Aa
Me...Venting...again...
I know you're probably all tired of my story (I know I am, lol) but I recently had a Neurologist tell me that I do not have a "textbook" case of M.S. and this is why my diagnosis took as long as it did.
To me, a “textbook” case of any disease is one where there is an established set of diagnostic criteria and it is being met by the patient.
Per the 2005 McDonald criteria (the diagnostic criteria used for diagnosing M.S.) A patient needs to present with one of several scenarios in order to be diagnosed with M.S. (see www.nationalmssociety.org/download.aspx?id=214 for complete list). I presented to the County Hospital with the following scenario:
1 attack; objective clinical evidence of 2 or more lesions.
In order to have a diagnosis with that scenario, the following would need to happen:
• Dissemination in time, demonstrated by:
MRI
OR
Second clinical attack
Seeing as how I did not have a second attack or enough time for dissemination in time, the Neurologist I was seeing thought it would be a good idea to have my CSF tested. In my CSF, several O-bands were found indicating an abnormal result. At this time, the Neurologist at the county identified me as a person with Relapsing/Remitting M.S. and prescribed Copaxone. He also referred me to an M.S. Specialist at UCSF.
I visited with the Specialist at UCSF who determined that I did not meet the clinical definition of a person with M.S. HOWEVER, seeing as how my MRI and CSF were extremely abnormal, he put me on Rebif, a stronger Disease Modifying Drug.
During this time, I had several neurological symptoms lasting for more than 24 hours in a time of approximately 3-4 months. None of these was serious or life threatening, but nonetheless they were neurological symptoms of the kind seen in patients with M.S. According to the McDonald criteria, each episode classifies an “attack”. If you remember from a few paragraphs ago, I needed a second clinical attack or more MRI findings. Subsequent MRIs were consistent with the first one, not showing any changes, BUT, I had several minor “attacks” lasting more than 24 hours. During this time, I did not have health coverage and was not seeing a Physician (Neurologist, or otherwise). However, I was still taking Rebif.
I finally obtained health coverage with an HMO several months later and immediately requested to see a Neurologist to discuss my symptoms and to hopefully receive an official diagnosis. The visit came just in time, as I had just taken my last dose of Rebif a short while before and could not afford to obtain more. Keep in mind, the Rebif was originally prescribed by an M.S. Specialist who thought it would be a good idea just based on my laboratory findings.
I saw this Neurologist at the HMO who tried to convince me that I should not be taking Rebif. I would not listen to his justification, but that did not matter. He would not continue to prescribe Rebif and I could not afford the $1600.00 monthly bill that the drug comes with. I was subsequently forced to discontinue my use of Rebif. During approximately 4-5 visits with this Neurologist, I told him of my many Neurological symptoms lasting for more than 24 hours. He dismissed them saying that they were not “definitive” of M.S. attacks. I’m not sure where he got his definition from, but I had done my research on WebMD.com, the Mayo Clinic, and National M.S. Society Websites. According to Web M.D. the following are typical “early symptoms of M.S.”
• Tingling
• Numbness
• Loss of balance
• Weakness in one or more limbs
• Blurred or double vision
• I had constant tingling and numbness in one of my feet for a period of over a month.
• I had occasional numbness in the same foot.
• I had loss of balance every morning (to the point of falling back on my bed when I would stand up). I had one period of 3 days where if I focused on a piece of paper a normal reading distance away for more than a few minutes, the words on the page would become blurry and hard to read. Sometimes the blurriness would continue for several minutes after focusing on something else.
One symptom not discussed here that is typical with M.S. is itching. This is not normal itching, this is the type of itching that causes many to scratch until it bleeds, and then to keep scratching. I have several scars on my feet from where I had been scratching until it bled and then continuing to scratch. There was no underlying fungus or other condition that would cause itching.
These symptoms were all dismissed as symptoms “not typical of M.S.” according to the HMO Neurologist.
