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Author Topic: AT MY WITS END ABOUT MS, PLEASE HELP!  (Read 480 times)

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Offline utahguy058

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AT MY WITS END ABOUT MS, PLEASE HELP!
« on: December 03, 2013, 07:04:02 PM »
I am at my wits end. I don't know if I can handle this! I don't know where to start with this message, but I greatly appreciate you reading it and giving me advice or insight. I can't even fathom what is causing what. All I can come up with is that this is MS. Let me start at the beginning.

Three months ago I went and hiked a peak in Idaho and the next morning I woke up with a numb foot. Everyone told me not to worry about it and that it was just a sports injury. A week later I ended up in an emergency room because I had numbness up the right side of my body. I didn't know about MS at the time, but the doctors did an MRI of my brain and found nothing at all wrong with my brain. They told me to follow up with a neurologists because it could be MS. They sent me to a neurologist a few days later. I was a wreck. He checked all my reflexes and such and looked at my MRI and told me that nothing looked out of the ordinary and to just give it time and rest and should clear up. After a day or two from the Emergency room the symptoms started to wax and wane. I would get finger numbness or tingling and foot numbness, tingling, or burning. I also had pain in my back and neck as well and headaches and weird things going on in my head. I would have sensitive scalp, twitching eyes, burning eyelids, temple pressure, tingling throat or numbness. I would get burning in my shoulders and radiating pain down my legs and arms. I would get burning in my feet, and numbness in my feet. Sometimes symptoms would change. I was so scared that I had to have MS I went to a Ophthalmologist to check for Optic Neuritis, and he said he didn't think I had that. Then I went to a different Neurologist who ordered a cervical MRI to check for lesions. Again nothing showed on the cervical MRI. I started to mellow out a little then my calf started twitching and I started to panic and symptoms flared up the next day after twitching started. I have began to get random twitches all over body but very concentrated in calves and feet. I have symptoms on both sides. I can get burning in my buttocks and low back and down leg, or numbness. I can then get burning feet when walking, or when trying to sleep. Symptoms may last a few days here and there. I went to another neurologist who didn't touch me at all but just said that it is probably anxiety. No way is anxiety causing 3 straight months of non stop neurological issues. 3 months! I wasn't anxious when my foot first went numb. After that I started worrying about things, but I am not in a constant state of panic. I still work, yes I spend a lot of time thinking about it, but I am not in complete anxiety. Recently I have started to jerk as I am falling asleep and feel like vibrations inside me while I am trying to sleep. I read this is a symptom of MS. I just know this has to be MS, what else on earth could all of this be? It makes no sense at all. I'm at my wits end. I don't have insurance til January so can't just keep seeing doctors. Any advice, please help!

If you read all this I can't thank you enough, I just would deeply appreciate any insight as to what could be going on.
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Offline Jette

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #1 on: December 03, 2013, 08:16:19 PM »
MS works against the body in a very specific way.
What you are describing....moving pains, different pains, things that stop and start.....this is not how MS manifests.
With the first symptom, your foot, the ER docs suggested it and they were right to do so because they were exploring all possibilities. Now, your symptoms are completely different and varying. Set your mind at ease that what you're experiencing, is NOT MS.

Read what you're writing.... "I started to mellow out a little then my calf started twitching and I started to panic and symptoms flared up the next day after twitching started." You are feeding your own fears.

Something to think about.
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Offline greend

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #2 on: December 03, 2013, 09:13:20 PM »
Utahguy, your symptoms don't sound like MS to me.  You've been to doctors in the past and what was their view?  I know how frustrating this can be, as I've suffered from neurological symptoms with no diagnosis.  Try to relax and deal with your anxiety.  I know this can be difficult, but so important for any kind of peace.

Feel well and let us know how everything is going.
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Offline utahguy058

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #3 on: December 04, 2013, 12:13:51 AM »
Hey Jette and Greend for your replies. The caring and love from total strangers amazes me. Can I ask a few questions from both of you, and also answer a question for you?

