Aa
Is this MS?
Hi,
I am a new member. I want to know if my symptoms are consistent with MS. Can you pls help?
About my history:
6 years ago(i am 33 now)when i was 8 months pregnant, i got vertigo like room spinning for 2 days i was referred to nuero by my gyn. He did nuero exam and said it was normal and asked me to wait and watch. After 2 days its gone and never had any problem for 6 yrs.
fast forward to last year i had severe pains in my both hands and fingers in Aug. It was kind of pulling pain in fingers. I met an ortho and he suggested physical therapy. I went for the same for 3 months and i was almost pain free by oct end.
During nov 1st week i felt crawling sensations on my scalp and after a week of these crawling sensations i was in car wreck and my face was hit by air bag. Luckily i did not have any major injuries. My pain in hands returned by that month end and i again started physical therapy.
Around mid december i had the crawling sensations on face like cheeks,nose etc. I got worried and went to the doc. I had c-spine WO contrast. Brain with and WO contrast(1.5T) during last week of dec. Below are the report findings.
Brain WO contrast:
There are numerous(i think i have 13, largest being 8 mm in posterior parietal) white matter T2 hyper intensities scattered throughout the supratentorial white matter, abnormal for age. They may represent microangiopathic disease,sequelae of migrane headaches,vasculitis or demyelination. Recommend post contrast imaging.
Brain W contrast:
There are no enhacing brain lesions. The differential diagnosis is unchanged.
C-spine WO contrast:
Mild protrusion at c4-c5. mild spondylosis at c5-c6. small protrusion c6-c7. No nueral encroachment. Nothing specified with respect to lesions. The MRI taken at 0.3 T strength.
In Jan i had electric shock like sensation in my right hand alone for around a minute for first time. I was terrified and thought stroke and went to ER. ER physician told me nothing life threatening and sent me back.
I had bunch of blood work done at end of dec like thyroid,ANA, sjogrens, lyme,lupus and all negative. The only findings are:
B12 - 310 ng/ml.
vit D - 22 pg/ml.
In the mean time my symptoms were increasing. I had whole body electric sensation again for a minute. My crawling sensations spread through out body like upperback,hands,legs,face(incl upperlip, lowerlip) thighs on both sides of body. Most notable is my tingling and itching of my tongue. Itching is more at tip of the tongue. I also have feeling like falling but i wont fall. Its not room spinning. Its something moving inside my head.This is from past 2-3 weeks only. I also need to say that last 11/2 months were one of the most stressful times in my life. I never heard of MS until my MRI results.
In the mean time i was given 3 shots for b12 by my pcp and daily supplements and now my b12 is 1277. Again my symptoms have not reduced and i cannot stay with out gabapentin.
I met 2 ms specialists.
First one said he doesn't think i met the criteria. wanted me to go for LP and repeat MRI in 6 months. he told my spots are non-specific. However he did not ask history from young age. I gave my history from aug. He would want to wait for my Lp before talking about my symtpoms.
Second one said its MS and said the diagnosis is based on my history and symptoms. He did not talk about meeting the criteria at all. He said vertigo before 6 yrs was my first relapse. he reordered c-spine and new t-spine mris. he too mentioned my spots could be non-specific. But he is sure this is MS. From my history he also told that i have migranes. When i look back i think i have been having migranes from past 15 yrs not very regular though. whenever i walk for long time in Sun i get headache and vomiting.However my first one was when i was 10. I do not have any other heat sensitivity i think. he told this many spots cannot come from migranes.he did nuero exam and told i have good strength and balance. However i have altered sensations on legs and hands which he told is because of B12. she told my eyes looked normal no signs of ON. he told muscle pains in aug are ms related too. I had RLS from past 8-9 yrs again not very regular . he told RLS also could be MS.
he told he would order a 3T brain MRI in about a month. He told LP is not needed now and I'm not CIS and now i'm clinically definite MS.
My questions are
1. Will history and symptoms alone be sufficient to diagnose MS? don't we have to meet the criteria atleast clinically in the sense the nuero exam? Especially when he says lesions could be non-specific and i dont have lesions in any related areas for MS.
2. My other specialist did not rule out MS yet but he told he needs LP and repeat MRI in 6 months to say anything further.Do you think i should go for LP or no?
3. Is this a MS relapse? If yes did it start in Aug? will it stay this long? or is this 3rd relapse that started in dec? will new symtoms keep coming during a relapse? or do the same symptoms keep coming in different parts of body during a relapse? Can i have relapse with out active lesions?
4. Is crawling and numbness(i can still feel sensation) in different parts of body an evidence for dissemination in space?
5. I read relapse would be suppressed in pregnancy. So can vertigo from pregnancy still be my first relapse?
6. If my vertigo from pregnancy is my first relapse , will show O bands be shown in LP?
7. Can there be MS with lesion only in supratentorial region? and without any lesion in any of the MS specific locations?
I feel some things in line with MS and some things are not.
I'm sorry this is so long but i thot this is needed for worthwhile answer.
I am a new member. I want to know if my symptoms are consistent with MS. Can you pls help?
About my history:
6 years ago(i am 33 now)when i was 8 months pregnant, i got vertigo like room spinning for 2 days i was referred to nuero by my gyn. He did nuero exam and said it was normal and asked me to wait and watch. After 2 days its gone and never had any problem for 6 yrs.
fast forward to last year i had severe pains in my both hands and fingers in Aug. It was kind of pulling pain in fingers. I met an ortho and he suggested physical therapy. I went for the same for 3 months and i was almost pain free by oct end.
During nov 1st week i felt crawling sensations on my scalp and after a week of these crawling sensations i was in car wreck and my face was hit by air bag. Luckily i did not have any major injuries. My pain in hands returned by that month end and i again started physical therapy.
Around mid december i had the crawling sensations on face like cheeks,nose etc. I got worried and went to the doc. I had c-spine WO contrast. Brain with and WO contrast(1.5T) during last week of dec. Below are the report findings.
Brain WO contrast:
There are numerous(i think i have 13, largest being 8 mm in posterior parietal) white matter T2 hyper intensities scattered throughout the supratentorial white matter, abnormal for age. They may represent microangiopathic disease,sequelae of migrane headaches,vasculitis or demyelination. Recommend post contrast imaging.
Brain W contrast:
There are no enhacing brain lesions. The differential diagnosis is unchanged.
C-spine WO contrast:
Mild protrusion at c4-c5. mild spondylosis at c5-c6. small protrusion c6-c7. No nueral encroachment. Nothing specified with respect to lesions. The MRI taken at 0.3 T strength.
In Jan i had electric shock like sensation in my right hand alone for around a minute for first time. I was terrified and thought stroke and went to ER. ER physician told me nothing life threatening and sent me back.
I had bunch of blood work done at end of dec like thyroid,ANA, sjogrens, lyme,lupus and all negative. The only findings are:
B12 - 310 ng/ml.
vit D - 22 pg/ml.
In the mean time my symptoms were increasing. I had whole body electric sensation again for a minute. My crawling sensations spread through out body like upperback,hands,legs,face(incl upperlip, lowerlip) thighs on both sides of body. Most notable is my tingling and itching of my tongue. Itching is more at tip of the tongue. I also have feeling like falling but i wont fall. Its not room spinning. Its something moving inside my head.This is from past 2-3 weeks only. I also need to say that last 11/2 months were one of the most stressful times in my life. I never heard of MS until my MRI results.
In the mean time i was given 3 shots for b12 by my pcp and daily supplements and now my b12 is 1277. Again my symptoms have not reduced and i cannot stay with out gabapentin.
I met 2 ms specialists.
First one said he doesn't think i met the criteria. wanted me to go for LP and repeat MRI in 6 months. he told my spots are non-specific. However he did not ask history from young age. I gave my history from aug. He would want to wait for my Lp before talking about my symtpoms.