In subsequent visits, I presented with the following symptoms during neurological examinations:
• Brisk Reflexes
• Head/Neck Tremor during examinations of my eyes
• Abnormal gait (to be fair, this was presumably from an “injury” sustained in the Army several years prior). However, this injury presented with no physical deformity other than 1 out of 3 bone scans being abnormal and is likely due to M.S. in my opinion.
These too were dismissed.
Although the HMO Neurologist admitted that I “definitely” had M.S. he said that he could not classify it as Relapsing/Remitting until there was a second “definitive” attack, and could not prescribe me with Rebif. However, the prescription of a Disease Modifying Drug is entirely up to the patient and Physician. Not all criteria has to be met in order to prescribe these types of drugs.
Please tell me how this is not a textbook case? With all of that above “speculation” in mind, here is my present disease course:
2 years after I first saw this Neurologist and he took me off of Rebif, the following occurred:
Double Vision lasting for several weeks
Trigeminal Neuralgia pain lasting for several hours (controlled by medication now)
Difficulty walking (heavy legs, loss of balance, fatigue)
When I say difficulty walking, this is kind of like saying it is “difficult” to move a mountain. I am now in a Powerchair (motorized wheelchair) for most of the day so that I can function somewhat normally and continue to perform the duties of my job.
Not to worry, I am now on Rebif, but I want those 2 years back!
To me, a “textbook” case of any disease is one where there is an established set of diagnostic criteria and it is being met by the patient.
Per the 2005 McDonald criteria (the diagnostic criteria used for diagnosing M.S.) A patient needs to present with one of several scenarios in order to be diagnosed with M.S. (see www.nationalmssociety.org/download.aspx?id=214 for complete list). I presented to the County Hospital with the following scenario:
1 attack; objective clinical evidence of 2 or more lesions.
In order to have a diagnosis with that scenario, the following would need to happen:
• Dissemination in time, demonstrated by:
MRI
OR
Second clinical attack
Seeing as how I did not have a second attack or enough time for dissemination in time, the Neurologist I was seeing thought it would be a good idea to have my CSF tested. In my CSF, several O-bands were found indicating an abnormal result. At this time, the Neurologist at the county identified me as a person with Relapsing/Remitting M.S. and prescribed Copaxone. He also referred me to an M.S. Specialist at UCSF.
I visited with the Specialist at UCSF who determined that I did not meet the clinical definition of a person with M.S. HOWEVER, seeing as how my MRI and CSF were extremely abnormal, he put me on Rebif, a stronger Disease Modifying Drug.
During this time, I had several neurological symptoms lasting for more than 24 hours in a time of approximately 3-4 months. None of these was serious or life threatening, but nonetheless they were neurological symptoms of the kind seen in patients with M.S. According to the McDonald criteria, each episode classifies an “attack”. If you remember from a few paragraphs ago, I needed a second clinical attack or more MRI findings. Subsequent MRIs were consistent with the first one, not showing any changes, BUT, I had several minor “attacks” lasting more than 24 hours. During this time, I did not have health coverage and was not seeing a Physician (Neurologist, or otherwise). However, I was still taking Rebif.
I finally obtained health coverage with an HMO several months later and immediately requested to see a Neurologist to discuss my symptoms and to hopefully receive an official diagnosis. The visit came just in time, as I had just taken my last dose of Rebif a short while before and could not afford to obtain more. Keep in mind, the Rebif was originally prescribed by an M.S. Specialist who thought it would be a good idea just based on my laboratory findings.
I saw this Neurologist at the HMO who tried to convince me that I should not be taking Rebif. I would not listen to his justification, but that did not matter. He would not continue to prescribe Rebif and I could not afford the $1600.00 monthly bill that the drug comes with. I was subsequently forced to discontinue my use of Rebif. During approximately 4-5 visits with this Neurologist, I told him of my many Neurological symptoms lasting for more than 24 hours. He dismissed them saying that they were not “definitive” of M.S. attacks. I’m not sure where he got his definition from, but I had done my research on WebMD.com, the Mayo Clinic, and National M.S. Society Websites. According to Web M.D. the following are typical “early symptoms of M.S.”