First off I have been told by the neurologists that they don't think that I have MS based on my two MRI's of cervical and brain MRI. They used contrast on both and found no lesions. They did the basic neuro tests and I passed them all as normal. But I still can't shake that there is a 5 percent chance that you could of MS with a normal MRI. I just can't fathom what else it could be?

Hey Jette, how do you know about MS? I am just curious if you have any experience with MS or knowledge? I am just wondering. Thanks for any respone, and Greend I was wondering what neuro symptoms you dealt with that went undiagnosed and do you still have them?

Thanks to all who responded and anymore who would kindly add some insight.
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Offline skim50

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #4 on: December 04, 2013, 01:01:19 AM »
Would you consider yourself a out doors person at all?
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Offline utahguy058

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #5 on: December 04, 2013, 01:11:27 AM »
I'm active and outdoors almost all the time. However I live in Utah and we don't have a known issue with Lyme's disease, but I guess that I could look into it.
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Offline skim50

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #6 on: December 04, 2013, 01:22:26 AM »
There are many neurological issues associated with Lyme.. Lyme can be successfully treated with antibiotics, as well.. I honestly don't thnk  you have MS.. It was most likely a pinched nerve that caused numbness in your foot. The fact that it came and went says something.. In MS your foot would stay numb for weeks, and not let up. Also, numbness doesn't spread to different parts of your body with MS.. And muscle twitching, according to my neurologist are not a early sign of MS, and comes many years after a diagnosis. Muscle twitches are very much associated with anxiety and electrolyte deficiencies. I have had all your symptoms, and the doctors have ran countless tests.. Checking everything from lyme, vitamin b12 deficiency, diabetes, heavy metal poisoning, to lupus, and everything has come back negative.. Once everything has come back negative, I was able to finally relax, and all my symptoms have gone away.. I to had numbness, buzzing, burning, joint pain, muscle pain, visual fog, muscle twitches, weakness, off balance feelings, etc.. The fact your tests came back normal is also very telling.. You're  most likely dealing with anxiety, and I know right now it seems like thats impossible because your symptoms are very real, but speaking from someone who has had MS anxiety, I can tell you, it is amazing what your mind can do. My neuro also said you brain can create symptoms..
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Offline utahguy058

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #7 on: December 04, 2013, 01:37:21 AM »
Thanks so much for your response Skim. I will ask MY ID doctor if she knows anything about Lyme and if it is worth getting tested. Also I was wondering how long you dealt with neruological issues. Would they only come on for a minute, or last for a long time? Any insight would be grateful. Thanks again!
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Offline skim50

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #8 on: December 04, 2013, 01:43:48 AM »
I dealt with it from the end of august till about a few weeks ago.. During the height of my anxiety I had all the symptoms coming and going through out the day.. The symptoms never stopped me from working 45 hours a week, or hiking, or any of my exercise. My numbness was not really numbness, just a loss of sensation really that would get better when I stood up and walked around.. Buzzing would only happen for a few minutes, same with numbness.. Neuro said that MS symptoms does not work like that.. Flair ups cause constant symptoms to last for weeks. And they are much more severe. Neuro said that anxiety and stress deplete vitamin reserves, and throws off your bodies PH.. Which can cause neurological like symptoms..
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Offline greend

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #9 on: December 04, 2013, 08:18:54 AM »
Utahguy, my symptoms are a prickly feeling in the skin of both my legs and a surging feeling through my chest, almost like adrenaline. It makes my legs sensitive to clothing touching them and drives me nuts.  It started 9 years ago after. During one day, I both, hurt my back and had a very bad flu.  The sensations have come and gone 3 times.  The first and second bout lasted 4 months with long periods of being totally normal in between.  This last bout has lasted 3 long years and I still have them.  I've seen 3 neurologists and had MRI's on my brain and whole spine, nerve tests, blood work, Lyme disease test and the list goes on.  Everything comes back normal except a herniation was detected in my lower back.  My doctor thought maybe it was stressed related, so I tried a couple of different anti depressants, to no avail.  He's back to thinking it must be my lower back, as the symptoms move around, but are always on my legs.  Maddening for sure. 

