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Some MS Questions
I'm on the quest to find out what's wrong with me, so I've been asking some dr's on MH and another site for any suggestions and most point to CFS/FM and MS.
I did this question CFS/FM checklist and found I have alot of the symptoms, but reading on MS I have signs of that also. I know from researching, they could cross over and I have both or one could mimic the other; so it sounds like it's going to be difficult to dx.
This all started in Nov 1997 when I was almost 30, when I developed Group Beta Streptococcus which turned into blood sepsis. I developed hypothyroidism in 1998, and was treated for a year but then my lvls were fine (or so I thought).
I had an ablation done in August 2009 that my heart stopped 3 times during the procedure and I was dx malignant heart arrhythmia's/VT and have developed pretty severe symptoms since surgery. Over the past 3 months, symptoms have gotten severely worse and I'm having more widespread deep aches & pain and sometimes I can barely sit, stand, walk or lay without severe pains along with a constant headache and nausea.
I saw a neurologist back in Feb 2010 and had some bloodwork done and was supposed to get a EMG but lost my health insurance. This stands out - show localized decreases in nerve function. This may include decreased or abnormal sensation, decreased ability to move a part of the body, speech or vision changes, or other loss of neurologic functions. My left leg, hand and r eye has had some problems of weakness, twitching, numbness etc which she said may be due to decreased nerve function/neuropathy.
I can't have an MRI due to a pacemaker/icd implant I had to have done due to my arrhythmia's, so how is a dr going to dx me? is a CT going to be as reliable?
I'm not on any meds right now and just got new insurance; going to see a new pcp Jan 21st so any suggestions or help for that appt is much appreciated =)
I did this question CFS/FM checklist and found I have alot of the symptoms, but reading on MS I have signs of that also. I know from researching, they could cross over and I have both or one could mimic the other; so it sounds like it's going to be difficult to dx.
This all started in Nov 1997 when I was almost 30, when I developed Group Beta Streptococcus which turned into blood sepsis. I developed hypothyroidism in 1998, and was treated for a year but then my lvls were fine (or so I thought).
I had an ablation done in August 2009 that my heart stopped 3 times during the procedure and I was dx malignant heart arrhythmia's/VT and have developed pretty severe symptoms since surgery. Over the past 3 months, symptoms have gotten severely worse and I'm having more widespread deep aches & pain and sometimes I can barely sit, stand, walk or lay without severe pains along with a constant headache and nausea.
I saw a neurologist back in Feb 2010 and had some bloodwork done and was supposed to get a EMG but lost my health insurance. This stands out - show localized decreases in nerve function. This may include decreased or abnormal sensation, decreased ability to move a part of the body, speech or vision changes, or other loss of neurologic functions. My left leg, hand and r eye has had some problems of weakness, twitching, numbness etc which she said may be due to decreased nerve function/neuropathy.
I can't have an MRI due to a pacemaker/icd implant I had to have done due to my arrhythmia's, so how is a dr going to dx me? is a CT going to be as reliable?
I'm not on any meds right now and just got new insurance; going to see a new pcp Jan 21st so any suggestions or help for that appt is much appreciated =)
I'll keep this in mind, hopefully my new pcp will be a good one and I won't have to go years like I did with my heart problems in finding out what's wrong...or hearing it's because you're stressed, suffer anxiety etc etc whatever else cop out they use when they don't know what's wrong.
My last cardiologist told me I expected too much out of him and he wasn't a magician and couldn't CURE me or my autonomic dysfunction/heart problems and that I certainly made his job hard didn't I? lol then told me I needed to exercise even though he knew I was fainting with a pacemaker/icd and my system could not function with any type of exertion or it shuts down.
ugh what is wrong with doctors? exactly NancyT what do they NOT get? I don't even want to start trying to figure out what else is wrong with me, but I have to - I can't keep living in constant pain and turmoil - is there a doctor count thread here? lol I'll be sure to post how many dr's it takes to give me a proper diagnosis =)
on top of it all, I was told be a SSA psych dr I was TOO strong to be suffering depression! ugh let him walk a day in my shoes then tell me that; 1 day of dealing with my Autistic son and he would go home crying :P
My last cardiologist told me I expected too much out of him and he wasn't a magician and couldn't CURE me or my autonomic dysfunction/heart problems and that I certainly made his job hard didn't I? lol then told me I needed to exercise even though he knew I was fainting with a pacemaker/icd and my system could not function with any type of exertion or it shuts down.
ugh what is wrong with doctors? exactly NancyT what do they NOT get? I don't even want to start trying to figure out what else is wrong with me, but I have to - I can't keep living in constant pain and turmoil - is there a doctor count thread here? lol I'll be sure to post how many dr's it takes to give me a proper diagnosis =)
on top of it all, I was told be a SSA psych dr I was TOO strong to be suffering depression! ugh let him walk a day in my shoes then tell me that; 1 day of dealing with my Autistic son and he would go home crying :P
LA wrote, quoting a neuro:
" you do not have MS. You are well! Be HAPPY and go live your life."
