Hi, I'm new to MSWorld and I guess I'm just looking for some people who understand and maybe can answer a few questions or even just provide some experience examples to help me feel less alone in all... I apologize in advance for the ramblings you will read below. It will probably read exactly like I think.
My symptoms started in late August 2015 with pain in my left butt cheek (sciatic nerve) that shot electrical pains down my leg and into my foot. The pain quickly got worse and turned into numbness in my left foot up to my knee. By early October I began to have balance issues, dizziness, numbness in my hands, shooting/electrical pains down my left arm, and vision problems (I lost sight briefly twice and was left with double vision and blurriness when it returned). My PCP didn't quite know what to do so she sent me for a lot of blood tests (CBC, diabetes screen, thyroid test, cholesterol, regular female stuff, and typical physical type screenings). Everything came back normal, so she said to rest and "come back if things got worse".
During November I began to feel extreme vertigo which resulted in severe nausea/vomiting. By that time I had issues each morning with both feet/legs being numb/stiff upon waking for 15-20 minutes (almost to the point where I couldn't walk on them). I had the same issue with both arms (almost as if they both fell asleep while I was asleep). On top of that, I began having migraines 3-4 days a week. Obviously this was what my PCP meant by "come back if things got worse" so I went back. Again, my PCP was unsure what was going on so she sent me for further blood work (this time Ana, b12, RA, Sed Rate, another CBC, CRProtein, Lyme, pregnancy test). She sent me home with a prescription for Topomax, which is a migraine medication that I have taken previously and done well with. All the blood work came back normal. So again, "come back if things got worse". So of course, things got worse. Long story short, this is where things get complicated. Now I had issues that become hard to delineate between what might have been caused by starting a the Topomax and what might have been what the doctors now believe *might* be MS.
In December, I had another visual disturbance where I lost sight in one eye and then gained it back again with increased blurriness and double vision. Numbness in arms and legs worsened, vertigo/nausea continued, dizziness persisted, Migraines continued (Topomax takes about a month to fully absorb into your system)... but now I had new symptoms: extreme fatigue (literally could not keep my eyes open after 2pm, I compensated with a lot of coffee), issues with my bladder (might have been caused by the coffee), extreme memory and cognitive issues (potentially a side effect of beginning the Topomax).
January rolls around and I'm still not doing well. I now have such terrible exhaustion that I cannot complete daily tasks (and this is kinda crazy, because I'm a stay at home mom, so I really am not doing anything strenuous during the day). I began to have extreme muscle weakness (that feeling like your arm turns into a brick). I began to be incapable of gripping my pen to write and could no longer use my fingers to buckle, snap, open lids, etc (I couldn't feel anything and I just couldnt grip anything).
So at the middle of January I went back to my PCP again for the follow up and to update her on my new "worsenings". It was at this appointment that my PCP suggested MS. She said she wanted to send me for a brain MRI to "rule out MS". She also sent me to get a Vitamin D blood test. Surprise, it actually came back that I was slightly deficient (so she started me on a supplement). At this point it was also the beginning of allergy season where I live, so I started taking my annual antihistamine.
So the MRI was scheduled for the 3 weeks later at beginning of February. Fast forward, MRI gets done and I find out that everything comes back normal on my brain MRI. Yey! Happy happy me! At that point as far as I know MS is no longer an option and according to my PCP we are talking about "Complex Migraines". So my PCP wants to send me to a Neurologist anyway to discuss my symptoms, show him my MRI, discuss my medical history, and make sure everything is good to go.
In the mean time... it takes 2 months to schedule an appointment with a Neurologist that takes my insurance. That appointment was this morning. Soooo, surprise surprise, I'm feeling much better now. I have some residual weakness in my left arm (still get that "my arm is a brick" feeling at least once a day). My left hand still had a sense of "confusion" sometimes. Still have off/on numbness and tingling in my hands/feet. Occasionally have a wave of vertigo and still have dizziness fairly constantly.
My migraines are fully controlled with the Topomax (and all the side effects from starting that medication have subsided). Still easily tired, but I maintain a fairly consistent intake of caffeine to counteract that. I've still got the pins/needles thing going on in my torso (strangely only after I take a shower, maybe a result from the heat of the water??). Other then that I am not having any walking issues or any of the other issues that I had through October-February.
I discussed all of this with my Neurologist today and he asked if I had ever had an of these pains or tingling problems before... well isn't that an interesting question that NO ONE ever asked me before. So that was a fun little stroll through history. I had nerve pain and tingling in my left wrist/hand in 2005, nerve pain and tingling shooting down my left elbow to wrist in 2007, then had tingling and numbness in my left side legs/arms in 2011 and 2013 after my last two pregnancies... That tid-bit of information seemed to be the "straw that broke the camels back" for my neurologist.
