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Anyone here still in Denial?
I am still in Denial
I was dx in Jan with RRMS. had spent years of not feeling well, neck/arm pain numbness tingling down my arm, blurry vision, severe migraines, frequence/leaking urine, spasms/pain in legs and calves.
I had a Neurologist that I saw for my migraines, and anytime I would mention a new symptom, he told me that it was just from the migraines. So I went to a pain doctor, who did an MRI, I had two herniated discs in my neck. He told me that was what my neck arm pain was from. I had cervical steroid injections. No help at all. In fact, over time things got worse and I started to have double vision too.
I went to a new neurologist. After a very thorough neuro exam that revealed: positive babinski, positive hoffman's sign, hyperactive deep tendon reflexes, absent abdominal reflex, ataxic gait and nystagmus....the doctor told me right then and there that he thought MS, but that he had to rule everything else out.
He sent me to an opthalmologist....who dx Optic Neuritis (mild). Evoked potentials...anormal SSEP, blood....low Vit D and Vit B12, and MRI that showed small hyperintensity subcortical white matter lesions.
That is when I was DX.
Since then I have had an MRI of my lumbar spine, I have 3 herniated discs there.
Here is my thought process.
pain neck/arm....? herniated discs
freq/leak urine....? five kids
abdormal SSEP....? hernatied discs
small hyperintensity subcortical white matter lesions.... ? migraines
leg/calf pains cramps/spasms....? herniated discs
You see, I try to find a reason for each of my symptoms that does not have to be MS. Not sure if the herniated discs can cause the abnormal neuro exam??
Anyone else question things like this?
Guess it is just Denial!!
I was dx in Jan with RRMS. had spent years of not feeling well, neck/arm pain numbness tingling down my arm, blurry vision, severe migraines, frequence/leaking urine, spasms/pain in legs and calves.
I had a Neurologist that I saw for my migraines, and anytime I would mention a new symptom, he told me that it was just from the migraines. So I went to a pain doctor, who did an MRI, I had two herniated discs in my neck. He told me that was what my neck arm pain was from. I had cervical steroid injections. No help at all. In fact, over time things got worse and I started to have double vision too.
I went to a new neurologist. After a very thorough neuro exam that revealed: positive babinski, positive hoffman's sign, hyperactive deep tendon reflexes, absent abdominal reflex, ataxic gait and nystagmus....the doctor told me right then and there that he thought MS, but that he had to rule everything else out.
He sent me to an opthalmologist....who dx Optic Neuritis (mild). Evoked potentials...anormal SSEP, blood....low Vit D and Vit B12, and MRI that showed small hyperintensity subcortical white matter lesions.
That is when I was DX.
Since then I have had an MRI of my lumbar spine, I have 3 herniated discs there.
Here is my thought process.
pain neck/arm....? herniated discs
freq/leak urine....? five kids
abdormal SSEP....? hernatied discs
small hyperintensity subcortical white matter lesions.... ? migraines
leg/calf pains cramps/spasms....? herniated discs
You see, I try to find a reason for each of my symptoms that does not have to be MS. Not sure if the herniated discs can cause the abnormal neuro exam??
Anyone else question things like this?
Guess it is just Denial!!
Yes, I am in Denial. Lovely weather, here in Denial. I keep trying to tell myself that's it's a great place to visit but I really shouldn't live here.
If I ever wanted to be in denial it only takes my eyes opening in the morning to put it to rest. The pain is unrelenting. No denial there.
anger, bargaining,depression, denial and acceptance----we go in and out of these at different levels throughout our lives. Red
thank you all so much for your wealth of information.....I am glad to know that I am not the only one that questions their diagnosis.
Hopefully, I will soon progress out of the denial stage. What's next? Anger?
Hopefully, I will soon progress out of the denial stage. What's next? Anger?
yes, absolutely. I am still 'probable MS' with first incident a year ago. I haven't had a second incident so am not officially diagnosed. I have one brain lesion and significant transverse myletis. I have lingering symptoms and haven't had a day where I feel 'normal' in over a year. I'm also on copaxone and neurontin. Yet somehow, I can't bring myself to say MS out loud. Clearly, still in denial even though as I type this my hands feel numb, my neck hurts, and I could crawl back in bed and sleep the rest of the day.
COMMUNITY LEADER
Being in denial is one of the steps on the road to acceptance, its also perfectly normal to question during the process, we all do it but when all sx lead to an ultimate conclusion, acceptance finally arrives.
