Good afternoon, my online friends. I would greatly appreciate it if you all would read and give any feedback on my symptom timeline. It is approximately 1 1/3 pages long in Word.
I also have a Top 3 Life Impacting List, which include my vision, weakness/pain on the right side of my body, and fatigue. I have described how these things have affected my life (very briefly, for example, nervousness about not being able to drive at night; blurriness/double vision in spite of my glasses though they help some; inability to exercise on treadmill for 45 minutes like I used to; being almost exhausted by the end of the workday). Anyway, here is the timeline:
1. February 8, 2012 – Awoken in the night by the feeling that all of the teeth, upper and lower, on the right side were hurting. Dentist found and filled a small cavity; nothing further. This pain lasted for about two days. Wake approximately every 4-6 weeks with this “phantom tooth pain” and it usually lasts 1-2 days.
2. June 6, 2012 and June 24, 2012 – Stabbing/zapping “zzt” at the base of the skull. Was so intense I could not speak.
3. Since initial occurrence of item 2, on-going zaps and “zzt” sensation extending down my spine and right arm at times when head is moved downward.
4. June 8, 2012 and June 24, 2012 – “Momentary paralysis.” Felt like someone was squeezing my middle and I couldn’t move. Since the initial episode, I have instances of a tight pressure sensation in my ribs and it feels like my ribs are poking me.
5. July 7, 2012 – Fell while walking around the pool (flat surface). Right leg “gives out.” I stumble when I walk for no apparent reason.
6. July 11, 2012 – Until this date had no problems with vision. Did not wear glasses of any type. Woke to blurry vision. While driving to work lights appeared double (traffic lights, car headlights). White lights green and red lights are most. For example, green traffic light appears to have one light on the bottom, one on the top and and two side-by-side, in a diamond shape. I also cannot read street signs, especially if the sign is white with black lettering, or if the letters are in white. Lit signs and neon signs (example: gas station signs) doubled/blurry. This has not gone away (saw Ophthalmologist on October 4, 2012 – see item 13 below).
7. July 16, 2012 – Right arm felt very weak, and when I picked up my water bottle it felt as though I’d hit my “funny bone.” Since then, my right arm feels varying degrees of being “asleep” all the time.
8. July 24, 2012 – While eating supper, sharp pain began on right side of face, jaw, cheek. Inside of mouth tingly, like Novocaine wearing off. Right eye pressure/pain, sharp pain in cheek, numbness on right side of nose. All teeth on the right side, upper and lower, felt as though they were all having a toothache at once. Sharp throbbing behind right ear. This lasted until July 29, 2012. Numbness on the right side of my nose/pain in cheek continues to occur periodically.
9. August 28, 2012 – Pinky on right hand with very decreased sensation. When I had EMG done on the August 30th, 2012, I could not feel the needles when they were placed in the flesh below my pinky. I have the “half-asleep” and “pins-and-needles” sensation in my right hand. This has not gone away and now involves the ring finger as well. Nerve Conduction study normal (report attached).
10. August 30, 2012 – Fell down the stairs. The first time I fell down the stairs was in 2006, no injury; sprained my ankle due to falling down the stairs in the October of 2010. It did not occur to me to document individual falls at that point as I thought I was just “clumsy.” On-gong “slipping” on the stairs.
11. September 1, 2012, woke in the night with my entire right side of body (including leg and foot) feeling as though it were asleep, which had never happened before. Now right leg and foot feel “half-asleep” at varying levels all the time as of this writing.
12. September 22, 2012 – Awoke to pronounced ghosting; pressure in left eye. Contacted Neurologist’s office, who recommended I see an Ophthalmologist
13. October 4, 2012 – Saw Ophthalmologist. Was found to have 40% decreased red color saturation; refractive diplopia, and convergence insufficiency. According to report/notes DDx MS; MG, with recommendation for Neurologist to evaluate for Multiple Sclerosis and Myasthenia Gravis and send findings/reports. Follow-up with Ophthalmologist pending due to on-going testing.
14. January 25, 2013 – Woke to BOTH left and right arms feeling as though they were “asleep.” Left arm felt worse than right; pinky and ring fingers of left hand affected as well. Lasted through January 26, 2013.
15. January 25, 2013 – Dizziness to the point of needing to hold onto furniture to get around the house. Lasted through January 26, 2013.
16. January 31, 2013 – Again woke to BOTH left and right arms feeling as though they were “asleep.” As previously described in item 14, pinky and ring fingers numb/tingling. This lasted until February 2, 2013. As of this writing, the left arm is no longer affected.
17. March 1, 2013 until Present – More ghosting/doubling of vision. Left eye tired and achy, no extreme pain; just minor discomfort. When covering right eye, vision double in left. Vision blurry when covering left eye and looking out of right.
Thank you again for reading and any replies/feedback.
Of course since I posted this, I discovered that for items 14 and 16, I should probably note that I was sleeping on my back, not on either side.
I would also like to note that my driving was limited to the daytime, and only the five miles to and from work during the period between the first and second onset of vision problems. DH drove, and continues actually, to drive everywhere else we go.
Thank you to everyone for your patience and feedback. I really want to "get this right" for my upcoming visit to the MS Specialist. Also, I am including a copy of the Ophthalmologist report as well as all MRI scans and the EMG along with this timeline and "Life Impacting" list.
Hi Minnie, I don't have time right now to go through it line by line, but after a quick scan, one thing I would suggest is removing full sentences, keeping the salient points in bullet form and using common abbreviations where possible.
Keep the numbering of each symptom as that organizes it nicely, but remove the extraneous wording so that the key points stand out more quickly at a glance.