He left the room for a bit and came back to talk to me after about 20 minutes (which he had spent looking at my medical records, MRI, lab results, etc). He said that my MRI looked normal and had no signs of MS (but I did have a gnarly sinus infection back in February, probably because of the start of allergy season), but that he didn't expect my Brain MRI to show MS because I had Spinal MS symptoms and that he wouldn't have expected to see any lesions on a Brain MRI of mine, but would have expected to see small lesions on a Cervical Spine MRI (but that since I started to feel better over a month ago we probably wouldn't be able to see them???)
Then he said that he wanted to send me for an Evoked Potentials Test to see if there is any damage to my nerves (because I still have some blurriness in my vision and the numbness comes and goes). So now, after 2 months of thinking I was back on the Migraine train, I apparently am back on the MS train... and I am in limbo land waiting on the EPT.
So, here are my questions after that long winded shpeal...
1- sounds like MS? I know your not doctors, but in your experience? If not MS, do these specific symptoms sound like any of the MS mimics to you? I know the whole "don't count your chickens" thing, but I'm a realist and I'd rather go ahead and accept it and get to researching and learning what I need to know about MS so that I can be as prepared as possible IF i do end up being diagnosed with it.
2- I know its unlikely but possible to have lesions on the spine but not on the brain, especially in the beginning stages... it's possible that my nerve damages early on were due to traumas and not to MS (I was in Architecture School, so it could actually be a Carpel Tunnel related injury instead)... so if those early issues were traumas (assuming this is MS) then I'm in the early stages... So, lesions can "disappear" if it's RRMS, right? so it's possible that what my Neurologist said about them not showing up on a Cervical Spine MRI because it's past a month after my "episode" got better could be true? I just want to make sure that I shouldn't be pushing for a Cervical Spine MRI (it would take another month to get it scheduled anyway)
3- the Evoked Potentials Test will test damages even after the "episode" is over, right? so even if I'm not currently in the middle of a severe "episode" it will still show whether or not there is damage to the nerve signals, right?
That seems like enough for my first post... Snoopy always seems to have something helpful and realistic to say, I look forward to hopefully reading some of her realism in response to ramblings.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
My symptoms started in late August 2015 with pain in my left butt cheek (sciatic nerve) that shot electrical pains down my leg and into my foot. The pain quickly got worse and turned into numbness in my left foot up to my knee. By early October I began to have balance issues, dizziness, numbness in my hands, shooting/electrical pains down my left arm, and vision problems (I lost sight briefly twice and was left with double vision and blurriness when it returned). My PCP didn't quite know what to do so she sent me for a lot of blood tests (CBC, diabetes screen, thyroid test, cholesterol, regular female stuff, and typical physical type screenings). Everything came back normal, so she said to rest and "come back if things got worse".
During November I began to feel extreme vertigo which resulted in severe nausea/vomiting. By that time I had issues each morning with both feet/legs being numb/stiff upon waking for 15-20 minutes (almost to the point where I couldn't walk on them). I had the same issue with both arms (almost as if they both fell asleep while I was asleep). On top of that, I began having migraines 3-4 days a week. Obviously this was what my PCP meant by "come back if things got worse" so I went back. Again, my PCP was unsure what was going on so she sent me for further blood work (this time Ana, b12, RA, Sed Rate, another CBC, CRProtein, Lyme, pregnancy test). She sent me home with a prescription for Topomax, which is a migraine medication that I have taken previously and done well with. All the blood work came back normal. So again, "come back if things got worse". So of course, things got worse. Long story short, this is where things get complicated. Now I had issues that become hard to delineate between what might have been caused by starting a the Topomax and what might have been what the doctors now believe *might* be MS.
In December, I had another visual disturbance where I lost sight in one eye and then gained it back again with increased blurriness and double vision. Numbness in arms and legs worsened, vertigo/nausea continued, dizziness persisted, Migraines continued (Topomax takes about a month to fully absorb into your system)... but now I had new symptoms: extreme fatigue (literally could not keep my eyes open after 2pm, I compensated with a lot of coffee), issues with my bladder (might have been caused by the coffee), extreme memory and cognitive issues (potentially a side effect of beginning the Topomax).
January rolls around and I'm still not doing well. I now have such terrible exhaustion that I cannot complete daily tasks (and this is kinda crazy, because I'm a stay at home mom, so I really am not doing anything strenuous during the day). I began to have extreme muscle weakness (that feeling like your arm turns into a brick). I began to be incapable of gripping my pen to write and could no longer use my fingers to buckle, snap, open lids, etc (I couldn't feel anything and I just couldnt grip anything).
