Aa
New here. Please help, waiting on Dx
I'm really hoping you wonderful people can offer me some advice or comments while I wait for more tests to rule out (or in) MS. Of course I'm very upset about my neurologist's suggestion of MS, but my biggest concern is that it's something else that is not being properly treated. I'll start with my backstory and symptoms and please forgive the length of this post....
First, I must point out that I'm a scientist and by nature analyze everything! This turns out to be very very challenging in a situation like this because I research every symptom and then research every differential Dx for that symptom then research the common symptoms that I don't have to try to rule things out....all the while flooding my tired brain with way too much info and only more questions. So I figured that asking the people who really know the disease was my best resource.
I am a 36 yo previously active and healthy female
I've had a "bad back" for as long as I can remember. Always seems to be muscular but is a recurring problem.
I have moderate iron deficiency anemia with an unknown cause. Ferritin levels are extremely low.
All other common blood work normal ie CBC (aside from reds, Hb and Htc), CMP, TSH
I've been told by drs that I have superficial ulnar nerves which results in pain at elbows and tingling pinky and ring fingers usually after sitting at my computer for an extended time.
I do not recall any other past neuro symptoms although I can't be sure that they weren't there and dismissed. I did have one small spot on my left forearm that was very sensitive and painful to the touch for a week or so a while back and was similar to the description of shingles pain.
In March of this year I was involved in a sporting event that required a lot of heavy lifting.
In April I began having daily headaches and a general feeling of malaise which was accompanied by a positive flu test. Other blood work normal aside from anemia.
Headaches continued through the month of May. I was miserable everyday and started having additional neuro symptoms such as some intermitting pain and tingling in arms and legs (both bilateral), inability to concentrate (I attributed that to the headaches), some clumsiness with my hands, foggyness and severe lower back pain and neck pain.
PCP ordered a brain MRI for headaches which showed multiple small periventricular foci of hyper intensity, none of which enhanced with contrast.
I was referred to a neurologist
I believe my neuro exam was rather normal. I have no loss of balance or coordination and easily performed all the tasks that were asked of me. The Dr. even commented on how fast I was walking on my heels and how strong my arms and legs were. At appointment I had numbness and tingling in hands, legs, and feet plus one constant spot of tingling in the middle of my back, just to the right of my spine. He ordered the standard MS blood work up to rule out all the mimics. All normal.
I have no noticeable visual changes. VEP was ordered and came back abnormal with a left eye delay. Although I know this is a sensitive test, I'm not 100% convinced of the results as the EEG tech never instructed me on how to take the test so therefore my eyes were wondering the entire time and not focusing on the center of the pattern. So while this has an abnormal result, I don't put much stock in it in my case.
At this point I started developing additional symptoms. Tingling in fingers turned into pain in arms, hands, and wrists (bilateral). My fingers began to lock up especially in the morning and evenings. The locking was not painful just seemed to be a slipping of the tendon where I was able to open my hands but not with a fluid motion. After research, I could best explain it as a possible inflammation of the tendon sheath which was preventing the tendon from moving freely. My toes and knees seem to feel similar but not as drastic. EMG of upper extremities was ordered and was normal. Blood tests for Sed Rate, ANA, CRP, RA all normal.
MRI of spine (cervical, thoracic, and lumbar) was ordered. No lesions were found. It did show a herniated cervical disc with mild stenosis and a small herniated lumbar disc. My neuro says that he believes these two herniations would cause pain but not the symptoms in the extremities. EMG of lower was ordered and scheduled for tomorrow. I have a lumbar puncture scheduled for next week.
I had an appt with PCP who commented that he is not convinced that it's MS. Says something is definitely wrong but wouldn't say MS. Tells me that all of my blood work (and I've had a lot) is good. I even have good levels of Vit D which is very rare in the North East where I live. I look healthy and can move and function well (aside from my low back pain). Also went on to scare me about the current MS drugs and why I don't want to have to take them.
Currently my symptoms are muscle tightness and pain in hands, arms, shoulders, legs, and feet. Fingers and toes are still locking. Headaches have been gone since June. Tingling and numbness in legs and feet are mostly gone but will come and go based on my level of activity for the day. Almost always bilateral and mostly relieved by resting. The tingling in my back is still there and constant although it is relieved by laying down as well. I've started having muscle twitching in my legs and occasionally in my hands and rarely in my face.