13. - Ophtha found 40% decreased red color saturation, refractive diplopia & convergence insufficiency.
- recommended f/u for MS/MG.
Will take a closer look later, just wanted to share my initial impressions/suggestion.
I think you should keep all that you wrote for your personal record but shorten it up for the doc. He can ask questions about anything that grabs him as significant.
I’m going to take a stab at editing your info to give you another idea of how to present it. I’ll use time blocks instead of numbering in hopes of creating a version short enough to entice a doc to stick with it. Remember, every minute he is reading is a minute his attention is away from you.
By the way, you mentioned fatigue as one of the top three symptoms that impact your quality of life yet it doesn’t appear anywhere in your timeline. It would be a good thing to include if you can remember when it became significant.
Hope DV gets back here with more suggestions. She's good at this.
For what it's worth, here's what I came up with.
History of falls down stairs in 2006 and 2010
Awoke with pain in all teeth on right side. Lasted 2 days.
Continues to occur about every 4-6 weeks lasting 1-2 days each time.
First experience of intense stabbing/zapping “zzt” at the base of skull. Presently have on-going zaps and “zzt” sensations that extend down spine and right arm.
Episodes of “Momentary paralysis.” when it felt like someone was squeezing my middle and I couldn’t move. These episodes continue to occur causing a tight pressure sensation in my ribs.
Fell while walking on flat surface. Right leg “gives out.” I stumble when I walk for no apparent reason.
Awoke with blurry vision. Lights appeared double when driving. Neon signs appear doubled/blurry. This has not improved.
Right arm felt very weak, and like I’d hit my “funny bone” when I used it. My right arm continues to have varying degrees of being “asleep” all the time.
While eating supper had sharp pain on right side of face, jaw, and cheek. Inside of mouth tingly. Right eye pressure/pain. Numbness on right side of nose. All teeth aching at once. Sharp throbbing behind right ear. This lasted five days. The numbness on the right side of my nose and the cheek pain continue to occur periodically.
Pinky on right hand had severely decreased sensation. (couldn’t feel insertion of EMG needles). I have a “half-asleep” and “pins-and-needles” sensation in my right hand that hasn’t gone away and now involves the ring finger as well. Nerve Conduction study normal (report attached).
Fall down stairs.
Awoke in the night with my entire right side feeling as though it was asleep. Right leg and foot still feel “half-asleep” continuously but the intensity varies.
Have had pronounced image ghosting and pressure in left eye. Contacted Neurologist’s office. He recommended I see an Ophthalmologist
Saw Ophthalmologist. Report available.
Found to have 40% decreased red color saturation; refractive diplopia, and convergence insufficiency. Requested neurology evaluation for possible MS and/or MG before further follow-up.
Woke to BOTH left and right arms feeling as though they were “asleep.” Left > right; pinky and ring fingers of left hand also involved. Lasted 2 days
Identical incident 5 days later lasted 3 days
Episode of dizziness (needed to hold onto furniture to get around the house) lasted 2 days
Ghosting/doubling of vision worsens. Left eye tired and achy, no extreme pain; just minor discomfort. Vision appears blurry in right eye and double in left.
I’m a very different person now than I was 2 (?) years ago. Back then I was exercising… (highlight a few things that describe your life quality then). Today I am have lost some of my independence. I can’t drive at night… (highlight how your quality of life has changed). Keep this VERY brief. It’s your ‘impact statement’.
I'm definitely going to take out full sentences and get it down to "just the facts" ma'am.
I will have the same thing only with more description in case he asks a question and I can't remember, which is very likely to happen.
I see advantages of a chronological timeline and symptom. By doing a chronological one I discovered a trend that in the last year, I have had new symptom onsets that last approximately 3 months, then I get an easing, with some residual symptoms for about 4 or so months, then it flares up again.
So, would it be a good idea to have two brief abbreviated ones, chronological for time frames and symptom based for grouping symptoms by occurrence?
Also, I don't really have an "onset" of fatigue. I believe that is my longest lasting symptom. Going back, three or four years there are times when I was so exhausted after a work week that I would have to force myself to go anywhere, and I stopped going to my Titans games year before last because the wore me our. I never would have thought I'd miss a home game. We used to even travel to away games.
Would Fall, 2011 be a good marker to use for the fatigue?
Thank you all again,
Have a great weekend, Hugs Minnie
I read your notes before scanning to see who all had replied - DV and TwoPack got it right - the doc won't take the time to read essays. Just the points of what happened and not even how it happened will help to clean this up.
The docotrs are so pressed on time and when we give them written materials or if we come with questions, we need to be as succinct as possible to maximize our time with them.
I managed a physicians office for 13+ years, my suggestion is to keep a copy of how you have it for you, bring it with you. For the Dr write one line (one word) where possible...and space in between. Ex: just pulling dates and symptoms from the air... Not yours just to show you what I mean
Fatigue--- jan 2009 to present
Right sided weakness --- Oct 2008 - Jan 2010
Short and sweet... Just my opinion ... I use to document for ins approvals ect!
In my own experience with my drs I found they prefer I explain as they look at simple facts, that's where your paper comes in... Some will ask for your paper to read later ( so bring 2 copies) others will just refer to short sheet to give them and when reading will remember your explanation . Good luck and keep us posted! Bottom line... Do what your comfortable with :)
~Live as if all your dreams came true~
I sincerely hope I didn't offend anyone by picking a best answer. MedHelp kept sending emails saying that I need to pick one. I just wanted to reiterate that all of your answers and feedback have been helpful and I truly appreciate all of your taking the time to read and write back.
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