So at the middle of January I went back to my PCP again for the follow up and to update her on my new "worsenings". It was at this appointment that my PCP suggested MS. She said she wanted to send me for a brain MRI to "rule out MS". She also sent me to get a Vitamin D blood test. Surprise, it actually came back that I was slightly deficient (so she started me on a supplement). At this point it was also the beginning of allergy season where I live, so I started taking my annual antihistamine.
So the MRI was scheduled for the 3 weeks later at beginning of February. Fast forward, MRI gets done and I find out that everything comes back normal on my brain MRI. Yey! Happy happy me! At that point as far as I know MS is no longer an option and according to my PCP we are talking about "Complex Migraines". So my PCP wants to send me to a Neurologist anyway to discuss my symptoms, show him my MRI, discuss my medical history, and make sure everything is good to go.
In the mean time... it takes 2 months to schedule an appointment with a Neurologist that takes my insurance. That appointment was this morning. Soooo, surprise surprise, I'm feeling much better now. I have some residual weakness in my left arm (still get that "my arm is a brick" feeling at least once a day). My left hand still had a sense of "confusion" sometimes. Still have off/on numbness and tingling in my hands/feet. Occasionally have a wave of vertigo and still have dizziness fairly constantly.
My migraines are fully controlled with the Topomax (and all the side effects from starting that medication have subsided). Still easily tired, but I maintain a fairly consistent intake of caffeine to counteract that. I've still got the pins/needles thing going on in my torso (strangely only after I take a shower, maybe a result from the heat of the water??). Other then that I am not having any walking issues or any of the other issues that I had through October-February.
I discussed all of this with my Neurologist today and he asked if I had ever had an of these pains or tingling problems before... well isn't that an interesting question that NO ONE ever asked me before. So that was a fun little stroll through history. I had nerve pain and tingling in my left wrist/hand in 2005, nerve pain and tingling shooting down my left elbow to wrist in 2007, then had tingling and numbness in my left side legs/arms in 2011 and 2013 after my last two pregnancies... That tid-bit of information seemed to be the "straw that broke the camels back" for my neurologist.
He left the room for a bit and came back to talk to me after about 20 minutes (which he had spent looking at my medical records, MRI, lab results, etc). He said that my MRI looked normal and had no signs of MS (but I did have a gnarly sinus infection back in February, probably because of the start of allergy season), but that he didn't expect my Brain MRI to show MS because I had Spinal MS symptoms and that he wouldn't have expected to see any lesions on a Brain MRI of mine, but would have expected to see small lesions on a Cervical Spine MRI (but that since I started to feel better over a month ago we probably wouldn't be able to see them???)
Then he said that he wanted to send me for an Evoked Potentials Test to see if there is any damage to my nerves (because I still have some blurriness in my vision and the numbness comes and goes). So now, after 2 months of thinking I was back on the Migraine train, I apparently am back on the MS train... and I am in limbo land waiting on the EPT.
So, here are my questions after that long winded shpeal...
1- sounds like MS? I know your not doctors, but in your experience? If not MS, do these specific symptoms sound like any of the MS mimics to you? I know the whole "don't count your chickens" thing, but I'm a realist and I'd rather go ahead and accept it and get to researching and learning what I need to know about MS so that I can be as prepared as possible IF i do end up being diagnosed with it.
2- I know its unlikely but possible to have lesions on the spine but not on the brain, especially in the beginning stages... it's possible that my nerve damages early on were due to traumas and not to MS (I was in Architecture School, so it could actually be a Carpel Tunnel related injury instead)... so if those early issues were traumas (assuming this is MS) then I'm in the early stages... So, lesions can "disappear" if it's RRMS, right? so it's possible that what my Neurologist said about them not showing up on a Cervical Spine MRI because it's past a month after my "episode" got better could be true? I just want to make sure that I shouldn't be pushing for a Cervical Spine MRI (it would take another month to get it scheduled anyway)
3- the Evoked Potentials Test will test damages even after the "episode" is over, right? so even if I'm not currently in the middle of a severe "episode" it will still show whether or not there is damage to the nerve signals, right?
That seems like enough for my first post... Snoopy always seems to have something helpful and realistic to say, I look forward to hopefully reading some of her realism in response to ramblings.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
My doctor is an MS researcher with decades of experience and even he misses things from time to time, which he readily admits. When I was first diagnosed, I had very few small lesions on the brain. It doesn't necessarily tell them everything they need to know, which is why the entire picture has to be put together from a lot of pieces, over time. I would definitely go to an MS Center or MS specialist to have your results evaluated (if you haven't already). And keep a timeline of symptoms and dates, which I think definitely helps. Try not to worry, but keep carving away at it until you get the answers you need. Good luck to you.
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