Second one said its MS and said the diagnosis is based on my history and symptoms. He did not talk about meeting the criteria at all. He said vertigo before 6 yrs was my first relapse. he reordered c-spine and new t-spine mris. he too mentioned my spots could be non-specific. But he is sure this is MS. From my history he also told that i have migranes. When i look back i think i have been having migranes from past 15 yrs not very regular though. whenever i walk for long time in Sun i get headache and vomiting.However my first one was when i was 10. I do not have any other heat sensitivity i think. he told this many spots cannot come from migranes.he did nuero exam and told i have good strength and balance. However i have altered sensations on legs and hands which he told is because of B12. she told my eyes looked normal no signs of ON. he told muscle pains in aug are ms related too. I had RLS from past 8-9 yrs again not very regular . he told RLS also could be MS.
he told he would order a 3T brain MRI in about a month. He told LP is not needed now and I'm not CIS and now i'm clinically definite MS.
My questions are
1. Will history and symptoms alone be sufficient to diagnose MS? don't we have to meet the criteria atleast clinically in the sense the nuero exam? Especially when he says lesions could be non-specific and i dont have lesions in any related areas for MS.
2. My other specialist did not rule out MS yet but he told he needs LP and repeat MRI in 6 months to say anything further.Do you think i should go for LP or no?
3. Is this a MS relapse? If yes did it start in Aug? will it stay this long? or is this 3rd relapse that started in dec? will new symtoms keep coming during a relapse? or do the same symptoms keep coming in different parts of body during a relapse? Can i have relapse with out active lesions?
4. Is crawling and numbness(i can still feel sensation) in different parts of body an evidence for dissemination in space?
5. I read relapse would be suppressed in pregnancy. So can vertigo from pregnancy still be my first relapse?
6. If my vertigo from pregnancy is my first relapse , will show O bands be shown in LP?
7. Can there be MS with lesion only in supratentorial region? and without any lesion in any of the MS specific locations?
I feel some things in line with MS and some things are not.
I'm sorry this is so long but i thot this is needed for worthwhile answer.
Sorry thagtyou're still in pain. I'm not sure whatyour current gabapentin dose is, but iot can go up to 1200mg 3X/Day. I had to max it out before seeing even minor reflief of my neuropathic foot pain. Ask your doc about increasing your dose.
Kyle
Kyle
thanks so much. my MRI results are back.
Told stable. no changes compared to prior MRI. I dont still have report in hand.
Last night burning on my face was just horrible. its like needles pricking my skin. My regular dose of gabapentin did not work. may be i need to up it.I'm puzzled with wats happening to me.
Told stable. no changes compared to prior MRI. I dont still have report in hand.
Last night burning on my face was just horrible. its like needles pricking my skin. My regular dose of gabapentin did not work. may be i need to up it.I'm puzzled with wats happening to me.
COMMUNITY LEADER
Hi there, i'll do my best to answer your questions but i think you still need to keep in mind, that its not usually a good idea to automatically assume MS must be the cause, because many sx's are not unique to MS and a particular sx may not turn out to be what it was thought..........be open minded!
1. Do you think this could be atypical trigeminal neuralgia on both sides i.e bilateral aTN?
A. I suppose it "could be" but the more common description for TN is very very intense pain. TN is said to be suicide pain (oh boy do i understand that description) and from what you've described and because "my dentist mentioned i have clenching teeth and i need night guard." there would also be the potential for what you experience to actually not be TN but possibly relating to your teeth clenching.
2. Also if TN comes before 50 the most common reason is MS is what i heard. is this correct?
A. From what i understand "bilateral TN" is classed as untypical, bilateral TN is more common in people over 65 and because bilateral TN is also dx in young people under 50 who have been diagnosed with MS, bilateral TN could be a sign of MS. I would think......if a person under 65 is dx with bilateral TN then MS needs to be looked into, because MS is a possible cause even if you are over 50 years old.
3. Also read about TMJ but i am not sure if it will cause these sensations all over my face? my dentist mentioned i have clenching teeth and i need night guard. Since he told it could be trigeminal i am assuming he would have thought of TMJ already and discarded it as possibility.
A. I honestly have my doubts that it actually is TN, what you describe and with your dentist saying you need a guard due clenching your teeth, would imhp leave the dx of TN as yet undetermined.
4. Since my new MRI is on 3T if it shows more lesions how do we identify if they are new or showing the ones not seen in 1.5T. Should i wait for another mri to find out?
A. A 3T will apparently show approx 25% more MS activity than a 1.5T but there isn't always more to be seen. It's not simple to answer this one because it really depends on a lot of various factors but basically it's difficult to compare the results from different strength MRI machines to begin with and even more difficult to determine new from old if the lesions are not active with different strength MRI's. I think speculating at this stage is probably premature, no matter what.....its probably better to hold off on the what if's, wait and see what your new MRI results are.
5. My neuro gave my anti-inflamatory andi dont think its helping. So could this be a case towards TN.
A. Not that i'm aware of, think about it.......if your sx's were from the teeth clenching then the anti-inflammatory probably wouldn't of helped either. I wouldn't assume it would point more towards TN, i think you've got to get the dx of TN before you can work out what will be more helpful to you.
Hope that helps explain TN a little bit, i do think you maybe jumping the gun a bit and need to wait until you know if you do have TN or not, though if you have received a dx of bilateral TN already, then i've definitely misunderstood that bit [sorry].
Cheers............JJ
1. Do you think this could be atypical trigeminal neuralgia on both sides i.e bilateral aTN?
A. I suppose it "could be" but the more common description for TN is very very intense pain. TN is said to be suicide pain (oh boy do i understand that description) and from what you've described and because "my dentist mentioned i have clenching teeth and i need night guard." there would also be the potential for what you experience to actually not be TN but possibly relating to your teeth clenching.
2. Also if TN comes before 50 the most common reason is MS is what i heard. is this correct?
A. From what i understand "bilateral TN" is classed as untypical, bilateral TN is more common in people over 65 and because bilateral TN is also dx in young people under 50 who have been diagnosed with MS, bilateral TN could be a sign of MS. I would think......if a person under 65 is dx with bilateral TN then MS needs to be looked into, because MS is a possible cause even if you are over 50 years old.
3. Also read about TMJ but i am not sure if it will cause these sensations all over my face? my dentist mentioned i have clenching teeth and i need night guard. Since he told it could be trigeminal i am assuming he would have thought of TMJ already and discarded it as possibility.
A. I honestly have my doubts that it actually is TN, what you describe and with your dentist saying you need a guard due clenching your teeth, would imhp leave the dx of TN as yet undetermined.
4. Since my new MRI is on 3T if it shows more lesions how do we identify if they are new or showing the ones not seen in 1.5T. Should i wait for another mri to find out?
A. A 3T will apparently show approx 25% more MS activity than a 1.5T but there isn't always more to be seen. It's not simple to answer this one because it really depends on a lot of various factors but basically it's difficult to compare the results from different strength MRI machines to begin with and even more difficult to determine new from old if the lesions are not active with different strength MRI's. I think speculating at this stage is probably premature, no matter what.....its probably better to hold off on the what if's, wait and see what your new MRI results are.
5. My neuro gave my anti-inflamatory andi dont think its helping. So could this be a case towards TN.
A. Not that i'm aware of, think about it.......if your sx's were from the teeth clenching then the anti-inflammatory probably wouldn't of helped either. I wouldn't assume it would point more towards TN, i think you've got to get the dx of TN before you can work out what will be more helpful to you.
Hope that helps explain TN a little bit, i do think you maybe jumping the gun a bit and need to wait until you know if you do have TN or not, though if you have received a dx of bilateral TN already, then i've definitely misunderstood that bit [sorry].
Cheers............JJ
first of all thanks for the group for providing answers whenever i am in need. Now i am back with some more symptoms and qtns.
After my last message to group i reduced my anxiety and started observing my symptoms like when they come, is there any pattern etc.
First thing was my dizziness felt like rocking boat/ floating on water sensation i also have occasional ear pain which i never even considered it as symptom. I met ENT and he said no problem with ears or hearing. BPPV test done and confirmed its not that. might be nuerological.
ok i continued on gabapentin for symptoms and getting on with life. One day suddenly i had jaw pain on both sides and pain increased with talking or chewing. now this is new symptom. I waited for few days and it did not subside but pain was changing in its intensity one day its more and one day its less.
i went to my dentist for regular cleaning and while discussing these symtoms casually he mentioned it might be trigeminal neuralgia and asked to check with neurologist.
i decided to stick with 1st neuro who told to comeback for an MRI in 1 year this dec. i messaged him and explained my situation , he asked me come for appointment. I did see him and he mentioned it may not be trigeminal because i have pain on both sides. But he is now not ready to wait till dec for MRI and told to do it now. I asked him if i can do a 3T and he agreed.
ok i went for MRI last week and got it done. Results pending. Now immediately after mri i started getting burning sensations on my face. i initially thought it could be because of MRI. it was little warmer than the regular one. i came back and from that day i started having more burning sensations and less tingly sensations on my face. its on both sides on cheekmlower and upper lips, sides of nose, near ears so basically all over my face. More on cheeks less on forehead. Now this seems difficult to handle. I am waiting for my results.