WHY do so many doctors NOT get it? People can fully get on with their lives only when they no longer have to devote a lot of psychological resources to wondering every day what's wrong with you, what (if anything) you should do next, how to get doctors to take you seriously, how to explain your situation to people in your life, etc.
And it's harder to treat and cope with the symptoms when you don't know the cause and have to wonder whether you're getting the correct or best treatment.
When a doctor says what that one did, either they're SADLY misguided and oblivious, or else they REALLY mean to say, "Go away and don't bother me anymore. I don't want to figure out what's wrong with you."
" you do not have MS. You are well! Be HAPPY and go live your life."
WHY do so many doctors NOT get it? People can fully get on with their lives only when they no longer have to devote a lot of psychological resources to wondering every day what's wrong with you, what (if anything) you should do next, how to get doctors to take you seriously, how to explain your situation to people in your life, etc.
And it's harder to treat and cope with the symptoms when you don't know the cause and have to wonder whether you're getting the correct or best treatment.
When a doctor says what that one did, either they're SADLY misguided and oblivious, or else they REALLY mean to say, "Go away and don't bother me anymore. I don't want to figure out what's wrong with you."
I don't know how I left this out but I did go to a real MS clinic after having seen to other MS neuros.
I didn't go to the clinic at first because it was not covered by my insurance. All of the testing except for the LP had been done so I was diagnosed with MS on my first visit to the MS clinic.
The clinic closed their doors because the doctor retired. He was 75 at the time. So I had to find another doctor.
In total I saw 4 neuros before I ended up with the one I am at now. This one is a good doctor.
He told me at my first appointment if I did not have MS I did have SOMETHING and he would work to figure it out.
LA
I didn't go to the clinic at first because it was not covered by my insurance. All of the testing except for the LP had been done so I was diagnosed with MS on my first visit to the MS clinic.
The clinic closed their doors because the doctor retired. He was 75 at the time. So I had to find another doctor.
In total I saw 4 neuros before I ended up with the one I am at now. This one is a good doctor.
He told me at my first appointment if I did not have MS I did have SOMETHING and he would work to figure it out.
LA
Beware of Neurologists who say they are MS specialists but are not up to date on the latest Mc Donald criteria.
I had insurance issues also and it took me a while to get to a REAL MS clinic.
The other two Neuro's I saw who said they were MS specialists ignored everything but my MRI. I did have an enhancing lesion but it was not in the "right" place accourding to them.
But my neuro exam did show a problem.
I ended up seeing a new Neurologist do to some other circumstances and was undiagnosed "because the MRI does not support MS even though the clinical exam does, therefor you do not have MS. You are well! Be HAPPY and go live your life." that is what this nut said to me.
Left that guy REALLY fast! Went to a friends neuro and he did a lumbar puncture. AH HA! 14 o bands in the spinal fluid not present in the serum sample. I was diagnosed with MS again.
So, I was diagnosed with an abnormal VEP due to Optic Neuritis, clinical symptoms, and a Lumbar puncture. Of course this was after ruling out other possibilities.
Hope this helps.
LA
I had insurance issues also and it took me a while to get to a REAL MS clinic.
The other two Neuro's I saw who said they were MS specialists ignored everything but my MRI. I did have an enhancing lesion but it was not in the "right" place accourding to them.
But my neuro exam did show a problem.
I ended up seeing a new Neurologist do to some other circumstances and was undiagnosed "because the MRI does not support MS even though the clinical exam does, therefor you do not have MS. You are well! Be HAPPY and go live your life." that is what this nut said to me.
Left that guy REALLY fast! Went to a friends neuro and he did a lumbar puncture. AH HA! 14 o bands in the spinal fluid not present in the serum sample. I was diagnosed with MS again.
So, I was diagnosed with an abnormal VEP due to Optic Neuritis, clinical symptoms, and a Lumbar puncture. Of course this was after ruling out other possibilities.
Hope this helps.
