Scared again...Please help

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Scared again...Please help

Postby mr_miagi on August 27th, 2012, 11:03 am

Hello,

I have been reading these forums for awhile and they have been extremely helpful in alleviating my fear. I have had several ups and downs over he last few months to say the least.
It all started about 9 months ago...

Let me start with a little history for the last few years. I started to feel run down and as I was in my mid 30's and pretty active and healthy I did not feel something was right but my general checkups were all OK. Went to the doctor a few times for excessive eye twitching but nothing found and it went away eventually, later to the doctor for strange chest sensations and stomach issues but nothing found, just said it could be potentially IBS and GERD so they gave me protonix to take which helped for a while but was never sure it really helped. Went in once for a back issue and about a year later I had a weird cold feeling in my legs and feet which they related back to my back issues and said probably a pinched nerve but MRI showed no nerve compression, only mild degenerative disc disease typical for my age. went to physical therapy for a couple months and eventually went away. I forgot to mention that I was taking Lipitor for a few years for mildly elevated cholesterol. I did not really want to take it but went to 2 doctors who were pretty convincing that it was the right thing to do to prevent future heart issues and most of my family does have high cholesterol so I started to take the medication.

I was travelling for work and had a weird sort of weak feeling in my right thigh. I started to google about weakness and lipitor as I had heard someone comment on it recently and started to freak out about all of the posts I found about neuropathy and nerve damage as a result of lipitor and did know that if you felt any sort of muscle pain that you should quit immediately and consult your doctor. I decided at that point to no longer take it anymore. I started to feel odd in the next few days as I waited for my doctor appointment. Told the doc my odd leg sensations story and that I wanted to stop the lipitor. He said it was a good idea to stop and consult him and he tested my CPK levels to see if there was any muscle issues but he did not think it sounded like it was related(i also asked if it was OK to just stop cold turkey or if I needed to taper it off gradually and he said just stopping is fine with lipitor). My CPK levels came back OK but I told him I would like to try to stop the lipitor all together and he said I could try. At this point I started to develop extreme fatigue and these weird cold sensations in my feet legs and hands. If I would cover up in a blanket or crank the heater in my car it would go away though. I eventually got over the extreme fatigue which lasted a couple of weeks but the coldness remained and would start to get other sensory symptoms like some burning and stinging in my hands or feet(at this point the anxiety really kicked in as I thought I was sure to have some disabling neuropathy). Lots of numbness and tingling in various places but mostly in hands and feet still but some days would feel OK. Then I started to get some tingling in the face and some stabbing/stinging sensations in various places. Not super painful but a pretty sharp pain far a couple of seconds but would then go away. At this point my doc sent me to a neurologist as he said potentially MS but highly doubted it. Neurologist did the standard clinical exam which was OK and sent me in for a BAER and VEP test and brain MRI. All clean except the VEP was slightly abnormal and he did not know exactly what that meant since everything else was OK. Symptoms persisted but would come and go so we did further MRI studies. I had a lumbar and thoracic spine, and a 2nd brain and a optic nerve study done. All came back clean. He basically sent me away as he did not feel I had anything sinister with the clean MRI's and did not feel I needed a EMG done. Somewhere in the middle of all of this I started to develop the twitching and vibrating sensations all over my body but they have never been too severe. There was a while when I had quite a few throughout the day but now I have just a few here and there but the sensory symptoms are getting to me. Some of my other symptoms are:

-limbs fall asleep extremely easily, especially at night
-sitting in a hard chair causes my feet to feel cold or kind of start to hurt so I attributed it to pinching the nerves or cutting off circulation but this never happened before - even sitting in a car
for a couple of hours would cause my butt to go numb
-perceived weakness in hands and arms but could do pull ups, pushups, grip tests OK
-at one point I developed what seemed to be carpal tunnel symptoms with alot of hand numbness especially at night and I would wake up with numb arms and my wrists would be all curled up - I
wore some wrist splints at night a few times and it seemed to clear up
-funny sensitivity to temperatures at times
-now my biggest symptom that started a few days ago is my feet kind of hurt sometimes and I feel as if my socks are bunched up under the ball of my foot and it is really freaking me out as I have a terrible fear of neuropathy and scared it will progress. I am also getting more of the sharp stabbing pains in my feet/hands lately too.