1. Do you think this could be atypical trigeminal neuralgia on both sides i.e bilateral aTN?
2. Also if TN comes before 50 the most common reason is MS is what i heard. is this correct?
3. Also read about TMJ but i am not sure if it will cause these sensations all over my face? my dentist mentioned i have clenching teeth and i need night guard. Since he told it could be trigeminal i am assuming he would have thought of TMJ already and discarded it as possibility.
4. Since my new MRI is on 3T if it shows more lesions how do we identify if they are new or showing the ones not seen in 1.5T. Should i wait for another mri to find out?
5. My neuro gave my anti-inflamatory andi dont think its helping. So could this be a case towards TN.
Also any ideas on how to handle this if its TN. Your help and time is much appreciated.
sorry its so long.
After my last message to group i reduced my anxiety and started observing my symptoms like when they come, is there any pattern etc.
First thing was my dizziness felt like rocking boat/ floating on water sensation i also have occasional ear pain which i never even considered it as symptom. I met ENT and he said no problem with ears or hearing. BPPV test done and confirmed its not that. might be nuerological.
ok i continued on gabapentin for symptoms and getting on with life. One day suddenly i had jaw pain on both sides and pain increased with talking or chewing. now this is new symptom. I waited for few days and it did not subside but pain was changing in its intensity one day its more and one day its less.
i went to my dentist for regular cleaning and while discussing these symtoms casually he mentioned it might be trigeminal neuralgia and asked to check with neurologist.
i decided to stick with 1st neuro who told to comeback for an MRI in 1 year this dec. i messaged him and explained my situation , he asked me come for appointment. I did see him and he mentioned it may not be trigeminal because i have pain on both sides. But he is now not ready to wait till dec for MRI and told to do it now. I asked him if i can do a 3T and he agreed.
ok i went for MRI last week and got it done. Results pending. Now immediately after mri i started getting burning sensations on my face. i initially thought it could be because of MRI. it was little warmer than the regular one. i came back and from that day i started having more burning sensations and less tingly sensations on my face. its on both sides on cheekmlower and upper lips, sides of nose, near ears so basically all over my face. More on cheeks less on forehead. Now this seems difficult to handle. I am waiting for my results.
1. Do you think this could be atypical trigeminal neuralgia on both sides i.e bilateral aTN?
2. Also if TN comes before 50 the most common reason is MS is what i heard. is this correct?
3. Also read about TMJ but i am not sure if it will cause these sensations all over my face? my dentist mentioned i have clenching teeth and i need night guard. Since he told it could be trigeminal i am assuming he would have thought of TMJ already and discarded it as possibility.
4. Since my new MRI is on 3T if it shows more lesions how do we identify if they are new or showing the ones not seen in 1.5T. Should i wait for another mri to find out?
5. My neuro gave my anti-inflamatory andi dont think its helping. So could this be a case towards TN.
Also any ideas on how to handle this if its TN. Your help and time is much appreciated.
sorry its so long.
COMMUNITY LEADER
Keep in mind.......many of the minor and most common sx's associated with MS are also found in other conditions eg vit B deficientcy, migraine, viral eg mono etc etc etc
MS is still suppose to be diagnosable by a persons clinical signs of lesions, medical history AND test evidence, so when all the evidence is added together, MS is either higher on the list of potential causation or lower on the list. When a person does have other dx-ed conditions, that could be accountable for their sx's, the test evidence becomes more important in determining cause.
Understandably the more evidence you have pointing towards MS the higher on the list MS becomes, and the reverse is true with less or atypical evidence. From what i understand your saying, your sx's, clinical signs and test evidence is not indicating or very suggestive of MS 'and or' over and above the other potential causes (mimics) that you have already been dx with.
So with that thought in my mind, i would actually suggest you consider a fresh set of eyes, and seek a completely new opinion on what is causing this or at least considering staying with the neurologist who is being cautious and waiting for more clinical and test evidence before dx-ing you!
Food for thought..........JJ
MS is still suppose to be diagnosable by a persons clinical signs of lesions, medical history AND test evidence, so when all the evidence is added together, MS is either higher on the list of potential causation or lower on the list. When a person does have other dx-ed conditions, that could be accountable for their sx's, the test evidence becomes more important in determining cause.
Understandably the more evidence you have pointing towards MS the higher on the list MS becomes, and the reverse is true with less or atypical evidence. From what i understand your saying, your sx's, clinical signs and test evidence is not indicating or very suggestive of MS 'and or' over and above the other potential causes (mimics) that you have already been dx with.
So with that thought in my mind, i would actually suggest you consider a fresh set of eyes, and seek a completely new opinion on what is causing this or at least considering staying with the neurologist who is being cautious and waiting for more clinical and test evidence before dx-ing you!
Food for thought..........JJ
Hi - I can see that this uncertainty is causing you to be very anxious. This anxiety is not going to help you in finding out what's causing your symptoms. It may even be contributing to them.
If you continue to move back and forth between neuros, that you know have different opinions, you are only going to add to your anxiety. In my opinion you should pick one. I would go to Neuro # 2 and give him all of the new information you have, such as the LP results. He is likely to tell you that LP's aren't conclusive. For those of us who have been diagnosed and have positive LP results, the LP's were most likely a third level criteria. We had poor clinical exams, lesions in brain, c and or t-spine and then the LP.
Try and relax a bit :-)
Kyle
If you continue to move back and forth between neuros, that you know have different opinions, you are only going to add to your anxiety. In my opinion you should pick one. I would go to Neuro # 2 and give him all of the new information you have, such as the LP results. He is likely to tell you that LP's aren't conclusive. For those of us who have been diagnosed and have positive LP results, the LP's were most likely a third level criteria. We had poor clinical exams, lesions in brain, c and or t-spine and then the LP.
Try and relax a bit :-)
Kyle
Thanks all for your responses. Few more questions:
1. In general if some has MS, how long it will take to show up activity in CSF, o-bands and elevated protien levels? This is for 90-95% who have positive spinal tap test? Not for 5-10% who never show a positive spinal tap.
2. Initially my B-12 (310), Vit-D (22) are low. Now with B-12 injections my levels are upto 1000. Also on strong Vit-D. If my symtoms are because of vitamin deficiencies, approx. how long it will take after the levels come to normal?
2. My 1st neuro (also MS doctor) is confident this is not MS - His criteria is - lesions in non MS locations in brain (both neuro's confirmed that I had a history of migranes), normal neuro exam, negative spinal tap, clear c/t spine mri's) and asks me to wait for another year for 2nd MRI or for any other changes.
3. I am continuing to have symtoms I mentioned above (crawling, tingling on scalp, face, tounge, legs and feeling like falling, pain in hands)
4. As mentioned, my 2nd Neuro in one of the large MS Center - said this is MS. I am hesitant to go there again as he said it is MS just from my symptoms and history and not even before looking at my brain MRI film or doing a neuro exam. But I am wondering whether a neuro in one of the largest can go wrong. At that time I do not have spinal tap results or my C/T spine results.
Some where I feel like I should go to 2nd neuro (MS Center) also and see what he thinks now with new tests - C/T spine and Spinal tap. But not feel like going back.
Sorry I am putting my thoughts here as I am confused. Not to mention I severly get tensed when ever I continue to have symtoms.
Do you think I should go back to 2nd MS center neuro or wait for another 1 year for MRI? With this thoughts in my mind and increased tension I am not able to come back to normal. Thank you all for your feedback.
1. In general if some has MS, how long it will take to show up activity in CSF, o-bands and elevated protien levels? This is for 90-95% who have positive spinal tap test? Not for 5-10% who never show a positive spinal tap.