I was constantly trying to squeeze my sx into something other than MS, the only thing close enough was Lupus, i was hoping for something like a stubbed toe but alas no, MS is like a neon sign flashing here, here and here, oh and dont forget here lol. I had a lot of T2 hypertenses lesions show up on my one and only 1.5T MRI (w/o contrast), clinical neurological sx consistent with MS etc. The radiologist noted early in the report that Ischemic small vessel disease was inconsistent with my age, it doesn't specifically mention where, apart from white matter and deep white matter, only mentions the one area noted to not have a lesion, which happens to be specificely connected to MS, the corpus callosum.
So even though the referal was to investigate MS, the radiologist concluded (i've assumed because i didn't have a visible lesion in the CC) that even though it would be inconsistent with my clinical sx, history and age that the lesions are from 'CHRONIC small vessel disease'. I strongly believe from all the evidence, that the conclusion is an error, a misdiagnosis but I cant get past it. For a start my clinical neurological sx shouldn't be happening if that conclusion was accurate. Second, to be 'chronic' it goes beyond normal aging and irrelevant lesions. Third, I still need to be 20+ years older than I am. Fourth, MS is the most common explanation for my age group and chronic ISVD would be a RARE explanation. I could go on but hmmmmmm someone is in denial but it sure aint me lol.
I no longer try to find an alternative dx since I was dx with unilateral adult acquired nystagmus, double vision and a pale optic disc in my right eye, that sort of pushes Lupus off the possible table and doesn't leave anything but MS, I think that means i'm no longer in denial and in the acceptance faze though i'm sure when I do end up with a dx of MS i'll burst into tears and go through the hole process again.
If I look at your alternatives in relation to my same sx, I end up seeing MS or a lot of coincidences......
the pain neck/arm....? herniated discs
[same sx but no herniated discs]
freq/leak urine....? five kids
[same sx but only 2 kids and 11 years apart, no sx until over 8yrs after his birth]
abdormal SSEP....? hernatied discs
[sx constistent nerve pathway damage but not tested, still no herniated disc. i'm not sure a herniated disc could affect your nerve pathways of the somatosensory system]
small hyperintensity subcortical white matter lesions.... ? migraines
[got them too, chronic but never had a migraine]
leg/calf pains cramps/spasms....? herniated discs
[same sx but no herniated disc]
I can totally understand where your coming from, but you would have no explanation for some of the other things, eg herniated disc would not explain the dx eye things, neither would migrain but MS would explain it all (your last list is more telling) with out excluding this or that. In RRMS there is the illution that you'll always get back to normal between relapses, totally sx free but that isn't real. Each attack can leave that once repairable area a little more damaged until its no longer repairable and that sx then stays.
From my understanding if your having new sx arrive, lasting longer than 24 hours, its a real attack, if old sx come when your stressed or tired (hot etc) but resolve when not, its a exaserbation or none attack and is exactly what happens when you have demylenating disease such as MS. Never stop questioning, its what makes us human!
Take care..........JJ
I was constantly trying to squeeze my sx into something other than MS, the only thing close enough was Lupus, i was hoping for something like a stubbed toe but alas no, MS is like a neon sign flashing here, here and here, oh and dont forget here lol. I had a lot of T2 hypertenses lesions show up on my one and only 1.5T MRI (w/o contrast), clinical neurological sx consistent with MS etc. The radiologist noted early in the report that Ischemic small vessel disease was inconsistent with my age, it doesn't specifically mention where, apart from white matter and deep white matter, only mentions the one area noted to not have a lesion, which happens to be specificely connected to MS, the corpus callosum.
So even though the referal was to investigate MS, the radiologist concluded (i've assumed because i didn't have a visible lesion in the CC) that even though it would be inconsistent with my clinical sx, history and age that the lesions are from 'CHRONIC small vessel disease'. I strongly believe from all the evidence, that the conclusion is an error, a misdiagnosis but I cant get past it. For a start my clinical neurological sx shouldn't be happening if that conclusion was accurate. Second, to be 'chronic' it goes beyond normal aging and irrelevant lesions. Third, I still need to be 20+ years older than I am. Fourth, MS is the most common explanation for my age group and chronic ISVD would be a RARE explanation. I could go on but hmmmmmm someone is in denial but it sure aint me lol.
I no longer try to find an alternative dx since I was dx with unilateral adult acquired nystagmus, double vision and a pale optic disc in my right eye, that sort of pushes Lupus off the possible table and doesn't leave anything but MS, I think that means i'm no longer in denial and in the acceptance faze though i'm sure when I do end up with a dx of MS i'll burst into tears and go through the hole process again.