• Tingling
• Numbness
• Loss of balance
• Weakness in one or more limbs
• Blurred or double vision
• I had constant tingling and numbness in one of my feet for a period of over a month.
• I had occasional numbness in the same foot.
• I had loss of balance every morning (to the point of falling back on my bed when I would stand up). I had one period of 3 days where if I focused on a piece of paper a normal reading distance away for more than a few minutes, the words on the page would become blurry and hard to read. Sometimes the blurriness would continue for several minutes after focusing on something else.
One symptom not discussed here that is typical with M.S. is itching. This is not normal itching, this is the type of itching that causes many to scratch until it bleeds, and then to keep scratching. I have several scars on my feet from where I had been scratching until it bled and then continuing to scratch. There was no underlying fungus or other condition that would cause itching.
These symptoms were all dismissed as symptoms “not typical of M.S.” according to the HMO Neurologist.
In subsequent visits, I presented with the following symptoms during neurological examinations:
• Brisk Reflexes
• Head/Neck Tremor during examinations of my eyes
• Abnormal gait (to be fair, this was presumably from an “injury” sustained in the Army several years prior). However, this injury presented with no physical deformity other than 1 out of 3 bone scans being abnormal and is likely due to M.S. in my opinion.
These too were dismissed.
Although the HMO Neurologist admitted that I “definitely” had M.S. he said that he could not classify it as Relapsing/Remitting until there was a second “definitive” attack, and could not prescribe me with Rebif. However, the prescription of a Disease Modifying Drug is entirely up to the patient and Physician. Not all criteria has to be met in order to prescribe these types of drugs.
Please tell me how this is not a textbook case? With all of that above “speculation” in mind, here is my present disease course:
2 years after I first saw this Neurologist and he took me off of Rebif, the following occurred:
Double Vision lasting for several weeks
Trigeminal Neuralgia pain lasting for several hours (controlled by medication now)
Difficulty walking (heavy legs, loss of balance, fatigue)
When I say difficulty walking, this is kind of like saying it is “difficult” to move a mountain. I am now in a Powerchair (motorized wheelchair) for most of the day so that I can function somewhat normally and continue to perform the duties of my job.
Not to worry, I am now on Rebif, but I want those 2 years back!
Hi Fizzum,
Your Neurologist is probably reading old information about M.S. and positive/negative sensations. It is well known now that M.S. often causes neuropathic pain. I could be wrong here, but I remember reading somewhere that over 70% of people with M.S. experience pain. I am one that does, and thankfully it's one of the few things that my neurologists have not dismissed.
Kenny
Your Neurologist is probably reading old information about M.S. and positive/negative sensations. It is well known now that M.S. often causes neuropathic pain. I could be wrong here, but I remember reading somewhere that over 70% of people with M.S. experience pain. I am one that does, and thankfully it's one of the few things that my neurologists have not dismissed.
Kenny
I've experienced unbelievable itching too and not just a surface tickle. It's so deep in the flesh that the only way to get relief is to dig my nails in and really pinch. I really understand those of you who say you itch until you bleed and more.
My itching progressed into unrelenting stabbing pains in exactly the same place as the itching (on my forearm - from just below my elbow all the way down to my index and middle finger) which went on for months and months and really got me down. The pain was so bad and so frequent at times that it would stop me mid-sentence and really take my breath away.
My neuro said they don't normally associate pain with MS, it's normally a 'negative' sensation (i.e. loss of sensation as opposed to pain which is 'positive' - i.e. adding sensation) but how it can't be linked is beyond me, as it conincided with my last serious attack in Oct 09, which also affected my left arm amongst other symptoms.
I've had nerve conduction studies, ultrasound, x-rays - all negative. My GP thinks it could be mild tennis elbow... so I've stopped doing anything that might stress the tendons in the arm and have been taking anti-inflammatories every day for about 2 months now. It finally seems to be working. Thankfully the itching has subsided too except for on those two fingers but I still believe it's MS related.
In the main I do OK with this disease I guess. I was one of the 'lucky' ones in that my neuro gave me a diagnosis very quickly, based on previous presentations (optic neuritis in 06, numbness tingling in my legs over many months 2 years in a row, then multiple spasticity, weakness and gait problems towards the end of '09) and a conclusive MRI.