2. Initially my B-12 (310), Vit-D (22) are low. Now with B-12 injections my levels are upto 1000. Also on strong Vit-D. If my symtoms are because of vitamin deficiencies, approx. how long it will take after the levels come to normal?
2. My 1st neuro (also MS doctor) is confident this is not MS - His criteria is - lesions in non MS locations in brain (both neuro's confirmed that I had a history of migranes), normal neuro exam, negative spinal tap, clear c/t spine mri's) and asks me to wait for another year for 2nd MRI or for any other changes.
3. I am continuing to have symtoms I mentioned above (crawling, tingling on scalp, face, tounge, legs and feeling like falling, pain in hands)
4. As mentioned, my 2nd Neuro in one of the large MS Center - said this is MS. I am hesitant to go there again as he said it is MS just from my symptoms and history and not even before looking at my brain MRI film or doing a neuro exam. But I am wondering whether a neuro in one of the largest can go wrong. At that time I do not have spinal tap results or my C/T spine results.
Some where I feel like I should go to 2nd neuro (MS Center) also and see what he thinks now with new tests - C/T spine and Spinal tap. But not feel like going back.
Sorry I am putting my thoughts here as I am confused. Not to mention I severly get tensed when ever I continue to have symtoms.
Do you think I should go back to 2nd MS center neuro or wait for another 1 year for MRI? With this thoughts in my mind and increased tension I am not able to come back to normal. Thank you all for your feedback.
Gabapentin has a lot of CNS related side effects. I refused the meeds because of them. I already have bad vertigo, and the gabapentin does cause dizziness.
I am not an expert and looking for many answers myself, but in my research I found that may benefit you.. A few things I would have them check further is your c spine herniation you mentioned, as that can cause BPPV (benign paroxysmal positional vertigo).
Crawling sensation is a symptoms on chronic Lyme disease, but also can be symptomatic of a nervous system disorder, not JUST a CNS disorder. I can tell you heighten anxiety sometimes causes my skin to do weird things.
I am not an expert and looking for many answers myself, but in my research I found that may benefit you.. A few things I would have them check further is your c spine herniation you mentioned, as that can cause BPPV (benign paroxysmal positional vertigo).
Crawling sensation is a symptoms on chronic Lyme disease, but also can be symptomatic of a nervous system disorder, not JUST a CNS disorder. I can tell you heighten anxiety sometimes causes my skin to do weird things.
My symptoms seem to continue. Major ones are crawling sensations on scalp and face ,tongue tingling and itching and feeling like I would fall. It's like something is moving inside my head. I dint have this in December. It started around jan 20 I guess. I started gabapentin from jan 3. Do you think this could be a side effect of gabapentin or a new symptom.?
Also I feel some discomfort in eyes when viewing fast moving stuff on TV . My nuero however checked eyes and told no signs of ON.
I am stuck with what else to do and which doctor to see for my symptoms?
Any ideas?
Also I feel some discomfort in eyes when viewing fast moving stuff on TV . My nuero however checked eyes and told no signs of ON.
I am stuck with what else to do and which doctor to see for my symptoms?
Any ideas?
Update. Results of t spine and c spine W and WO contrast are back and all clear. Some disk issues in cspine not major ones though.
I met my 1st nuero for lp follow up visit. He asked me to not worry much about ms. He told he would do another brain MRI this dec I.e after 1 yr of last MRI and see how it is. He mentioned that 1 yr is good time rather than 6 months. Reg symptoms he doesn't think they are caused from ms. He only asked me to continue vitamins,exercise and see how it goes.
Carrie235, I asked him regd Lyme he said the chances are less. But he can go ahead if I want to. The place I reside has very low presence of Lyme it seems. I thot I would ask my pcp and get it done from her if I need to.
I met my 1st nuero for lp follow up visit. He asked me to not worry much about ms. He told he would do another brain MRI this dec I.e after 1 yr of last MRI and see how it is. He mentioned that 1 yr is good time rather than 6 months. Reg symptoms he doesn't think they are caused from ms. He only asked me to continue vitamins,exercise and see how it goes.
Carrie235, I asked him regd Lyme he said the chances are less. But he can go ahead if I want to. The place I reside has very low presence of Lyme it seems. I thot I would ask my pcp and get it done from her if I need to.
to 2014User:
Hello, I saw your post the other day when I was looking in the forum and wanted to reply because I wanted you to know that you are not alone in this. I have MANY of the same symptoms that you have WITH similar brain MRI results (21+ lesions scattered thoughout my brain).
Anyhow, I had a complete workup at UCSF MS department and they concluded that I DO NOT have MS. My neuro exam was and still is completely normal. I do get yearly MRI's (and will for a total of 5 years) before they make a 100% confident decision that this is not MS. I too was sooo scared when all my symptoms first started and was sure that it was MS and not being diagnosed.
I still have many symptoms that seem to come and go on a daily basis but many are just like you describe. There are too many to list but if you want me to go into more detail, let me know and I'll be happy describe in detail.
Somehow though someone at some point suggested lyme disease. I didn't believe it at first (and still struggle with the diagnosis to be honest) but I did see a lyme literate doctor and was tested through a specialty lab (Igenex). I tested very positive for lyme disease and started treatment a few years ago. What I noticed that was within 2 weeks of starting ABX treatment, the numbness in my face and leg went away. This is what makes me believe that what I really am dealing with is lyme. Also, when the first neuro I saw at UCSF was looking at my MRI scan, I'm not kidding you, the first thing he said to me was "have you had lyme disease?"
Anyhow, it might be worth checking in to if you haven't already. There is a lyme forum on Medhelp if you want to check it out.
I totally agree with the wait and watch approach too. I don't like that someone would DX you with MS without all the other backup tests. I had a spinal tap and it did not have any abnormalities.
Good luck to you!
Hello, I saw your post the other day when I was looking in the forum and wanted to reply because I wanted you to know that you are not alone in this. I have MANY of the same symptoms that you have WITH similar brain MRI results (21+ lesions scattered thoughout my brain).
Anyhow, I had a complete workup at UCSF MS department and they concluded that I DO NOT have MS. My neuro exam was and still is completely normal. I do get yearly MRI's (and will for a total of 5 years) before they make a 100% confident decision that this is not MS. I too was sooo scared when all my symptoms first started and was sure that it was MS and not being diagnosed.
I still have many symptoms that seem to come and go on a daily basis but many are just like you describe. There are too many to list but if you want me to go into more detail, let me know and I'll be happy describe in detail.
Somehow though someone at some point suggested lyme disease. I didn't believe it at first (and still struggle with the diagnosis to be honest) but I did see a lyme literate doctor and was tested through a specialty lab (Igenex). I tested very positive for lyme disease and started treatment a few years ago. What I noticed that was within 2 weeks of starting ABX treatment, the numbness in my face and leg went away. This is what makes me believe that what I really am dealing with is lyme. Also, when the first neuro I saw at UCSF was looking at my MRI scan, I'm not kidding you, the first thing he said to me was "have you had lyme disease?"
Anyhow, it might be worth checking in to if you haven't already. There is a lyme forum on Medhelp if you want to check it out.
I totally agree with the wait and watch approach too. I don't like that someone would DX you with MS without all the other backup tests. I had a spinal tap and it did not have any abnormalities.
Good luck to you!
I'm one of those people with no o-bands but still have MS. A negative o-bands test doesn't rule out MS. Sorry that you still have to search for the answers to what is going on with your body.
Dennis
Dennis
Hi - It sounds to me like you have a little more data, but are not any closer to getting answers. The negative o-band result doesn't rule MS out all by itself. This is another reason I would stick with the doc who wants to investigate further.
Kyle
Kyle
I am back with an update.
I had my lumbar puncture done. Negative.0 bands.
Same symptoms continue. What do you think?
I had my lumbar puncture done. Negative.0 bands.
Same symptoms continue. What do you think?
Thanks every one for your detailed inputs. I was trying to have little hope, though I am losing confidence every day based on this:
1. My neuro exam was good with both MS specialists. Except the heat sensation in my leg, lower on my feet -doctor said, it could be because of B-12 deficiency.
