Hi, you'll definitely get some responses here. I am a retired physician who hangs out here to try to help. I have MS. I just woke up (before you sprain an eyebrow, to my defense, I'm on the Left Coast and severe fatigue is my major problem) I'm a Type C personality (Comatose)
First: Nothing, let me repeat that, NOTHING about what you have written speaks of a "stress reaction", though if you aren't stressed BY what you are going through you may no be human.
Second: Nothing that you mention even remotely suggests ALS. There is little to NO snesory disturbance in ALS, so the numb stuff almost rules it out. Also fasciculations occur as a very late phenomenon in ALS and only after significant weakness and visible atrophy (wasting) of the muscles. Also the twitching occurs incrementally in the muscles begiinning with the first ones affected. Typically, tho not always, the weakness begins distally in the hands and feet and muscle wasting there shows up early and outlines the tendons and is generally pretty obvious.
So ALS should drop WAY, WAY (way) down on your list of worries. I hope this alone is worth my answer.
Fascicualtions that occur all over is far more typical of a virall infection, thos not that much of the rest of you story suggests that. Fasciculation occur when the muscles are istrubed for a wide variety of reasons: overuse, using them again after a prolonged period of inactivity, viral inflammation (like the muscle aches of the first day of a cold or the flu), neurologic problems (you sort fit here) and there is a disorder called Benign Fasciculation Syndrome that does not indicate deep disease, but can drive you bonkers. (official mental heath term)
Okay, I'm not sure I can be as reassuring for the rest of it. I can't diagnose anything online and you're no different. The repeated episodes certainly do suggest MS or something like it. The repeated normal MRI makes MS less like and EXTREMELY hard to diagnose, few doctors will. But the literature repeatedly points out theat some, maybe as many as 5% of people with later confirmed MS will have a noraml MRI. They usually don't get a diagnosis until the MRI shows "something."
If nothing shows you should get another MRI of the brain and entire spine (including the thoracic) in another 2 to 3 months, IMO. The Lyme test should be repeated making sure they have done a Western Blot and it is sent to a good lab specializing in running the test, like Igenex in California. The lab will send your doc a kit for it.
The vertigo can be better evaluated using a test by a vertigo expert called a VENG, VideoElectroNystagmoGram. This will help determine if the vertigo is being caused out in the inner ear (peripheral to the central nervous system and thus, not MS) or if it has a central cause, usually in the brain stem (and thus pointing toward MS). Vertigo is a common symptom in MS and many other neuro and autoimmune diseases. You should seek a second opinion for the vertigo. It is a rare ENT that is really equipped and knowledgable able the problem. They think they are, but, as a physician who was first disable by vertigo, before the MS, I have found otherwise. Go the the VEDA Vestibular Disorders of Amercia website, vestular.org and look for their list of specialists in your region.
Other tests that could be of value in your workup would include Evoked Potentials, visual, auditory and somatosensory. These are additional tests that, when positive, point toward MS, but do not diagnose it.
The diffuse pain is less typical of MS. Your doc might want to run a muscle enzyme test on your blood called creatine kinase (CK or CPK).
Did you have a really detailed and timeconsuming neuro exam? If not you need one. Were there any abnormalities on your exam like hyperactive reflexes, a +Babinski (Great toe moved upward when he rubbed the bottom of your foot with a sharp object), or + Romberg (fall over when you close you eyes and try to stand still). Have you had a jerking of the eyes? If you had some of these signs and the doctors were initially very concerned about MS then a spinal tap might be a good next choice. If it was positive, they would keep MS much, much higher in their concerns and monitor you frequently.
Many people who start out negative with the MRI take much longer to get a diagnosis. But, You need a neuro with an open mind and one who is very aware that the MRI is the "BE ALL of diagnosing MS.
Well, I just woke up and need to do some stuff. I hope I have given some clarity to your situation, and believe me, you will hear from others.
Welcome. Quix, MD
Thank you so much! I was beginig to feel invisible. I'll try to answer a few of your questions. FYI I am a speech therapist and know just enought to be dangerous
1. Babinski- big toe went down
2. I had a CPK normal
I did have a low normal sarcole
3. Funny thing about the lyme... I was bit by a tick in late july/ august. The little bugger is in a zip lock bag three hole punched in my chart at the PCP office. He left a red area.. not a bulls eye that lasted a week or more. I appreciate the specific lyme's test to ask for. i get the feeling the rheumatologist will be more willing to pursue more testing with regards to lyme. Neuro couldn't answer my questions about the blood test and said I needed to ask infectious disease.