If I look at your alternatives in relation to my same sx, I end up seeing MS or a lot of coincidences......
the pain neck/arm....? herniated discs
[same sx but no herniated discs]
freq/leak urine....? five kids
[same sx but only 2 kids and 11 years apart, no sx until over 8yrs after his birth]
abdormal SSEP....? hernatied discs
[sx constistent nerve pathway damage but not tested, still no herniated disc. i'm not sure a herniated disc could affect your nerve pathways of the somatosensory system]
small hyperintensity subcortical white matter lesions.... ? migraines
[got them too, chronic but never had a migraine]
leg/calf pains cramps/spasms....? herniated discs
[same sx but no herniated disc]
I can totally understand where your coming from, but you would have no explanation for some of the other things, eg herniated disc would not explain the dx eye things, neither would migrain but MS would explain it all (your last list is more telling) with out excluding this or that. In RRMS there is the illution that you'll always get back to normal between relapses, totally sx free but that isn't real. Each attack can leave that once repairable area a little more damaged until its no longer repairable and that sx then stays.
From my understanding if your having new sx arrive, lasting longer than 24 hours, its a real attack, if old sx come when your stressed or tired (hot etc) but resolve when not, its a exaserbation or none attack and is exactly what happens when you have demylenating disease such as MS. Never stop questioning, its what makes us human!
Take care..........JJ
It was the lesions around the corpus callosum that gave me my diagnosis, too. I can see why your neuro ruled out migraines.
Be careful with the hot baths! I have learned from this site that some people have suffered permament symptoms from a hot bath. This is probably not common, but it was a shock to me to hear that there was a real possibility of this happening.
I do have a set of symptoms that don't go away. I do get new ones, though. Some stay, some take there time to go away, and other symptoms completely go away. Some symptoms come back when I'm tired or stressed but go away within 24 hours.
Be careful with the hot baths! I have learned from this site that some people have suffered permament symptoms from a hot bath. This is probably not common, but it was a shock to me to hear that there was a real possibility of this happening.
I do have a set of symptoms that don't go away. I do get new ones, though. Some stay, some take there time to go away, and other symptoms completely go away. Some symptoms come back when I'm tired or stressed but go away within 24 hours.
frequent falling . . . . . . . . . . no...but lose of balance often, tripping
muscle cramps and increased tone . . . . yes, severe in my calves
Gait and balance disorders . . . yes
intolerance to heat . . . . . . not sure.....but it does make me very weak and tired
blurred vision . . . . yes and double vision
nystagmus . . . . . . . . . . . . . . . . yes
unexplained mental loopiness . . . yes...and word find problems
life-limiting fatigue and weakness . . . yes
sleeping our lives away . . . . . if only I could
muscle mass loss . . . . . . . . . . . . . . . . yes....atrophy of my R upper arm and R calf
frequency and "accidents" . . . . . . . . . . . yes
constipation . . . . . . . . . . . . . . . . . . . . .yes....severe
positive Romberg . . . . . . . . . . .yes and positive hoffmans, babinski, absent abdominal
hyper reflexes . . . . . . . . . . . . yes
inability to heel-to-toe walk . . . . . . . yes....moderate ataxia
muscle cramps and increased tone . . . . yes, severe in my calves
Gait and balance disorders . . . yes
intolerance to heat . . . . . . not sure.....but it does make me very weak and tired
blurred vision . . . . yes and double vision
nystagmus . . . . . . . . . . . . . . . . yes
unexplained mental loopiness . . . yes...and word find problems
life-limiting fatigue and weakness . . . yes
sleeping our lives away . . . . . if only I could
muscle mass loss . . . . . . . . . . . . . . . . yes....atrophy of my R upper arm and R calf
frequency and "accidents" . . . . . . . . . . . yes
constipation . . . . . . . . . . . . . . . . . . . . .yes....severe
positive Romberg . . . . . . . . . . .yes and positive hoffmans, babinski, absent abdominal
hyper reflexes . . . . . . . . . . . . yes
inability to heel-to-toe walk . . . . . . . yes....moderate ataxia
In the 3rd line of my response above to you I meant "MS" - not "MA" (although I hope you still do have your MA - because everyone (especially those of us with neuro symptoms) needs the great support of a loving mother!
WAF
WAF
How do you respond to heat? Try a nice hot humid sauna or bath and see what it does to your vision, your walking, other MS symptoms. That might help convince you that you really do have MA. Used to be (before the fancy-schmancy MRIs came along) they used to use heat to help pin down MS. I wish they'd get back to that, because then this Limbolander would actually qualify for the MS diagnosis!