2. Major symptoms that I have so far are - numbness, crawling sensation all over my body - face, tounge, legs, hands.
3. 13 small lesions in supratentorial region - none in 4 MS locations, none touching perventricles, one is close and about 8 mm which is the largest and rest all are small and scattered across.
4. One MS specialist says these are non-specific and need more tests one MS specialist says these are non specicic too - but are related to MS no further tests needed.
I was hoping that these symtoms are because of low B-12, Vit D and lesions are because of my migraines? But losing confidence after meeting with 2nd doctor.
Once again thank you all for your time, this is a wonderful forum to know a lot.
1. My neuro exam was good with both MS specialists. Except the heat sensation in my leg, lower on my feet -doctor said, it could be because of B-12 deficiency.
2. Major symptoms that I have so far are - numbness, crawling sensation all over my body - face, tounge, legs, hands.
3. 13 small lesions in supratentorial region - none in 4 MS locations, none touching perventricles, one is close and about 8 mm which is the largest and rest all are small and scattered across.
4. One MS specialist says these are non-specific and need more tests one MS specialist says these are non specicic too - but are related to MS no further tests needed.
I was hoping that these symtoms are because of low B-12, Vit D and lesions are because of my migraines? But losing confidence after meeting with 2nd doctor.
Once again thank you all for your time, this is a wonderful forum to know a lot.
Hi there. You've gotten really thorough information and explanations from those who have already answered. Your questions are extremely good too, very focused and showing an understanding of the diagnostic process. I won't repeat what's already been said, but will add a couple of thoughts here.
Of course I'm not medically qualified in any way, and am just a patient, so please bear that in mind. But personally I'm leaning towards MS as the explanation of your symptoms, for the pragmatic reason that other causes seem to have been eliminated.
In your shoes though, I still would lean towards watchful waiting, not long-term. I probably would go ahead with the LP, on the grounds that it might just provide more concrete evidence. If it doesn't, you haven't lost anything. True, it's an invasive procedure, but done right it isn't that complicated, and 6 out of 7 pretty much breeze through it (including me).
MS isn't a disease where time is of the essence, so over the short haul waiting a bit to see if something really definite occurs is not a bad plan. And if I still had doubts about the neurologist at that point, I'd seek out yet another opinion. I probably would go ahead and find another doctor anyway on general principles, since actually seeing one takes quite a lot of time. Meanwhile I'd assemble a file of all test results and the actual MRIs, which eliminates the need for repetitions, and I'd advise you to do this. Keep all these for yourself, and submit photocopies elsewhere when needed. And of course appointments can always be canceled, should you go that route.
Yes, the neuro exam and a clinical exam are the same thing. If a doctor is not thorough in this regard, that would remove him or her from my list, since the exam remains a crucial step in the process. 'Thorough' means that the testing takes a good 30 minutes, sometimes more. Doctors skilled at this, having done it thousands of times, can detect even slight deviations from normal that I as a patient have no idea about.
It's one thing if all evaluations including MRI come out classic for MS, and some, a relatively small number of members here, have this outcome. But what happens more frequently is that there are gray areas and not a slam dunk. This is often complicated by factors such as a basically incompetent doctor, or one whose people skills are woefully lacking. Those who are mired in these situations are much more likely to seek out a forum and ask the tough questions, I have found. It's not at all unusual to go through 6 or 8 neuros and several years before clarity is reached. Very frustrating, but that is the nature of MS.
Finally, I would agree in general that wide-spread symptoms tend not to be MS, considering how the disease works. Yet last year I myself had a bad relapse that involved a lot of territory. I really did not home in on MS as the cause, given this ambiguous situation, and I sought out other doctors, including my primary and my allergist, who could provide no answers as nothing obvious to them was wrong.
Ultimately the symptoms involved the inside of my mouth, including tongue and gums on the left side. I had had this kind of thing quite a few years before, and there really isn't a lot else that could cause it. One-sidedness is a big factor in narrowing things down, as nerves arise in the brain and from the spinal cord in both directions. It is unusual in MS for both areas to be affected. When they are, the waters get muddied even more. But for me, even as a pretty knowledgeable patient, it took weeks for the cause to be clear. Fortunately, after IV steroid treatment and high doses of Neurontin, the situation rectified itself.
Wow, I thought I'd write just a brief answer here, yet it's come out to be endless, and for that I apologize. I hope that we've provided some help to you. We do have a great many years of collective experience and some grounding that often gives a good perspective.
ess
Of course I'm not medically qualified in any way, and am just a patient, so please bear that in mind. But personally I'm leaning towards MS as the explanation of your symptoms, for the pragmatic reason that other causes seem to have been eliminated.
In your shoes though, I still would lean towards watchful waiting, not long-term. I probably would go ahead with the LP, on the grounds that it might just provide more concrete evidence. If it doesn't, you haven't lost anything. True, it's an invasive procedure, but done right it isn't that complicated, and 6 out of 7 pretty much breeze through it (including me).
MS isn't a disease where time is of the essence, so over the short haul waiting a bit to see if something really definite occurs is not a bad plan. And if I still had doubts about the neurologist at that point, I'd seek out yet another opinion. I probably would go ahead and find another doctor anyway on general principles, since actually seeing one takes quite a lot of time. Meanwhile I'd assemble a file of all test results and the actual MRIs, which eliminates the need for repetitions, and I'd advise you to do this. Keep all these for yourself, and submit photocopies elsewhere when needed. And of course appointments can always be canceled, should you go that route.
Yes, the neuro exam and a clinical exam are the same thing. If a doctor is not thorough in this regard, that would remove him or her from my list, since the exam remains a crucial step in the process. 'Thorough' means that the testing takes a good 30 minutes, sometimes more. Doctors skilled at this, having done it thousands of times, can detect even slight deviations from normal that I as a patient have no idea about.
It's one thing if all evaluations including MRI come out classic for MS, and some, a relatively small number of members here, have this outcome. But what happens more frequently is that there are gray areas and not a slam dunk. This is often complicated by factors such as a basically incompetent doctor, or one whose people skills are woefully lacking. Those who are mired in these situations are much more likely to seek out a forum and ask the tough questions, I have found. It's not at all unusual to go through 6 or 8 neuros and several years before clarity is reached. Very frustrating, but that is the nature of MS.
Finally, I would agree in general that wide-spread symptoms tend not to be MS, considering how the disease works. Yet last year I myself had a bad relapse that involved a lot of territory. I really did not home in on MS as the cause, given this ambiguous situation, and I sought out other doctors, including my primary and my allergist, who could provide no answers as nothing obvious to them was wrong.
Ultimately the symptoms involved the inside of my mouth, including tongue and gums on the left side. I had had this kind of thing quite a few years before, and there really isn't a lot else that could cause it. One-sidedness is a big factor in narrowing things down, as nerves arise in the brain and from the spinal cord in both directions. It is unusual in MS for both areas to be affected. When they are, the waters get muddied even more. But for me, even as a pretty knowledgeable patient, it took weeks for the cause to be clear. Fortunately, after IV steroid treatment and high doses of Neurontin, the situation rectified itself.
Wow, I thought I'd write just a brief answer here, yet it's come out to be endless, and for that I apologize. I hope that we've provided some help to you. We do have a great many years of collective experience and some grounding that often gives a good perspective.
ess
COMMUNITY LEADER
Hi and welcome to our little MS community, I'll do my best to answer your Q's but to be honest, i'm inclined to agree with immisceo regarding your first neuro's approach being preferable under the circumstances. From my understanding of MS, the sx's you've mentioned, sx pattern and diagnostic history do not particularly indicate MS to be the most likely cause, over and above the other alternatives or mimics.
Typically sx's that spread through out the body, and or multiply rapidly, and or bilaterally upper and lower motor tracks are classed as 'red flags' leading away from the cause being MS. If the person does also have a dx history of an alternate dx (migraine, low vit B, spondylosis) that could also explain their test results and or symptoms, then it is best to be cautious and wait for MS specific sx's and or less ambiguous diagnostic test results.
*My questions are
1. Will history and symptoms alone be sufficient to diagnose MS? don't we have to meet the criteria atleast clinically in the sense the nuero exam? Especially when he says lesions could be non-specific and i dont have lesions in any related areas for MS.