1. ENT was friend of mine so he was a good listener. He r/o out any deteriation of the muscles in the ears.Hearing normal, tymp normal he is going to another test involving goggles and a laser and hot/cold air? He wants to rule out any vestibular involvement. With that said he had me close my eyes and put out my arms and no I did not fall. He asked me to close my eyes, put out my arms and march in place 30 seconds. When I opened my eys i was way over on the left side of the room. A little terrified not being in the place I started. He said I am drifting to the left could be vestibular or left sided weakness. I will look at the VENG. I will tell he is the only on that despite MRI he says possible MS.
Okay my neuor exam.. he poked me with pens and checked my babinski. No strength testing (ENT and PCP did look at that) and he has NEVER watched me walk. He is doing my EMG on Friday.
5. The visual stuff is intresting. Acuity good but vertigo is triggered visually and not with head position. Visually over whelmed. I like lights off and brightness low on the computer.
Typing is dreadful and this thing where my legs just seem to be on the same page. Also thirsty all the time glucose was 104 middle of the day non fasting.
You have helpped me tremendously.
With MS is ther one side of the body affected more than others?
Hello Geek and welcome to the forum. A portion of your situation sounds like mine. At the beginning of my problems I had the exact same situation with my hands above my head. They went completely numb as soon as I lifted them over my head to fix my hair, no feeling whatsoever. This last during my beginning 'episode' and now has passed and does not occur.
I also had the muscle twitches/spasms all over my body during that time, and have again for several episodes. Then it will just stop completely until the next episode. The originally found my potassium was low, and I (and they, I believe) blamed the spasms on that.
My potassium is not low during this episode.
My legs are very weak and become fatigued with any type of effort. Stairs are impossible, one flight and I am completely winded and the legs feel like I am dragging concrete.
I have a good number of other symptoms and my situation is a little strange, but I wanted to mention that I had some of the same symptoms.
I am listed as what you might call 'probable'? Two doctors have stated they believe I have MS, and my neuro does not agree.
I have type 1 diabetes also. Oh, I should add that my doc. has diagnosed me with chronic Ebv and I have been on meds for that for over a year.
Sorry to hear you are suffering. We know just how you feel. Great to have you with us,
J Fizz
Thanks for your thoughts. Sorry to hear about the spasms in your butt! I have to laugh because when I say i have fasiculations in every inch of my body... let's just say I can relate.
Question.. was intial onset sudden for everyone? I have been tired for awhile..but all this neuro stuff came on so suddenly it seems one thing right after another. All 4 limbs . I also have this thing with my arms and legs getting slightly red with white spots/blotches sound at all familiar?
Speechgeek
Hi and Welcome! My episode started EXTREMELY similar to yours except that I had not been bit by a tick.
Mine started in May of 2007 with an episode of palpitations in a very hot room, a calf deep "charlie horse" that lasted 4 days and then the twitches and everything else started. I have had numerous tests and have been told by a neuro at the Mayo clinic it is "probably post viral syndrome". But since they did not do a Lumbar Puncture and really have no evidence that this is definitely what it is, plus it waxes and wanes, I am just waiting for one of two things to happen. Either I get worse or I get better and hopefully it will be the latter and I will never have to find out what a LP headache feels like.
Nice to meet you and I hope you get some answers soon!
Kristin
I hate the "stress" card.
I feel that "stress" is the first place doctors go when you are female. SO I have taken some of their "happy" drugs and I am still symptomatic. I love it when they are poking you with pins and they ask " So how IS your marriage? and your job? How about your children?"
In response to floridamom2....they never did a LP 3 years a go to investigate the virual menegitis so that is why my PCP thinks we need to treat the episode 3 years ago as something different.
Thanks everyone so much.
speechgeek
I am in 100% agreement with Quix about NOT POSSIBLE this is ALS. It doesn't even fit the symptoms and mostly affects men.
I DO think you have SOMETHING Neurologic going on, but what it is, I can't say.
Yes, it does sound like symptoms of MS, but with some many disorders that mimic MS, no wonder it's so hard for the doctor to diagnose when the testing comes back normal.