So here are my questions. I really hope someone can help me.
Abnormal brain MRI, abnormal VEP, and multiple neuro symptoms all suggestive of MS.
But, if this was an MS flare, and if not my first then most definitely the most significant one I've had, why would none of the small foci enhance on MRI?
I also find it strange that all of my extremity symptoms occur bilaterally and are mostly relieved by rest. If there are no lesions in my spine and EMGs are normal, would a small spot in my brain cause so much damage bilaterally?
Is it common to have symptoms of just parasthesia without other neuro symptoms that affect vision, balance, coordination, speech, etc?
Any ideas on my fingers locking? I can't figure out how to attribute it to MS. My hands are strong and dexterous so I don't think it's muscle related. It really feels like inflammation but all of the inflammatory markers that were tested came back normal.
Any opinions on how possible it is that:
Most of my symptoms are simply caused by my bad back,
The VEP results were incorrect,
AND the spots on the brain MRI are due to something other than demyelination?
I guess I'm still holding out hope that it's a series of unrelated coincidences.
First, I must point out that I'm a scientist and by nature analyze everything! This turns out to be very very challenging in a situation like this because I research every symptom and then research every differential Dx for that symptom then research the common symptoms that I don't have to try to rule things out....all the while flooding my tired brain with way too much info and only more questions. So I figured that asking the people who really know the disease was my best resource.
I am a 36 yo previously active and healthy female
I've had a "bad back" for as long as I can remember. Always seems to be muscular but is a recurring problem.
I have moderate iron deficiency anemia with an unknown cause. Ferritin levels are extremely low.
All other common blood work normal ie CBC (aside from reds, Hb and Htc), CMP, TSH
I've been told by drs that I have superficial ulnar nerves which results in pain at elbows and tingling pinky and ring fingers usually after sitting at my computer for an extended time.
I do not recall any other past neuro symptoms although I can't be sure that they weren't there and dismissed. I did have one small spot on my left forearm that was very sensitive and painful to the touch for a week or so a while back and was similar to the description of shingles pain.
In March of this year I was involved in a sporting event that required a lot of heavy lifting.
In April I began having daily headaches and a general feeling of malaise which was accompanied by a positive flu test. Other blood work normal aside from anemia.
Headaches continued through the month of May. I was miserable everyday and started having additional neuro symptoms such as some intermitting pain and tingling in arms and legs (both bilateral), inability to concentrate (I attributed that to the headaches), some clumsiness with my hands, foggyness and severe lower back pain and neck pain.
PCP ordered a brain MRI for headaches which showed multiple small periventricular foci of hyper intensity, none of which enhanced with contrast.
I was referred to a neurologist
I believe my neuro exam was rather normal. I have no loss of balance or coordination and easily performed all the tasks that were asked of me. The Dr. even commented on how fast I was walking on my heels and how strong my arms and legs were. At appointment I had numbness and tingling in hands, legs, and feet plus one constant spot of tingling in the middle of my back, just to the right of my spine. He ordered the standard MS blood work up to rule out all the mimics. All normal.
I have no noticeable visual changes. VEP was ordered and came back abnormal with a left eye delay. Although I know this is a sensitive test, I'm not 100% convinced of the results as the EEG tech never instructed me on how to take the test so therefore my eyes were wondering the entire time and not focusing on the center of the pattern. So while this has an abnormal result, I don't put much stock in it in my case.
At this point I started developing additional symptoms. Tingling in fingers turned into pain in arms, hands, and wrists (bilateral). My fingers began to lock up especially in the morning and evenings. The locking was not painful just seemed to be a slipping of the tendon where I was able to open my hands but not with a fluid motion. After research, I could best explain it as a possible inflammation of the tendon sheath which was preventing the tendon from moving freely. My toes and knees seem to feel similar but not as drastic. EMG of upper extremities was ordered and was normal. Blood tests for Sed Rate, ANA, CRP, RA all normal.