A. I wouldn't of thought your history and sx's actually could be sufficient to dx MS. MS is still suppose to be a clinical dx and the test evidence is important to back up MS as the 'most likely' cause. When the sx's are suspicious but not specific enough for MS eg ON, Nystagmus, unilateral sensory - numb, pin's needles, hot/cold patch, unilateral motor sx' clonus, hyperreflex, foot drop etc and there are no clinical evidence of brain and or spinal lesions in the patient, the Mcdonald diagnostic criteria becomes even more weighted evidence.
Having non-specific sx's, no clinical signs of lesions and not meeting the MS diagnosic criteria, untypical presentation and having alternate dx's, would usually put MS lower on the list of potential causes, very usual to be dx-ed without further evidence more specific to MS.
2. My other specialist did not rule out MS yet but he told he needs LP and repeat MRI in 6 months to say anything further.Do you think i should go for LP or no?
A. The LP is another diagnostic test that can 'help' add or reduce the likelyhood of MS causation. 2+ obands unique to the serum would lean towards MS and the more obands the stronger the evidence of MS, when added to all the other suggestive evidence, it would be enough additional weight to call MS as the dx. Unfortunately, not having any obands doesn't actually rule out MS because it's not a definitive test 'but' if all your test evidence isn't putting MS higher on your potential list of causes, it could mean the likelyhood of MS is even lower on your list, when added together.
3. Is this a MS relapse? If yes did it start in Aug? will it stay this long? or is this 3rd relapse that started in dec? will new symtoms keep coming during a relapse? or do the same symptoms keep coming in different parts of body during a relapse? Can i have relapse with out active lesions?
A. Maybe, relapses can last days, weeks, months or years and it's impossible to guess from what you've said so far. Its impossible for a person to have 3 'MS' relapses in such a short time frame. Relapse rule of thumb: old sx's returning, existing sx's worsening and or a new sx lasting for longer than 24/48 hours and with at least a 30day period since your last relapse. The same sx's 'do not' keep coming in different parts of the body, as you described previously, if the cause was MS.
Technically No you can't be relapsing with out active lesions BUT there is a huge gray area if your referring to catching the activity on an MRI. There is only a small window of time to catch active lesions on an MRI, its approx 30-45 days so it's entirely possible to have MS and not catch the new lesion(s) lighting up.
4. Is crawling and numbness(i can still feel sensation) in different parts of body an evidence for dissemination in space?
A. NO, again from what you described previously re red flags. The DIS is not actually sx based but relating to the MRI evidence criteria, so having lesions in different MS areas on your MRI would meet the criteria for DIS. Lesion damage usually causes MS sx's to develop and present in the same place (spot/splodge/area) and then completely remit or improve, and returning in the same place and or a new place with another relapse. From what you've described, i would think it would be unusual for MS to be able to create that sx pattern.
5. I read relapse would be suppressed in pregnancy. So can vertigo from pregnancy still be my first relapse?
A. Yes pregnancy does commonly suppress MS activity, its very common for women to experience a relapse, even their first MS event in the weeks directly after giving birth and quite uncommon during gestation. Only having vertigo for a couple of days, does not of it's self scream MS because vertigo can be caused by many things and isn't at all uncommon in pregnancy. Another uncommon thing, that makes me further doubt MS as the cause of the vertigo, is that you didn't experience anything MS 'related' until 6 years later, so it is highly possible that it was due to your pregnancy and not an uncommon presentation of MS.
6. If my vertigo from pregnancy is my first relapse , will show O bands be shown in LP?
A. With the 'potential' for the brief episode of vertigo during your pregnancy to be unrelated to MS, i think there is not enough to suggest that was your first MS event but even if it was, you have a misunderstanding on this, because there is no connection to the number of relapses and the number of obands a person with MS will have. People with PPMS do not have relapses and they typically have the higher number of obands, so the number of relapses doesn't really have anything to do with the number of obands .
7. Can there be MS with lesion only in supratentorial region? and without any lesion in any of the MS specific locations?
A. If you only have non-specific lesions in the 1 area, supratentorial then that wouldn't meet DIS or DIT, so technically the answer would have to be No because it wouldn't meet the clinically defined criteria BUT just to complicate the complicated even further, there isn't any way to say a person suspected of having MS but not having enough hard evidence to dx, will not develop demylinating lesions in other areas of their brain or spinal cord, at some later date.
Hopefully that does make sense!
Personally, i would be more trusting of a neuro who is wanting to wait for more specific MS evidence, than a neuro who is willing to dx based on ambiguous evidence and sx's, especially with your medical history of migraine and structural spinal issues, for me the doubt is definitely there and it would seem more prudent to be cautious in the dx, until you have more specific MS evidence.
Cheers............JJ
Typically sx's that spread through out the body, and or multiply rapidly, and or bilaterally upper and lower motor tracks are classed as 'red flags' leading away from the cause being MS. If the person does also have a dx history of an alternate dx (migraine, low vit B, spondylosis) that could also explain their test results and or symptoms, then it is best to be cautious and wait for MS specific sx's and or less ambiguous diagnostic test results.
*My questions are
1. Will history and symptoms alone be sufficient to diagnose MS? don't we have to meet the criteria atleast clinically in the sense the nuero exam? Especially when he says lesions could be non-specific and i dont have lesions in any related areas for MS.
A. I wouldn't of thought your history and sx's actually could be sufficient to dx MS. MS is still suppose to be a clinical dx and the test evidence is important to back up MS as the 'most likely' cause. When the sx's are suspicious but not specific enough for MS eg ON, Nystagmus, unilateral sensory - numb, pin's needles, hot/cold patch, unilateral motor sx' clonus, hyperreflex, foot drop etc and there are no clinical evidence of brain and or spinal lesions in the patient, the Mcdonald diagnostic criteria becomes even more weighted evidence.
Having non-specific sx's, no clinical signs of lesions and not meeting the MS diagnosic criteria, untypical presentation and having alternate dx's, would usually put MS lower on the list of potential causes, very usual to be dx-ed without further evidence more specific to MS.
2. My other specialist did not rule out MS yet but he told he needs LP and repeat MRI in 6 months to say anything further.Do you think i should go for LP or no?
A. The LP is another diagnostic test that can 'help' add or reduce the likelyhood of MS causation. 2+ obands unique to the serum would lean towards MS and the more obands the stronger the evidence of MS, when added to all the other suggestive evidence, it would be enough additional weight to call MS as the dx. Unfortunately, not having any obands doesn't actually rule out MS because it's not a definitive test 'but' if all your test evidence isn't putting MS higher on your potential list of causes, it could mean the likelyhood of MS is even lower on your list, when added together.
3. Is this a MS relapse? If yes did it start in Aug? will it stay this long? or is this 3rd relapse that started in dec? will new symtoms keep coming during a relapse? or do the same symptoms keep coming in different parts of body during a relapse? Can i have relapse with out active lesions?
A. Maybe, relapses can last days, weeks, months or years and it's impossible to guess from what you've said so far. Its impossible for a person to have 3 'MS' relapses in such a short time frame. Relapse rule of thumb: old sx's returning, existing sx's worsening and or a new sx lasting for longer than 24/48 hours and with at least a 30day period since your last relapse. The same sx's 'do not' keep coming in different parts of the body, as you described previously, if the cause was MS.
Technically No you can't be relapsing with out active lesions BUT there is a huge gray area if your referring to catching the activity on an MRI. There is only a small window of time to catch active lesions on an MRI, its approx 30-45 days so it's entirely possible to have MS and not catch the new lesion(s) lighting up.
4. Is crawling and numbness(i can still feel sensation) in different parts of body an evidence for dissemination in space?
A. NO, again from what you described previously re red flags. The DIS is not actually sx based but relating to the MRI evidence criteria, so having lesions in different MS areas on your MRI would meet the criteria for DIS. Lesion damage usually causes MS sx's to develop and present in the same place (spot/splodge/area) and then completely remit or improve, and returning in the same place and or a new place with another relapse. From what you've described, i would think it would be unusual for MS to be able to create that sx pattern.