There are many of us in denial, just like you, only we are without MS diagnoses! We are denying the MS-diagnosis-denial by our neuros. Here's how we equate things:
frequent falling . . . . . . . . . . ? MS
muscle cramps and increased tone . . . . ? MS
Gait and balance disorders . . . ? MS
intolerance to heat . . . . . . ? MS
blurred vision . . . . ? MS
nystagmus . . . . . . . . . . . . . . . . ? MS
unexplained mental loopiness . . . ? MS
life-limiting fatigue and weakness . . . ? MS
sleeping our lives away . . . . . ? MS
muscle mass loss . . . . . . . . . . . . . . . . ? MS
frequency and "accidents" . . . . . . . . . . . ? MS
constipation . . . . . . . . . . . . . . . . . . . . . ? MS
positive Romberg . . . . . . . . . . . . ? MS
hyper reflexes . . . . . . . . . . . . ? MS
inability to heel-to-toe walk . . . . . . . ? MS
So Daisy Girl you're not alone. Incidentally, congrats on your diagnosis! Don't let Mayo take it away from you!
WAF
There are many of us in denial, just like you, only we are without MS diagnoses! We are denying the MS-diagnosis-denial by our neuros. Here's how we equate things:
frequent falling . . . . . . . . . . ? MS
muscle cramps and increased tone . . . . ? MS
Gait and balance disorders . . . ? MS
intolerance to heat . . . . . . ? MS
blurred vision . . . . ? MS
nystagmus . . . . . . . . . . . . . . . . ? MS
unexplained mental loopiness . . . ? MS
life-limiting fatigue and weakness . . . ? MS
sleeping our lives away . . . . . ? MS
muscle mass loss . . . . . . . . . . . . . . . . ? MS
frequency and "accidents" . . . . . . . . . . . ? MS
constipation . . . . . . . . . . . . . . . . . . . . . ? MS
positive Romberg . . . . . . . . . . . . ? MS
hyper reflexes . . . . . . . . . . . . ? MS
inability to heel-to-toe walk . . . . . . . ? MS
So Daisy Girl you're not alone. Incidentally, congrats on your diagnosis! Don't let Mayo take it away from you!
WAF
thanks for the info.
My MRI showed lesions in the subcortical white matter, my neuro said approximately 10 white matter lesions consistant with MS and one on the corpus callosum.
I have almost constant buzzing, tingling....so not sure how much the heat affects me, other than making me very tired. I actually enjoy a hot bath.
that is the other thing.....I don't feel like I have had a remission at all since being diagnosed. I still have the same miserable symptoms I have had for years.
My MRI showed lesions in the subcortical white matter, my neuro said approximately 10 white matter lesions consistant with MS and one on the corpus callosum.
I have almost constant buzzing, tingling....so not sure how much the heat affects me, other than making me very tired. I actually enjoy a hot bath.
that is the other thing.....I don't feel like I have had a remission at all since being diagnosed. I still have the same miserable symptoms I have had for years.
I am not on a DMD.....my neuro and the MS specalist say I should be, but at this point, I have decided to give LDN (low dose naltrexone) at try.
I've had the same thing happen to me after my diagnosis. To make it worse, I thought had something completely different all along for years. It's a normal part of coming to terms with having MS. ON, no mater if it's mild or not with your symptoms, would be unlikely if you didn't have MS.
The radiologist is trained to not make a diagnosis on the causes of your white hypersensitivities because he/she doesn't have the whole picture of the exam, your blood work, your list of symptoms, etc. Your neurologist should be the only person that says if the lesions are demylenating or caused by a vascular issue. Where are your lesions located? Sometimes the location, size, number, and shape of the lesions tell a neurologist quite a bit, too.
Headaches in MS are not uncommon. See this study:
http://www.medscape.com/viewarticle/507375_3
This article also pointed out that there could be an association with migraine-like headaches and an MS.
How about heat intolerance? Do you have that?
The radiologist is trained to not make a diagnosis on the causes of your white hypersensitivities because he/she doesn't have the whole picture of the exam, your blood work, your list of symptoms, etc. Your neurologist should be the only person that says if the lesions are demylenating or caused by a vascular issue. Where are your lesions located? Sometimes the location, size, number, and shape of the lesions tell a neurologist quite a bit, too.
Headaches in MS are not uncommon. See this study:
http://www.medscape.com/viewarticle/507375_3
This article also pointed out that there could be an association with migraine-like headaches and an MS.
How about heat intolerance? Do you have that?
Well - at least your neuro and ms specialist agree on your dx of RRMS.
My first DX was RRMS - then the second opinion (MS specialist) is saying "possible MS".
I feel as you do though - acceptance would be easier if it was clear cut - then we could stop wondering and get on with life!
My first DX was RRMS - then the second opinion (MS specialist) is saying "possible MS".