I know how hard it is to wait for answers. I really do believe that sometimes no one comes up with the answers to describe what is happening to us. One of our posters, who I will not name to protect her, has been going through limbo land so long, that it seems she totally doubts herself. She has given up. And you know what, I totally understand why she feels like that.
You can only be told somany times, that nothing can be found wrong, before you start doubting yourself and thinking you are nuts. I was dx with MS 13 years ago, (I am now 54) but I can remember way back in my twenties having some of the symptoms I have now. Oh how those anti-depressants and anti-anxiety pills were pushed on me. Pleadings from the doctor's to get myself to a therapist for mental health counseling.
I understand your exasperation in not having answers. This seems to be a very difficult part of life to "hang in with," when you just know that something is wrong with your body. I wish I could wave a magic wand over you and poof you would have your answers.
Big Hugs though,
Heather
I hope you can find some answers SpeechG. Mine was sudden onset - during/after a very rough pregnancy.
Jazzy
Yeah, that stress card is bull sh**
Hey, I have a rash like that on my arms and legs and it looks like this:
http://www.rheuma-online.de/abbildungen/Livedo-reticularis.jpg
I haven't had a doctor diagnose it, but that is definitely what it looks like. It seems to change from day to day. I think it can be "normal" for some women, but can also be associated with APS/Hughes Syndrome. I was tested for it since it can mimic MS, but it all came back normal.
Anyway, welcome to our forum! (I am also new here) Let me know if your rash looks like that too!
Stacey
mine is not as red or splotches as big bur very close
Thanks
I was recently diagnosed with ms based on lesions detected in an mri and a very minimal neuro exam. Now I am reading about all of the other illnesses that can mimic ms, and I am having trouble finding out which ones may show brain lesions? I keep reading that ms cannot be diagnosed based solely on the above factors, so why have my doctors come so quicky to that conclusion? I am hesitant to bring it up because of how dificult and impatient doctors are with 'self diagosing" patients. I was already "escortred" out of an ER by security after shouting at a doctor who refused to ackowledge anything was wrong with me, and was very condecending. This was before my ms diagnosis. I am sure he was thinking "stress" eh? Well, anyhow any info anyone has on a demyelenating disease with ms like syptoms would help. My syptoms are mostly sensory, phantom pain, numbness, itching, burning, tingleing, tightness, pretty much all over, with extreme fatigue, dizziness, not vertigo, but lightheadedness, major insomnia, and some weakness, stiffness, and twitching. It has been about five weeks, and is progressively worse, with a few good days. Its onset was preceded by a very bad cold/cough lasting five-six weeks. I am also pregnant, and breastfeeding also, with the onset of syptoms being at about 18 weeks gestation. These factors may have easily weakend me making me suseptible to disease. Although my blood was drawn, and I was told results for elevated wbc count, as well as lyme were normal, I still feel my diagnosis was a bit sketchy, and I want to be sure. Any help is appriciated, thank you, and good luck to everyone.
Kelsey
Are you new to the forum? If so welcome. You have come to a wonderful place. Please post your info as your own post so lots of people will respond. There's a green box at the top of the forum page that says post a question. Click that and Give as much detail as you can.
There are so many people in limbo land so you have come to the right place. Since I posted this original message I was put on an antibiotic trial and I have responded well. So they are now looking at lymes disease for me. You should know that both my lymes screenings came back normal (ELISE and Western blot). The lymes screening test have a high false negative. I am going to pursue testing throught the Igenex lab in CA. I was lucky to have pulled a tick off me and have a red mark never a bulls eye for over a week June 07. However it still took until 3 weeks ago for my doctor to take a leap of faith.
The key is finding a good doctor either PCP or neurologist. Again put up your own post others will come
Rebeccah
kelsey.
sounds like your story is a lot like mine. here goes
went to pc with back ache pulled muscle
or so they say iit was all in my head just so happens went to dr on call one day with chest pain and numbess in my left hand
sent me to get mri
i had textbook case according to my nero
im sort of stable now was dx in96
had to stop my shots bec of cancer of larnyx just found out june of 2007
already been through rad and chemo so now i have 2 things to fight
still dont walk very much alone to scared to i never go to wal mart without riding
a electric chair never thought i would but got tired of setting home hopefully i can start my shots again soon