MRI of spine (cervical, thoracic, and lumbar) was ordered. No lesions were found. It did show a herniated cervical disc with mild stenosis and a small herniated lumbar disc. My neuro says that he believes these two herniations would cause pain but not the symptoms in the extremities. EMG of lower was ordered and scheduled for tomorrow. I have a lumbar puncture scheduled for next week.
I had an appt with PCP who commented that he is not convinced that it's MS. Says something is definitely wrong but wouldn't say MS. Tells me that all of my blood work (and I've had a lot) is good. I even have good levels of Vit D which is very rare in the North East where I live. I look healthy and can move and function well (aside from my low back pain). Also went on to scare me about the current MS drugs and why I don't want to have to take them.
Currently my symptoms are muscle tightness and pain in hands, arms, shoulders, legs, and feet. Fingers and toes are still locking. Headaches have been gone since June. Tingling and numbness in legs and feet are mostly gone but will come and go based on my level of activity for the day. Almost always bilateral and mostly relieved by resting. The tingling in my back is still there and constant although it is relieved by laying down as well. I've started having muscle twitching in my legs and occasionally in my hands and rarely in my face.
So here are my questions. I really hope someone can help me.
Abnormal brain MRI, abnormal VEP, and multiple neuro symptoms all suggestive of MS.
But, if this was an MS flare, and if not my first then most definitely the most significant one I've had, why would none of the small foci enhance on MRI?
I also find it strange that all of my extremity symptoms occur bilaterally and are mostly relieved by rest. If there are no lesions in my spine and EMGs are normal, would a small spot in my brain cause so much damage bilaterally?
Is it common to have symptoms of just parasthesia without other neuro symptoms that affect vision, balance, coordination, speech, etc?
Any ideas on my fingers locking? I can't figure out how to attribute it to MS. My hands are strong and dexterous so I don't think it's muscle related. It really feels like inflammation but all of the inflammatory markers that were tested came back normal.
Any opinions on how possible it is that:
Most of my symptoms are simply caused by my bad back,
The VEP results were incorrect,
AND the spots on the brain MRI are due to something other than demyelination?
I guess I'm still holding out hope that it's a series of unrelated coincidences.
I hope you will get some answers soon.
As to the comment about MS usually being unilateral. This is not 100% all the time. Some of my symptoms are bilateral and I do have a diagnosis of MS.
I understand that it's hard not to worry about all this. I am not going to tell you not to worry, just wish you luck and hope you get some answers to your symptoms.
As to the comment about MS usually being unilateral. This is not 100% all the time. Some of my symptoms are bilateral and I do have a diagnosis of MS.
I understand that it's hard not to worry about all this. I am not going to tell you not to worry, just wish you luck and hope you get some answers to your symptoms.
COMMUNITY LEADER
Hi and welcome to our little MS community,
Firstly let me just say that i totally understand the need to tick all the logic boxes and discover the ins and outs of it all but when it comes to MS and other neurological conditions, the most important thing i've learnt over the years, is that just about anything that can happen. The weirdly bizarre is more the norm.......occam's razor (the simplest explanation is usually correct) just doesn't necessarily seem to work as it usually does....
But having said that, i have to say that I don't think MS should actually be at the top of your possibility list, basically because it is more common for MS to present with unilateral sx's and extremely unusual for MS to present with sx's bilaterally and or in all peripheral limbs. The red flags indicating the potential for the alternate explanations are generally sx's that are bilateral, all peripherals, spreading, rapid progression, symmetrical etc
I don't think your spinal MRI results and back history should be over looked as a potential cause, structural spinal issues can often cause sx's bilaterally or all peripheral's such as you've described. Structural spinal damage would effect the 'peripheral nervous system', and can definitely cause similar sx's like parathesia etc But MS (which basically means multiple scars) brain and or spinal cord lesions, which actually effects the 'central nervous system', isn't known to cause parasthesia the same way PN does.
Basic answers......
Q) why would none of the small foci enhance on MRI?
A) There is a window of 30-40 days for lesions to enhance (light up) so the MRI may not have been run during the needed time frame to catch it.
Q)If there are no lesions in my spine and EMGs are normal, would a small spot in my brain cause so much damage bilaterally?
A) No........technically that's only assuming there isn't any other lesions (multiple brain locations and spinal cord) that the MRI is unable to pick up.