I've been living in Australia (though I'm British-born) for 3 years and was only diagnosed at Christmas 09, now injecting Betaferon every other day. Reading more and more about this disease and the different ways it's treated/dx'd elsewhere staggers me - I'm really humbled by how much suffering and anguish so many people go through to even get a neuro to take them seriously, let alone dx'd.
Thankfully forums like these exist to help us all share, learn - and vent - knowing that we're not alone and will be taken seriously, no matter what.
My itching progressed into unrelenting stabbing pains in exactly the same place as the itching (on my forearm - from just below my elbow all the way down to my index and middle finger) which went on for months and months and really got me down. The pain was so bad and so frequent at times that it would stop me mid-sentence and really take my breath away.
My neuro said they don't normally associate pain with MS, it's normally a 'negative' sensation (i.e. loss of sensation as opposed to pain which is 'positive' - i.e. adding sensation) but how it can't be linked is beyond me, as it conincided with my last serious attack in Oct 09, which also affected my left arm amongst other symptoms.
I've had nerve conduction studies, ultrasound, x-rays - all negative. My GP thinks it could be mild tennis elbow... so I've stopped doing anything that might stress the tendons in the arm and have been taking anti-inflammatories every day for about 2 months now. It finally seems to be working. Thankfully the itching has subsided too except for on those two fingers but I still believe it's MS related.
In the main I do OK with this disease I guess. I was one of the 'lucky' ones in that my neuro gave me a diagnosis very quickly, based on previous presentations (optic neuritis in 06, numbness tingling in my legs over many months 2 years in a row, then multiple spasticity, weakness and gait problems towards the end of '09) and a conclusive MRI.
I've been living in Australia (though I'm British-born) for 3 years and was only diagnosed at Christmas 09, now injecting Betaferon every other day. Reading more and more about this disease and the different ways it's treated/dx'd elsewhere staggers me - I'm really humbled by how much suffering and anguish so many people go through to even get a neuro to take them seriously, let alone dx'd.
Thankfully forums like these exist to help us all share, learn - and vent - knowing that we're not alone and will be taken seriously, no matter what.
Thanks for the support everyone, as long as I keep getting it, I'll keep venting, LOL.
Shell, RIS is different from CIS as "typical" M.S. symptoms are not present during the diagnostic process, although signs are seen in MRI and/or spinal tap. I agree that CIS and RIS patients alike should be given the option to make an informed decision to treat or not to treat based on their symptoms.
Sarah, I work on getting over the resentment every day, it is tough when I still have to live with the consequences, but I'm working on it :)
Red, I hate the textbook case crap as well. If there is reasonable suspicion in a Doctor's mind that there could be a condition that may harm the patient, I think the patient should have the right to be informed. (now THAT is a run on sentence!) As for the Doctor and/or HMO, I wonder if perhaps the HMO makes it policy not to treat RIS and/or CIS due to costs involved in DMDs. Sorry to hear about the itching, I know that really *****. Keep in mind, that there could also be a cause other than MS at fault. I would see my PCP if you haven't already...it may be treatable :)
Kenny
Shell, RIS is different from CIS as "typical" M.S. symptoms are not present during the diagnostic process, although signs are seen in MRI and/or spinal tap. I agree that CIS and RIS patients alike should be given the option to make an informed decision to treat or not to treat based on their symptoms.
Sarah, I work on getting over the resentment every day, it is tough when I still have to live with the consequences, but I'm working on it :)
Red, I hate the textbook case crap as well. If there is reasonable suspicion in a Doctor's mind that there could be a condition that may harm the patient, I think the patient should have the right to be informed. (now THAT is a run on sentence!) As for the Doctor and/or HMO, I wonder if perhaps the HMO makes it policy not to treat RIS and/or CIS due to costs involved in DMDs. Sorry to hear about the itching, I know that really *****. Keep in mind, that there could also be a cause other than MS at fault. I would see my PCP if you haven't already...it may be treatable :)
Kenny
Hi Ken
Phew....permission to vent given..I can understand your frustration and your anger about being taken off the DMD. I am guessing you feel as if you may not have experienced more deterioration/further relapses if you had stayed on it.