I feel as you do though - acceptance would be easier if it was clear cut - then we could stop wondering and get on with life!
I was dx in Jan from a general neuro, so I went to an MS specialist in March, and he agreed with the dx.
I did have an LP....it was negative.
My MRI showed small hyperintensities that could be a demylenating disease or migraines or vasculitis.
My neuro exam was very abnormal.
My Optic Neuritis was Mild.
All other mimic were ruled out...however, I did have Low B12 (308) But my neuro said it was not low enough to cause all my symptoms and abnormal reflexes.
I guess it would be easier for me.....if my LP was positive, my MRI was classic for MS, My Optic Neurits was severe.
Other than my very abnormal neuro exam and my vast array of symptoms....it appears that everything else is in the gray zone.
I did have an LP....it was negative.
My MRI showed small hyperintensities that could be a demylenating disease or migraines or vasculitis.
My neuro exam was very abnormal.
My Optic Neuritis was Mild.
All other mimic were ruled out...however, I did have Low B12 (308) But my neuro said it was not low enough to cause all my symptoms and abnormal reflexes.
I guess it would be easier for me.....if my LP was positive, my MRI was classic for MS, My Optic Neurits was severe.
Other than my very abnormal neuro exam and my vast array of symptoms....it appears that everything else is in the gray zone.
Hi Daisy Girl
I was dx possible MS 2/10 and since that time have been questioning it - gone for 2nd opinion to make sure there isn't something else going on and awaiting testing for possible blocked artery that could be causing symptoms.
Have you had a lumber puncture? I had one, and it was neg for o bands and IgG but high in myelin basic protein - So that didn't help clinch the dx.
The problem as I see it is that there is still so much that is not know about MS - and there are so many other diseases that can mimic -
The docs I work with are very honest in admitting how much we don't know - and how in the case of MS - people who are in the gray area - well.....treat or not? Right now I am on REBIF - but unless I get some more definitive proof that this is MS - I may not stay on it. Time will tell. I'm not sure that questioning a chronic illness when you don't have definite answers is being in denial. Maybe it's just being smart.
I was dx possible MS 2/10 and since that time have been questioning it - gone for 2nd opinion to make sure there isn't something else going on and awaiting testing for possible blocked artery that could be causing symptoms.
Have you had a lumber puncture? I had one, and it was neg for o bands and IgG but high in myelin basic protein - So that didn't help clinch the dx.
The problem as I see it is that there is still so much that is not know about MS - and there are so many other diseases that can mimic -
The docs I work with are very honest in admitting how much we don't know - and how in the case of MS - people who are in the gray area - well.....treat or not? Right now I am on REBIF - but unless I get some more definitive proof that this is MS - I may not stay on it. Time will tell. I'm not sure that questioning a chronic illness when you don't have definite answers is being in denial. Maybe it's just being smart.
I constantly have questions like this, so you are not alone. As you can see, I just posted a question about cervical disc bulges. I often wondered the similarity too.
I too have had numbness tingly and pain down left arm. Blurry vision and damage to optic nerve, nystagmus,double vision. Cramp, muscle spasms in leg and back. Buzzing in left foot, twitching thumb and bottom of foot.
neuro exam shows, hyperreflexia.
I have low vit. D also
I was dx. with TIA and then taken away from neuro #2 and then dx. with simple partial seizures because of slurred speech for two weeks.
Still in limbo.
Pamela
I too have had numbness tingly and pain down left arm. Blurry vision and damage to optic nerve, nystagmus,double vision. Cramp, muscle spasms in leg and back. Buzzing in left foot, twitching thumb and bottom of foot.
neuro exam shows, hyperreflexia.
I have low vit. D also
I was dx. with TIA and then taken away from neuro #2 and then dx. with simple partial seizures because of slurred speech for two weeks.
Still in limbo.
Pamela
Hi there,
yes at times, I am still in Denial, although it has lessened very much as my symptoms continue to grow. I think I can almost say, I am not in denial any longer. I was DX 4/09.
Herniated discs in the neck, can cause an abnormal reflexes, that are very similar to MS symptoms. The lumbar herniated discs do not. It depends if it is impinging on the spinal cord, which is in the neck area.
Michelle
I wish you well
yes at times, I am still in Denial, although it has lessened very much as my symptoms continue to grow. I think I can almost say, I am not in denial any longer. I was DX 4/09.
Herniated discs in the neck, can cause an abnormal reflexes, that are very similar to MS symptoms. The lumbar herniated discs do not. It depends if it is impinging on the spinal cord, which is in the neck area.
Michelle
I wish you well
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