LA
thanks for the responses; wow it's even more confusing than trying to figure out other problems I've had.
ack I see I missed something - my left hand is probably the worst and was the first thing I noticed after surgery - numbness to where I've burned myself cooking many many times; scars are all over my left hand. I don't have any feeling in my hand at points; but then it will be fine - that's what confusing; it's not like that all the time.
my left leg is the same, it doesn't always hurt or stay numb - but when it does, I have no feeling and can't walk or sometimes I'll trip from the numbness starting, then this all gets better and start again; hand/leg/eye isn't always at the same time - no pattern to any of my madness :(
I just got on the new PCIP insurance for pre exisiting conditions - luckily only a $2,000 ded per year, but I'm not sure what all they cover; so I'll find out soon =)
ack I see I missed something - my left hand is probably the worst and was the first thing I noticed after surgery - numbness to where I've burned myself cooking many many times; scars are all over my left hand. I don't have any feeling in my hand at points; but then it will be fine - that's what confusing; it's not like that all the time.
my left leg is the same, it doesn't always hurt or stay numb - but when it does, I have no feeling and can't walk or sometimes I'll trip from the numbness starting, then this all gets better and start again; hand/leg/eye isn't always at the same time - no pattern to any of my madness :(
I just got on the new PCIP insurance for pre exisiting conditions - luckily only a $2,000 ded per year, but I'm not sure what all they cover; so I'll find out soon =)
Unfortunately MS is hard to diagnose and is not a set of symptoms. It is very complicated and has to be figured out by Neurologists. There are many things which have the same symptoms as MS, called mimics.
Your PCP could help you with symptoms but that really has to be between you and him. There is no one size fits all treatment for any of us who are even diagnosed.
A CT can't diagnose MS. You would have to go to an MS Specialist not just a regular Neurologist and they would have to work around the MRI, they did not have MRIs for most of the history of MS. They usually do lots of blood work to rule out other diseases, emg, possibly a lumbar puncture, and other tests. MS Specialists usually see you every six months over time to look for changes. In some cases it can take years. With out the MRI it makes it harder because they have to prove the MS to the Insurance Companies. It is not impossible.
I just want to be honest about what you are up against. I thought when I started the process I would get a quick diagnosis and the years went on and I thought I was being blown off by the Neurologists but then I found out that was normal they just take there time that is how Neurologists work.
Also do not be afraid to find out how much each test is going to cost you before you have it done. What the insurance will not pay. Depending on your copays and deductables they can get pricey with some plans. You find this out through your insurance not the Doctor or Hospital. You can even shop around for better prices. Some local hospitals charge more than other over your insurance.
Good luck.
Alex
Your PCP could help you with symptoms but that really has to be between you and him. There is no one size fits all treatment for any of us who are even diagnosed.
A CT can't diagnose MS. You would have to go to an MS Specialist not just a regular Neurologist and they would have to work around the MRI, they did not have MRIs for most of the history of MS. They usually do lots of blood work to rule out other diseases, emg, possibly a lumbar puncture, and other tests. MS Specialists usually see you every six months over time to look for changes. In some cases it can take years. With out the MRI it makes it harder because they have to prove the MS to the Insurance Companies. It is not impossible.
I just want to be honest about what you are up against. I thought when I started the process I would get a quick diagnosis and the years went on and I thought I was being blown off by the Neurologists but then I found out that was normal they just take there time that is how Neurologists work.
Also do not be afraid to find out how much each test is going to cost you before you have it done. What the insurance will not pay. Depending on your copays and deductables they can get pricey with some plans. You find this out through your insurance not the Doctor or Hospital. You can even shop around for better prices. Some local hospitals charge more than other over your insurance.
Good luck.
Alex
CT is pretty useless at lesion detection. They can do a Lumbar Puncture and check for OCBs. MS is a disease of the Central Nervous system. Your symptoms are asymmetrical - Left leg, right eye. If your eye problem is related to ON, they could do a VEP to see if you have/had optic neuritis.
When doctors can't use MRI, they have to fall back on the Revised McDonald Criteria and look for two clinical attacks in two neurologic areas. Looks like you have had specific attacks (left leg and right eye). If they happened and were separated by 30 or more days, that would fit the requirements for dissemination in space and time.
There is no requirement for MRIs to be diagnosed with MS under the Revised McDonald Criteria, but positive MRIs support the diagnosis.
When doctors can't use MRI, they have to fall back on the Revised McDonald Criteria and look for two clinical attacks in two neurologic areas. Looks like you have had specific attacks (left leg and right eye). If they happened and were separated by 30 or more days, that would fit the requirements for dissemination in space and time.
There is no requirement for MRIs to be diagnosed with MS under the Revised McDonald Criteria, but positive MRIs support the diagnosis.
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