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Old 10-05-2007, 01:44 PM   #1
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Here is my story - what do you think?

I thought I would post my story and see if anyone here could be of help with suggestions for the next course of action. I have another neuro appt in a few weeks. The Neuro I am seeing is supposed to be very familiar with MS as this was my PCP's first thought when I went to see him in march of this year.

Fell down the stairs I have no idea how it happened ...all of a sudden I was at the bottom of the stairs and in pain! (May not be related but I thought I would mention).

Severe vertigo which was nearly constant and no movement required to set it off. Settled down to mild vertigo occassionally. Brain fog with the vertigo which seems to have settled down as well.

Fatigue was unbelievable for the first 3 or 4 months but has gotten better. Have felt like my whole body is vibrating. This lasts for a short time and I have not experienced this in a couple of months.

Brain zaps(not on meds when this started) and the sensation of numbness on the right side of my face and right forearm which comes and goes. Feels like novocaine wearing off. (Still have on a daily basis some zaps are mild some are severve and very uncomfortable. Sometimes it feels like my eyes are zooming back and forth or going in circles.)

Electric shock sensation from my head down to my toes. (Only happened a couple of times over the last 7 months). I have balance problems on and off but it is really not that bad most of the time. People have commented that I sway sometimes.

Muscles/nerves jumping... facial, hip, knee, back, legs..now I have muscle spasms..charley horse in my right thigh muscle..or sometimes muscle bubbles??? I can actually see the right calf muscle bubble up and move. The soles of both feet tingle frequently.

I have also been struggling with some memory blips....like LOL just the other day I was helping my dd with home work and said lets get to the right channel.....instead of page.. I have been also finding myself struggling with names....names of people I work with on a daily basis...the name will come to me eventually but I find it weird....I'm 39 and I think it is a little early for this type of memory blip.

I have had the sensation of a shiver (like your hair standing up on end feeling) radiate out from my spine. It has recently wrapped around to my right chest area. As it was going away almost felt like pins and needles in the chest area but not on my spine or back. Same sensation has started at the back of my head and travels down into my neck in waves.

Most recently my right big toe has gone completely numb for about 24 hours twice now. The nerve/muscles jumping/spasms have started on the left leg as well. A couple of fingers on both hands have decided join in the fun by twitching for 15 seconds or so several times a day. I have experienced the shiver sensation just in my leg today and now 2 more toes on the right foot feel like there is something wrapped around them and there is nothing there.

Last but not least...earlier this week had a really bad brain zap that seemed to trigger a muscle spasm in both eyes that screwed up my vision for about 5 to 10 seconds.

I have also had a burning sensation between several toes on my left foot but have had this on and off for many years. I have always associated this with the nerve damage due to a MVA years ago.

Ruled out migraine, inner ear disorder, menegiers (sp), thyroid. All blood tests normal, CT normal, MRI mostly unremarkable, some crowding of the foramen magmum no herniation, 24 hr heart monitor rare PVC (normal), ENG/VNG nystagmus upbeat and bilateral vestibular dysfunction (probably from long hx of classic migraines), eye exam normal even though I occasionally have some blurry vision. Hx of CMT in the family.

Sorry for the long post and thank you for taking the time to read it! :-)
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~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

Last edited by lynxgal; 10-05-2007 at 01:45 PM.

 
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Old 10-05-2007, 02:10 PM   #2
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Re: Here is my story - what do you think?

I would say (non-medical disclaimer inserted here )that it would be MS. I can identify with much of what you wrote. I have never fallen down stairs before, but before I got my mobility dog, I found myself falling quite a lot.

Keep track of your symptoms, etc. in a journal (it helps with memory and combats brain zaps!) as it will help your neuro in ascertaining your condition. If it is MS, then it will help your doctor determine what type of MS you have.

Your story was nicely written and very informative.

Last edited by MSJayhawk; 10-05-2007 at 02:11 PM. Reason: typo

 
Old 10-05-2007, 06:12 PM   #3
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Re: Here is my story - what do you think?