Q) Is it common to have symptoms of just parasthesia without other neuro symptoms that affect vision, balance, coordination, speech, etc?
A) The most common (researched) sx's leading to an MS dx are visual eg optic neuritis, nystagmus, double vision etc but it's still possible to be only experiencing parasthesia and be dx with MS.
Q) Any ideas on my fingers locking?
A) hmmmm not sure i get what you mean exactly, when similar has happened to me, it's honestly been OMG painful, stuck unnaturally twisted and locked solid until it releases......so probably not the same thing. Guessing, It could possibly be related to the peripheral nerve entrapment, that's if you do have ulnar nerve problems.
A series of unrelated coincidences is actually possible.......from my understanding you have a long long history of back issues, in March aggravated your back and a month later picked up a flu bug. May comes along and the flu is gone but your neck and back is still very painful and your dealing with a prolonged migraine headache (any prior history of migraine?) and all limb parasthesia etc........to me the flu is what's unrelated but everything else can be related, why couldn't you aggravating your spinal issue be the catalyst?
I think at this stage, exactly what the problem is, is yet to be determined. imho your sx's are not very suggestive of MS and your MRI's would still leave alternative explanations possible. I really do think it's in your best interest to try to keep open minded with the causation..........MS may not end up being the right answer so please hold on to hope!
Cheers.........JJ
Firstly let me just say that i totally understand the need to tick all the logic boxes and discover the ins and outs of it all but when it comes to MS and other neurological conditions, the most important thing i've learnt over the years, is that just about anything that can happen. The weirdly bizarre is more the norm.......occam's razor (the simplest explanation is usually correct) just doesn't necessarily seem to work as it usually does....
But having said that, i have to say that I don't think MS should actually be at the top of your possibility list, basically because it is more common for MS to present with unilateral sx's and extremely unusual for MS to present with sx's bilaterally and or in all peripheral limbs. The red flags indicating the potential for the alternate explanations are generally sx's that are bilateral, all peripherals, spreading, rapid progression, symmetrical etc
I don't think your spinal MRI results and back history should be over looked as a potential cause, structural spinal issues can often cause sx's bilaterally or all peripheral's such as you've described. Structural spinal damage would effect the 'peripheral nervous system', and can definitely cause similar sx's like parathesia etc But MS (which basically means multiple scars) brain and or spinal cord lesions, which actually effects the 'central nervous system', isn't known to cause parasthesia the same way PN does.
Basic answers......
Q) why would none of the small foci enhance on MRI?
A) There is a window of 30-40 days for lesions to enhance (light up) so the MRI may not have been run during the needed time frame to catch it.
Q)If there are no lesions in my spine and EMGs are normal, would a small spot in my brain cause so much damage bilaterally?
A) No........technically that's only assuming there isn't any other lesions (multiple brain locations and spinal cord) that the MRI is unable to pick up.
Q) Is it common to have symptoms of just parasthesia without other neuro symptoms that affect vision, balance, coordination, speech, etc?
A) The most common (researched) sx's leading to an MS dx are visual eg optic neuritis, nystagmus, double vision etc but it's still possible to be only experiencing parasthesia and be dx with MS.
Q) Any ideas on my fingers locking?
A) hmmmm not sure i get what you mean exactly, when similar has happened to me, it's honestly been OMG painful, stuck unnaturally twisted and locked solid until it releases......so probably not the same thing. Guessing, It could possibly be related to the peripheral nerve entrapment, that's if you do have ulnar nerve problems.
A series of unrelated coincidences is actually possible.......from my understanding you have a long long history of back issues, in March aggravated your back and a month later picked up a flu bug. May comes along and the flu is gone but your neck and back is still very painful and your dealing with a prolonged migraine headache (any prior history of migraine?) and all limb parasthesia etc........to me the flu is what's unrelated but everything else can be related, why couldn't you aggravating your spinal issue be the catalyst?
I think at this stage, exactly what the problem is, is yet to be determined. imho your sx's are not very suggestive of MS and your MRI's would still leave alternative explanations possible. I really do think it's in your best interest to try to keep open minded with the causation..........MS may not end up being the right answer so please hold on to hope!
Cheers.........JJ
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