Hopefully I explained my symptoms ok as my mind is all over the place so my writing may not be the best. I am sure I forgot to mention several items but you can ask questions and I will post anything that I remember. Now for my questions.

1 - What do you guys think about my symptoms in general? I feel I am a bit different as the twitching did not start right away and the hand/feet sensory symptoms are my predominant symptoms.
2 - Have others had the neuropathy type of symptoms especially the sock bunching feeling(like a tenderness in the balls of your feet)? I am terrified by this at the moment since I have had mostly strange feelings in my hands/feet and I have not had a EMG study done. Did they go away and after how long?
3 - Could the lipitor have caused this? It was very coincidental that it really took off shortly after I stopped taking it. My doctors tell me they do not think the lipitor had anything to do with it.
4 - Is this BFS or something else? I have read that you can still have MS but a clean MRI, is that true? My biggest fear currently is neuropathy, especially that it is a progressive/disabling form. I worry so much that it will get worse and I will not be able to take care of my family and they will have to find some way to support themselves and take care of me. Have any of you been diagnosed with neuropathy and if so how are yo doing today?

Thanks for any advise to can give me!

God bless all of you.
mr_miagi
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Re: Scared again...Please help

Postby colls22 on August 27th, 2012, 12:33 pm

Hi there,

Welcome :)

First off, I don't know anything about Lipitor, so as to whether or not it is responsible for any of your symptoms, I really can't say.

All of the sensory symptoms you describe are very much like BFS, and nothing like anything nasty. Perceived weakness isn't weakness, so it's really not even worth discussing.

As far as the EMG goes, the clinical exam is just as vital, if not more, than it. I think that much of the time, the neurologist perform the EMG simply to put the patient's mind at ease, as I've now had several tell me that they know after doing their clinical exam whether or not there is anything amiss.

I really don't think it matters a whole lot as to exactly when your twitching began. I think you've got BFS. And a healthy dose of anxiety. There could be other (not scary!) smaller things going on as well, particularly to do with the medication, but I really wouldn't worry about any of them.

Hope I've helped a bit!
colls22
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Re: Scared again...Please help

Postby mr_miagi on August 27th, 2012, 1:55 pm

Hi colls22,

Thank you for your reassuring words. I think that is something that I really need right now as my anxiety level is pretty high. My anxiety was crazy when this all started and has calmed down a great deal to where I thought I was doing pretty good and my symptoms were very mild for a while there. Then these odd feet sensations came on recently and my mind started to mess with me again as I started to think I was starting to develop some type of disabling neuropathy that will only get worse form here. This is such a difficult endeavor as my anxiousness is tied to these symptoms so when something flares up I feel like I am in this vicious cycle and can't stop.

Thanks again.
:D
mr_miagi
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Re: Scared again...Please help

Postby colls22 on August 27th, 2012, 3:36 pm

I hear you, Miagi. I'm the same way. Just when you think you have things under control, something new happens and you start the whole cycle over again.

Remember this, SENSATIONS aren't worrisome. It's when you don't feel anything but suddenly cannot do something that may (and I do emphasize may) indicate an issue, and merit a follow up with the doctor.

Just know that you aren't alone. And although you may be saying to yourself "I'm the exception to everyone on this forum, something really IS wrong", realize that we've all said (or are saying) those exact words.
colls22
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Re: Scared again...Please help

Postby Floydian on September 3rd, 2012, 2:25 am

Hi Miagi, I also am a new member and recognize a part of your symptoms. I am not a doctor but I think sensory issues is just a good thing. It means the nerves are getting respons from your brain. I had a clear brain MRI and my neuro said it, definitily, could not be MS or Parkinson as those two present itself on a brain MRI. Try to ease your mind, enjoy your family, go outside walking or cycling and beware of Dr. Google :wink:
Floydian
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Re: Scared again...Please help

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