Hi MSJayhawk,

Thank you re: my story...that was a cut & pasted from my "symptom resume' that I will be reading to the neuro at the end of the month. I'm not sure my fall down the stairs is related....but...when looking back I kind of wondered so I put it in.

Talking about dogs...mine is only a house dog....but for the last 7 months she has definately been more attentive to my situation. When I am really bad she will come down the stairs one step at a time with me.

I have been keeping a very detailed journal...hoping this will be helpful because when this all started my neuro thought it was stress and depression. My PCP says absolutely not...there is something going on. The neuro only saw me once at the beginning when the only thing I had going on was vertigo, tingling and brain fog. A lot has develped in the last 6 months.

Thanks again for your reply.
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dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 10-05-2007, 06:26 PM   #4
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Re: Here is my story - what do you think?

You are welcome. I would probably link your stair fall to MS or neurological problem.

My service dog "knows" when I am doing bad. He is able to signal me prior to a seizure. If your dog is picking-up clues, you might look at getting him set-up as a service dog. I know that in Canada you have to go through a formal training process. Here in the US, ADA allows us to train our own Service Animal. At the very least, it looks like God has blessed you with a 4 legged angel.

 
Old 10-05-2007, 06:32 PM   #5
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Re: Here is my story - what do you think?

LOL that she is....but she is also getting up there in age. Not too sure this old girl will want to learn new tricks when she will out right refuse to do the old ones! LOL
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dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 10-06-2007, 01:35 AM   #6
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Re: Here is my story - what do you think?

This story is remarkably like mine, all the symptoms are similar... i havent been diagnoised with MS im still in limbo.
God it makes me think..
Good luck with the neuro, and please let us know how you get on.

 
Old 10-06-2007, 06:24 AM   #7
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Re: Here is my story - what do you think?

Hi Janito,

Thank you for the reply. I was reading your old posts and noticed you posted something about shadows.....I had forgotten about this I have experienced that as well earlier on in all this...nothing recently. I have been chatting with another person on the brain and nerves symptoms board who as almost identical symptoms to me. She is in England. She and I were diagnosed with "migraines" and medicated for it several months ago. The meds did not help me so I came off of them and PCP said not migraines wait for follow up with neuro. I don't think her meds are working for her either.

I am not convinced this is MS but I can't rule it out yet. One other symptom I have experienced that I forgot to mention is the cold water feeling on my arm and toes. I was convinced back then that it was some sort sensory seizure. My EEG was normal. Now I am trying to avoid zoning in on any one thing. That is hard to do when you have all this weird stuff going on every day!

I will keep you posted. :-)
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dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 10-08-2007, 02:22 AM   #8
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Re: Here is my story - what do you think?

Good stuff Lynxgal,

Im convinced i have ms and the more i read here the more convinced im getting.. scary but true... Ive not suffered with headaches much at all really i get more like pressure and light sensitivity type headach in and behind my left eye. Those cold water feelings i suffer from all the time, generally its on my face below my right eye but i get them on my legs and the back of my neck also.

I too start zoning in on one thing and think "gosh whats this now", but im trying to relax a bit and just go with it, whatever it is, it isnt life threatning, im actually beginning to feel "what is normal!" i feel a sensation and think is that normal , am i trying to feel myself too much ... crazy.lol, im off the scale altogether.. lol i ask all my freinds do you get such and such " they think ive lost it too.. lol

Well good luck doll and keep us all posted..xx

 
Old 10-08-2007, 06:35 AM   #9
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Re: Here is my story - what do you think?

Once you know what it is (no matter what that turns out to be), just having a NAME for it will, honestly, give you such a sense of relief and you won't be putting youself down as a "Klutz" or whatever.

PS: Maybe your old dog is just bored with the old tricks and she'll welcome the new ones?? Afterall, dogs are people, too!

 
Old 10-08-2007, 07:51 AM   #10
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Re: Here is my story - what do you think?

Janito the sensation of numbness goes into my right eye and ear sometimes. I don't like it when it travels into my eye. It makes it feel bulgy? But looks just fine.

Lisa P-I agree the not knowing is the hardest. You are right dogs are people too! Maybe she is bored.
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~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
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