, they do NOTHING for solving the problem which is causing the flare..Ive never heard of anyone taking antibiotics and feeling worse..
Steroids are the treatment of norm for MS...because MS is inflamation of the nerves, specifically the central nervous system, steroid treatment is THE ONLY treatment for flareups which is normally used...again, Ive never head of anyone getting worse from them, I have however, heard of people not having any help from steroids...also, keep in mind that normal usage of steroids in MS patients is 1000 mgs done intervenously for 5 days..
Not everyone has MS sytmoms which you mention...I dont have bowel or bladder sytmoms, neither do many of my MS friends...
Looking and acting normally is a HUGE part of MS and one of the main hurdles we deal with.
Truthfully, it doesnt sound like you have MS...but a Neurologist is the only way to find out...starting with MRIs and ending with spinal taps- theres no other way to dx it...in the meantime, there are literally hundreds of things to rule out.
Good luck.
what exactly did you say you were dx with?
nikki
cotmh
06-17-2008, 07:26 PM
Thank you very much for your replies. I think it confirms I am possibly treating the right disease.
If antibiotics help MS...that is not me. I have been diagnosed with LSCLD (Late stage Chronic Lyme Disease) for which there is no cure either. Because the bacteria is similar to syphilis (a spiral shaped bacteria) and also like sarcodisis it actually hurts to kill it...isn't that horrible? Can you imagine taking something that makes you feel a hundred times worse over and over for years and only hope for remission..it is not curable in late stages, we only hope for remission by killing off as much bacteria as possible as with any spirochete bacteria (spiral shaped). This disease mimics MS very closely - and since it is bacterial, steroids can kill us or harm anyone with a bacterial infection severely.
You have helped me...I hope as my body continues to fight the bacteria and viruses it doesn't start attacking itself and turn autoimmune.
I think I mentioned I did have a brain MRI many years ago - 10 years ago when migraine and vertigo set in...the neurologist cleared me of MS then. But I am still on the look out for MS now, especially since they don't know exactly what causes it and it looks likely they think a bacterial infection and/or viral....and I have both. I feel like I am walking a fine line.
Thanks so much, like I said I think it confirms it may not be MS at this point.
Blessings and wellness to you.
If antibiotics help MS...that is not me. I have been diagnosed with LSCLD (Late stage Chronic Lyme Disease) for which there is no cure either. Because the bacteria is similar to syphilis (a spiral shaped bacteria) and also like sarcodisis it actually hurts to kill it...isn't that horrible? Can you imagine taking something that makes you feel a hundred times worse over and over for years and only hope for remission..it is not curable in late stages, we only hope for remission by killing off as much bacteria as possible as with any spirochete bacteria (spiral shaped). This disease mimics MS very closely - and since it is bacterial, steroids can kill us or harm anyone with a bacterial infection severely.
You have helped me...I hope as my body continues to fight the bacteria and viruses it doesn't start attacking itself and turn autoimmune.
I think I mentioned I did have a brain MRI many years ago - 10 years ago when migraine and vertigo set in...the neurologist cleared me of MS then. But I am still on the look out for MS now, especially since they don't know exactly what causes it and it looks likely they think a bacterial infection and/or viral....and I have both. I feel like I am walking a fine line.
Thanks so much, like I said I think it confirms it may not be MS at this point.
Blessings and wellness to you.
Nenu
06-17-2008, 07:49 PM
Lyme is on the blood work check list of 'others' to rule out during the diagnostic process for MS, as it does very much resemble MS with the symptoms.
MSNik
06-17-2008, 08:15 PM
yes, Lyme does very closely present like MS and its extremely important to rule it out before dx MS...however, in reality, the two diseases have very little in common other than the way they present..
im sorry you are dealing with this- and if they are positive it is Lyme- then you might find some answers on healthboards Lyme board..its very helpful.
Best of the best to you..and I wouldnt worry about MS- theres not too much that you are describing which points that direction..of course, you can always request new MRIs and spinal taps to rule it out or dx MS for sure..
im sorry you are dealing with this- and if they are positive it is Lyme- then you might find some answers on healthboards Lyme board..its very helpful.