5. I read relapse would be suppressed in pregnancy. So can vertigo from pregnancy still be my first relapse?
A. Yes pregnancy does commonly suppress MS activity, its very common for women to experience a relapse, even their first MS event in the weeks directly after giving birth and quite uncommon during gestation. Only having vertigo for a couple of days, does not of it's self scream MS because vertigo can be caused by many things and isn't at all uncommon in pregnancy. Another uncommon thing, that makes me further doubt MS as the cause of the vertigo, is that you didn't experience anything MS 'related' until 6 years later, so it is highly possible that it was due to your pregnancy and not an uncommon presentation of MS.
6. If my vertigo from pregnancy is my first relapse , will show O bands be shown in LP?
A. With the 'potential' for the brief episode of vertigo during your pregnancy to be unrelated to MS, i think there is not enough to suggest that was your first MS event but even if it was, you have a misunderstanding on this, because there is no connection to the number of relapses and the number of obands a person with MS will have. People with PPMS do not have relapses and they typically have the higher number of obands, so the number of relapses doesn't really have anything to do with the number of obands .
7. Can there be MS with lesion only in supratentorial region? and without any lesion in any of the MS specific locations?
A. If you only have non-specific lesions in the 1 area, supratentorial then that wouldn't meet DIS or DIT, so technically the answer would have to be No because it wouldn't meet the clinically defined criteria BUT just to complicate the complicated even further, there isn't any way to say a person suspected of having MS but not having enough hard evidence to dx, will not develop demylinating lesions in other areas of their brain or spinal cord, at some later date.
Hopefully that does make sense!
Personally, i would be more trusting of a neuro who is wanting to wait for more specific MS evidence, than a neuro who is willing to dx based on ambiguous evidence and sx's, especially with your medical history of migraine and structural spinal issues, for me the doubt is definitely there and it would seem more prudent to be cautious in the dx, until you have more specific MS evidence.
Cheers............JJ
Thank you all for your responses.
Please help me understand - what is a clinical exam?
I thought it is neuro exam - for me both of them said there is no problem with my neuro exam. So, is clinical exam different from neuro exam? Both of them didn't mention about EMG's or VEP etc. Are they necessary?
Regarding relapse - 24 hours or more means does that need to be continous and all the time? For exampe, if the numbness/crawling is there for 2 hours in morning, few more hours in evening for few days, is it a relapse?
This is all new to me, feeling like my life is upside down.
Please help me understand - what is a clinical exam?
I thought it is neuro exam - for me both of them said there is no problem with my neuro exam. So, is clinical exam different from neuro exam? Both of them didn't mention about EMG's or VEP etc. Are they necessary?
Regarding relapse - 24 hours or more means does that need to be continous and all the time? For exampe, if the numbness/crawling is there for 2 hours in morning, few more hours in evening for few days, is it a relapse?
This is all new to me, feeling like my life is upside down.
Hi and welcome to the forum! You found a our little piece of the internet where you can ask questions (without judgment as we are all learning) and hear others experiences and learn from our Health Pages.
My diagnosis of MS was made on the basis of history and symptoms since my MRIs did not show clinically definite lesions at the time. They do now.
After seeing 6 or 7 neuros, I can't remember now, I was sent by my general neuro to the newest neuro in town at an academic teaching hospital. He was older and had learn to diagnose MS without the use of MRIs.
After running tests for every possible MS mimic and there are many, he said the only thing left on the table was MS. 4 years later, after treatment had been started after my diagnosis, I developed classic MS lesions in the areas.
The LP done by another neuro was negative for O-bands.And *** for my MRIs they blamed my small punctate lesions on migraines, my hypertension or age. Actually new onset migraines at age 48 was my first symptom of MS according to my doctor since the migraines involved tingling in my left arm. In retrospect, I have had symptoms since I was 16 that only manifested as tingling in my left arm, usually after clapping at high school football games and falling to my left side whenever I fell. So that's my story.
As for an LP, there can be false negatives and it is not a make it or break it deal maker in diagnosing MS. ONLY if it's positive does it help the diagnosis.
As for a relapse during pregnancy. According to my.cleavelandclinic.org, pregnancy only reduces MS relapses my 70%.
The duration of a relapse is consider a new or old symptoms that lasts for a minimum of 24 hours.
I have experienced the crawling sensations as part of my symptoms. It is one of the parathesias or abnormal sensation produced by a damaged nerve.
Yes, you can have MS without active lesions. We have Health Pages located at the very bottom of this page, on the right hand side. Many were written by Quix , who is a retired pediatrician with MS, others were written by some of other very talented and intelligent forum members.
One in particular is the one dealing with MS and no lesions. Below is the direct link:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
There are many other pages that are full of information regarding relapses, signs and symptoms, what to look for in a good neuro,abbreviations and terms used in MS, MS mimics and beginning treatment. Some of these pages need updating due to new information available but the basic questions you have can be answered in these very informative pages.
I hope I have helped answer some of your questions. Please feel free to follow-up with any other questions you may have. BTW, the weekend is usually a slow time here on the forum so others may chime in later on.
Wishing you the best,
Ren
My diagnosis of MS was made on the basis of history and symptoms since my MRIs did not show clinically definite lesions at the time. They do now.
After seeing 6 or 7 neuros, I can't remember now, I was sent by my general neuro to the newest neuro in town at an academic teaching hospital. He was older and had learn to diagnose MS without the use of MRIs.
After running tests for every possible MS mimic and there are many, he said the only thing left on the table was MS. 4 years later, after treatment had been started after my diagnosis, I developed classic MS lesions in the areas.
The LP done by another neuro was negative for O-bands.And *** for my MRIs they blamed my small punctate lesions on migraines, my hypertension or age. Actually new onset migraines at age 48 was my first symptom of MS according to my doctor since the migraines involved tingling in my left arm. In retrospect, I have had symptoms since I was 16 that only manifested as tingling in my left arm, usually after clapping at high school football games and falling to my left side whenever I fell. So that's my story.
As for an LP, there can be false negatives and it is not a make it or break it deal maker in diagnosing MS. ONLY if it's positive does it help the diagnosis.
As for a relapse during pregnancy. According to my.cleavelandclinic.org, pregnancy only reduces MS relapses my 70%.
The duration of a relapse is consider a new or old symptoms that lasts for a minimum of 24 hours.
I have experienced the crawling sensations as part of my symptoms. It is one of the parathesias or abnormal sensation produced by a damaged nerve.
Yes, you can have MS without active lesions. We have Health Pages located at the very bottom of this page, on the right hand side. Many were written by Quix , who is a retired pediatrician with MS, others were written by some of other very talented and intelligent forum members.
One in particular is the one dealing with MS and no lesions. Below is the direct link:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
There are many other pages that are full of information regarding relapses, signs and symptoms, what to look for in a good neuro,abbreviations and terms used in MS, MS mimics and beginning treatment. Some of these pages need updating due to new information available but the basic questions you have can be answered in these very informative pages.
I hope I have helped answer some of your questions. Please feel free to follow-up with any other questions you may have. BTW, the weekend is usually a slow time here on the forum so others may chime in later on.
Wishing you the best,
Ren
Hi and welcome to the forum. I'll try to answer your questions, but I'm not a medical person, just a MS patient.
1) I have heard of others with clinical diagnoses of MS based on symptoms, history, and a Neuro Exam. Some pwMS (People w/ MS) have no lesions that are found w/ a MRI, or atypical lesions. It can also depend on how the MRI was done or what strength the machine was as to if any lesions are found. An MRI needs to be done with the MS protocol to have the best chance for lesions to be found. Also if it is done on an open MRI their is less chance for them to be found.
You also stated that the c-spine MRI was done on a 0.3 T machine. I have never heard of that power for a MRI so hopefully that was a typo. IN order to find lesions in the spine they need to be done on 2.0 or greater machine as they are very hard to see with an MRI.
Personally my brain lesions are of the atypical type and only 3 of them. But I have had MS for over 25 years now. But my MRI report also included that key word of what it could be (demyelination). I suspect that being in the report and your history and symptoms is what the second Neuro is basing his diagnoses on.
2) As immisceo stated an LP is not definitive for the diagnoses of MS one way or the other. Some pwMS have the o-bands and some, like myself, don't. A lot of Neuros from what I have heard are not doing the LP any more due to this fact and that some people have a lot of nasty side effect for the LP (severe headache). Personally I have had an LP done twice without the dreaded headache or any other problems.