Well you cannot change the past and hard as this is to swallow, don't waste any more energy or resentment as what has been is gone. If you could rewind your life and had been on Rebif for these two years and had that crystal ball which could have shown you what may or may not have happened...it would be easier to accept where you are now. But where you are now is the present and it is better to focus on the future ensuring that you have the best quality possible to enjoy the life ahead of you. Try and be positive..it helps create better energy within you.
Hope this does not sound too confusing and I am sending you support.
Cheeers, Sarah
Phew....permission to vent given..I can understand your frustration and your anger about being taken off the DMD. I am guessing you feel as if you may not have experienced more deterioration/further relapses if you had stayed on it.
Well you cannot change the past and hard as this is to swallow, don't waste any more energy or resentment as what has been is gone. If you could rewind your life and had been on Rebif for these two years and had that crystal ball which could have shown you what may or may not have happened...it would be easier to accept where you are now. But where you are now is the present and it is better to focus on the future ensuring that you have the best quality possible to enjoy the life ahead of you. Try and be positive..it helps create better energy within you.
Hope this does not sound too confusing and I am sending you support.
Cheeers, Sarah
Ken -
You don't have to have definite MS dx to be treated. Good Docs will treat CIS, and if their only lingering determination is that you are not RRMS because clinically they can't be sure - then they can still prescribe DMD......
Good luck getting those 2 yrs back, lol - as if THATS not gonna happen, ha/ah (i'm kidding)
-shell
You don't have to have definite MS dx to be treated. Good Docs will treat CIS, and if their only lingering determination is that you are not RRMS because clinically they can't be sure - then they can still prescribe DMD......
Good luck getting those 2 yrs back, lol - as if THATS not gonna happen, ha/ah (i'm kidding)
-shell
Sorry for the multiple posts, I'm still on an adrenaline rush lol.
This new Neurologist is also trying to convince me now that I have a progressive case of M.S. as opposed to relapsing/remitting.
The numbness in my feet remitted for approximatley 1 year, it is partially back now. The itching in my feet has remitted completely. The loss of balance remains in the early morning, but had remitted for several months previously. The Optic Neuritis has remitted. The INO has remitted. The Trigeminal Neuralgia may have remitted (unknown as I am on a nerve blocker for it).
With all of this remission and not much progression, would anybody here agree that I am progressive? lol
This new Neurologist is also trying to convince me now that I have a progressive case of M.S. as opposed to relapsing/remitting.
The numbness in my feet remitted for approximatley 1 year, it is partially back now. The itching in my feet has remitted completely. The loss of balance remains in the early morning, but had remitted for several months previously. The Optic Neuritis has remitted. The INO has remitted. The Trigeminal Neuralgia may have remitted (unknown as I am on a nerve blocker for it).
With all of this remission and not much progression, would anybody here agree that I am progressive? lol
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This process from being alone to finally finding a diagnosis is really tough. I have heard of people being diagnosed in 2 weeks but I think that is so rare.
What's this about a 'textbook' case. I don't know why doctors are so reliant like that. They are afraid to 'think outside the box' so to speak although your symptoms to me are obvious. One thing I have learned here is that every step of the way could be a fight with insurance, doctors or medication coverage. It's like going into battle.
Personally I am glad that you brought up the itching part. I itch certain places until I bleed and then continue to itch. Good to know I am in good company.
As for the Rebif, can you go that doctor and ask him for your 2 years back? Can you let him know that he made a big mistake. Since he was affiliated with an HMO, I would bring the case to their attention. Let them know they can't get away with this. Is he getting kick-backs re: medications.
It is just a crime that you have had to fight for a diagnosis and then fight for medicine. geesh!!!!!
Red (I've been known to scare bad doctors and he is very, very, very bad-- ;-)
Just let me at him--bwha ha ha