Best of the best to you..and I wouldnt worry about MS- theres not too much that you are describing which points that direction..of course, you can always request new MRIs and spinal taps to rule it out or dx MS for sure..
Canadian gal
06-18-2008, 11:34 AM
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
There are no blood tests that can assist with the dx for MS, just MRIs and LP (oligonclonal bands, sometimes considering myelin basic protein levels).
(There are other tests that can "help" with the dx; Evoked Potentials, etc. ...)
As far as I've heard, the most reliable for Lyme is out of a company in California called Igenex.
Does this MUCH pain everywhere sound like MS?
MS can cause this much pain, and once the damage is done (whether from MS or any other disease process), it can be ongoing and permanent.
Do antibiotics make the pain worse?
I have never heard of antibiotics making the pain worse, for MS OR for Lyme. In fact, I thought that's how they normally treated Lyme. :confused:
I thought MS was intermittent, this is not, it is everyday.
MS can cause symptoms every day, definitely. If we have RRMS, the worst of the symptoms can come on for a period of time, and then remit . . . but we can be left with some permanent damage even in this stage of the disease. Symptoms can be stirred up by over-heating, stress, infection, etc. too. The categories of SPMS and PPMS are progressive, in that the symptoms don't ever remit significantly.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I have heard of this with Lyme, but not with MS. Not everyone with MS will see any advantage from steroids, and they may cause considerable short and long-term side-effects, but I have not heard of anyone with MS who has experienced a "body-wide explosion" after using them. Could you describe that, please?
I do not have other MS symptoms, bladder or bowel issues and no weakness.
Many people with MS don't have these particular symptoms either.
From your description, it does sound more like Lyme, but even Neurologists have a hard time deciding sometimes. In fact, some believe they are one in the same disease.
I know that Lyme can have brain lesions, but I am fairly certain there are no spinal lesions with Lyme. A C and T spine MRI would confirm whether you have spinal lesions.
I think O-bands (in a LP) can also be found in Lyme disease, but I am not certain on that.
Personally, I would follow up with a test from that company I mentioned earlier, and would undergo a spinal MRI.
Cherie
There are no blood tests that can assist with the dx for MS, just MRIs and LP (oligonclonal bands, sometimes considering myelin basic protein levels).
(There are other tests that can "help" with the dx; Evoked Potentials, etc. ...)
As far as I've heard, the most reliable for Lyme is out of a company in California called Igenex.
Does this MUCH pain everywhere sound like MS?
MS can cause this much pain, and once the damage is done (whether from MS or any other disease process), it can be ongoing and permanent.
Do antibiotics make the pain worse?
I have never heard of antibiotics making the pain worse, for MS OR for Lyme. In fact, I thought that's how they normally treated Lyme. :confused:
I thought MS was intermittent, this is not, it is everyday.
MS can cause symptoms every day, definitely. If we have RRMS, the worst of the symptoms can come on for a period of time, and then remit . . . but we can be left with some permanent damage even in this stage of the disease. Symptoms can be stirred up by over-heating, stress, infection, etc. too. The categories of SPMS and PPMS are progressive, in that the symptoms don't ever remit significantly.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I have heard of this with Lyme, but not with MS. Not everyone with MS will see any advantage from steroids, and they may cause considerable short and long-term side-effects, but I have not heard of anyone with MS who has experienced a "body-wide explosion" after using them. Could you describe that, please?
I do not have other MS symptoms, bladder or bowel issues and no weakness.
Many people with MS don't have these particular symptoms either.
From your description, it does sound more like Lyme, but even Neurologists have a hard time deciding sometimes. In fact, some believe they are one in the same disease.
I know that Lyme can have brain lesions, but I am fairly certain there are no spinal lesions with Lyme. A C and T spine MRI would confirm whether you have spinal lesions.
I think O-bands (in a LP) can also be found in Lyme disease, but I am not certain on that.
Personally, I would follow up with a test from that company I mentioned earlier, and would undergo a spinal MRI.
Cherie