3). Relapses are a trickier question to answer as they seem to range all over the place fro one person to the next. It seems that each pwMS has to learn when and what is their relapses like, especially with the number of forms of MS people have (RRMS,SPMS,PPMS,...). Another thing that effects the answer is how long, if at all, the damage can be repaired by your body. Both of my feet have been number for around 15 years now due to the damage done by MS.
When it comes to the MRI lesions they will only enhance with contrast for about 2 weeks after initial inflammation. So that aspect of an MRI being done is more just a chance encounter of the correct timing of the MRI. And like I said earlier not everyone with MS has lesions that even show up on an MRI. They can either be too small for the MRI to see, Happen to be between the slices of the MRI, or be in areas that an MRI can't image.
A relapse is defined by worsening of symptoms or new symptoms that last for more than a number of days. I can't remember the number of days right now though. I don't really keep track of that as I'm one of those with PPMS (primary progressive).
4). It depends on the areas. For example Thigh and calf tingling are probably controlled by the same nerve so it is considered the same space. But cheek and shin are different nerves so in that case it would. It is all about nerves.
5) I have not heard that about pregnancy before. Al I ever heard was that relapses seem to happen more often right after delivery due to the drastic change in hormones. But I'm also not a woman so I don't really keep track of that type of information. But I would suspect like just about everything else for pwMS it is an individual experience for each person.
6) That is anybodies guess as not every pwMS has o--bands. But if you did developed o-bands they never go away.
7) This one I can't really answer as I don't know what that area is. But I suspect that like just about everything else with MS probably.
Dennis
1) I have heard of others with clinical diagnoses of MS based on symptoms, history, and a Neuro Exam. Some pwMS (People w/ MS) have no lesions that are found w/ a MRI, or atypical lesions. It can also depend on how the MRI was done or what strength the machine was as to if any lesions are found. An MRI needs to be done with the MS protocol to have the best chance for lesions to be found. Also if it is done on an open MRI their is less chance for them to be found.
You also stated that the c-spine MRI was done on a 0.3 T machine. I have never heard of that power for a MRI so hopefully that was a typo. IN order to find lesions in the spine they need to be done on 2.0 or greater machine as they are very hard to see with an MRI.
Personally my brain lesions are of the atypical type and only 3 of them. But I have had MS for over 25 years now. But my MRI report also included that key word of what it could be (demyelination). I suspect that being in the report and your history and symptoms is what the second Neuro is basing his diagnoses on.
2) As immisceo stated an LP is not definitive for the diagnoses of MS one way or the other. Some pwMS have the o-bands and some, like myself, don't. A lot of Neuros from what I have heard are not doing the LP any more due to this fact and that some people have a lot of nasty side effect for the LP (severe headache). Personally I have had an LP done twice without the dreaded headache or any other problems.
3). Relapses are a trickier question to answer as they seem to range all over the place fro one person to the next. It seems that each pwMS has to learn when and what is their relapses like, especially with the number of forms of MS people have (RRMS,SPMS,PPMS,...). Another thing that effects the answer is how long, if at all, the damage can be repaired by your body. Both of my feet have been number for around 15 years now due to the damage done by MS.
When it comes to the MRI lesions they will only enhance with contrast for about 2 weeks after initial inflammation. So that aspect of an MRI being done is more just a chance encounter of the correct timing of the MRI. And like I said earlier not everyone with MS has lesions that even show up on an MRI. They can either be too small for the MRI to see, Happen to be between the slices of the MRI, or be in areas that an MRI can't image.
A relapse is defined by worsening of symptoms or new symptoms that last for more than a number of days. I can't remember the number of days right now though. I don't really keep track of that as I'm one of those with PPMS (primary progressive).
4). It depends on the areas. For example Thigh and calf tingling are probably controlled by the same nerve so it is considered the same space. But cheek and shin are different nerves so in that case it would. It is all about nerves.
5) I have not heard that about pregnancy before. Al I ever heard was that relapses seem to happen more often right after delivery due to the drastic change in hormones. But I'm also not a woman so I don't really keep track of that type of information. But I would suspect like just about everything else for pwMS it is an individual experience for each person.
6) That is anybodies guess as not every pwMS has o--bands. But if you did developed o-bands they never go away.
7) This one I can't really answer as I don't know what that area is. But I suspect that like just about everything else with MS probably.
Dennis
Personally (and this is just personally) I would feel more comfortable with your first neuro's approach. Having a baseline MRI and a follow-up later to compare for changes in the absence of lesions in the most typical areas or unambiguous exam results seems reasonable, if frustrating.
Others may not agree and have sound reasons for disagreeing, but there's something about the speed of the second's diagnosis in light of your migraines, history, and findings that doesn't sit quite right with me. MS can take time to diagnose. It can indeed also be quite fast, but that's usually in light of utterly unequivocal findings which he himself admits he hasn't found.
Again, his stance may mirror the approach of other people's neuros here who agree with him and got their diagnosis similarly. They will have more informed feedback on this. But there's just a 'feeling' I get that he was not exacting enough. But 'feelings' are a dime a dozen! And probably not too helpful to you.
As far as what's enough, the minutiae of the McDonald Criteria and how to-the-letter of what counts and what doesn't kind of fries my brain a little. History + signs (objectively observable during an exam) may indeed get a diagnosis, but some neuros want to witness the signs or flares themselves over time, or the signs in conjunction with MRI evidence. It's dissemination in time and space at the end of the day, as you mentioned. But the specifics of what they feel counts can vary.
Yes, LPs can be skipped if the other aspects of the criteria are clear cut. It's more of a refining tool than a home-run. In your case, I might get it. If you're not showing lesions in typical areas, having unique o-bands could help your doctors know they're on the right track. But at the same time, people with MS sometimes have no unique o-bands. I know. It's frustrating! So many shades of grey with MS!
I've never had sensations as you describe, but that just means my personal MS hasn't manifested in a twinges, tingles, shocks, or pin-pricks kind of way yet. But usually having those appear bilaterally is unlikely related to MS (But only unlikely, Not impossible). As you are also dealing with the auto-accident and minor cervical spine abnormalities, I'd hesitate to say anything more specific. I just don't know if it could be related to MS or not.
Sorry I couldn't be more help. It can be a little quiet around here on weekends, so please don't feel you're being ignored if no one else chimes in soon. They will, I'm sure.
Others may not agree and have sound reasons for disagreeing, but there's something about the speed of the second's diagnosis in light of your migraines, history, and findings that doesn't sit quite right with me. MS can take time to diagnose. It can indeed also be quite fast, but that's usually in light of utterly unequivocal findings which he himself admits he hasn't found.
Again, his stance may mirror the approach of other people's neuros here who agree with him and got their diagnosis similarly. They will have more informed feedback on this. But there's just a 'feeling' I get that he was not exacting enough. But 'feelings' are a dime a dozen! And probably not too helpful to you.
As far as what's enough, the minutiae of the McDonald Criteria and how to-the-letter of what counts and what doesn't kind of fries my brain a little. History + signs (objectively observable during an exam) may indeed get a diagnosis, but some neuros want to witness the signs or flares themselves over time, or the signs in conjunction with MRI evidence. It's dissemination in time and space at the end of the day, as you mentioned. But the specifics of what they feel counts can vary.
Yes, LPs can be skipped if the other aspects of the criteria are clear cut. It's more of a refining tool than a home-run. In your case, I might get it. If you're not showing lesions in typical areas, having unique o-bands could help your doctors know they're on the right track. But at the same time, people with MS sometimes have no unique o-bands. I know. It's frustrating! So many shades of grey with MS!
I've never had sensations as you describe, but that just means my personal MS hasn't manifested in a twinges, tingles, shocks, or pin-pricks kind of way yet. But usually having those appear bilaterally is unlikely related to MS (But only unlikely, Not impossible). As you are also dealing with the auto-accident and minor cervical spine abnormalities, I'd hesitate to say anything more specific. I just don't know if it could be related to MS or not.
Sorry I couldn't be more help. It can be a little quiet around here on weekends, so please don't feel you're being ignored if no one else chimes in soon. They will, I'm sure.
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Also, you didn't mention if either neuro did any testing such as EMGs, or any type of evoked potentials or a VEP,etc. This is usually considered part of the diagnostic process.
Ren