Your neurologist doesn't think you have MS and it really sounds like you don't.  Did they give you any other ideas? 
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Offline japheree

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #10 on: December 04, 2013, 10:53:20 AM »
but I am not in complete anxiety

Not consciously perhaps but one thing I have learned from anxiety is that once it gets bad enough it can hit you long after the cognitive anxiety has worn off. Your body is kinda stuck like it after a big scare (and believe me it sounds like you had a big scare).

I know it is hard and this is going to be a case of do as I say not as I do because so far my HA has trumped doctors reassurances several times for a number of illnesses but trust your doctors. You are actually rather fortunate right now, you are in a small minority of people who know that they do not have M.S because you have had a specialist look at you. From where I am standing you have less chance of currently having M.S than I do (last tested around 18 months ago).

The symptoms are, well, *****! I know that but try to put them to the back of your mind and get on with your life. They may have a real physiological cause or they may not but let the doctors worry about that. At least it sounds like you are the active sort, nothing like good exercise to make you feel better!
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Offline kj94702

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #11 on: December 04, 2013, 02:02:27 PM »
I am like you. I recently had an MRI of my brain that was found to be clear. I felt great for the first week after hearing the results but I am now beginning to question whether I need an MRI of my spine as well. Without it, I just can't feel assured that I do not have MS.

Your situation is unique however. You have had multiple neurological exams, a brain MRI and a cervical spine MRI. You are worried about the "5% of MS cases" that have clean MRIs. I have read this statistic in my desperate searches of the Internet as well. The problem with it is: (1) it is from a very old study using older MRI technology that was more likely to miss lesions; (2) it is provided without any consideration of the time frame (you need to keep in mind that the figure is for people presenting with clinically isolated syndrome.....the percentage drops dramatically as time goes on....in other words, there are almost no cases of clean MRIs three years after symptoms develop).

I suppose there is a chance that you could have an incredibly atypical MS presentation that has eluded multiple neurologist exams and escaped detection on a contemporary MRI machine. You need to realize, however, that this is true of probably less than 1% of MS cases (or about 350 people in the US). You are a male so there are approximately 100 men in the US who could find themselves in this situation. This gives you less than a .00005% chance of having MS and more than a 99.99% chance of not having it. You should focus on the vanishingly low chance that you have MS and not on the idea that you will be the unfortunate 1 in a million case. It is, of course, easier said than done but you have done everything you needed to in order to be cleared.

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Offline utahguy058

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #12 on: December 04, 2013, 03:03:11 PM »
You make a valid point. KJ. Thank you so much. HA is so weird, that we think... Well I could be one of 100 people, instead of saying. I could be one of the millions of people that don't have MS. I am so grateful for all the comfort everyone has brought me. I ended up in the ER last night because of severe panic that set in. They just did basic blood tests, but checked for diabetes and Thyroid issues. Everything came back normal and healthy. So I guess it has to be neurologically related somehow. But I guess I should let the MS fear pass. There really is not a great chance. Thanks again! Anymore stories that anyone has I would love to hear. KJ, what kind of symptoms did you have?
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Offline 2Bogey

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #13 on: December 12, 2013, 11:56:17 AM »
I have a story.  My symptoms began 12 1/2 years ago.  The symptoms are sensory in nature, such as numbness, burning, pins and needles, etc., in many different body parts.  In the span of 10 years, I have had 4 neurology consultations and 3 MRI's (of brain and neck).  The neurologists ruled out MS, but cannot explain the symptoms.  But even after all of this, I still cannot get past the MS because every other explanation has also been ruled out (thyroid issues, vitamin B12 deficiency, mercury testing, etc).  You see, if MS had a clear cut test, then I would be assured. MRIs can be clear cut if no lesions are found, but sometimes when they are found, it still may not mean it is MS, so it remains uncertain.  My 3rd MRI did show 3 tiny white spots on my brain, which both the radiologist and the neurologist felt were insignificant.  Apparently, it is not unusual to find these spots in 'normal' brain scans.   They can be caused by migraines or high blood pressure or simply from the aging process.  The last neurologist said that after 10 years of symptoms, the MRI and the neuro exams have nothing to show for it, therefore he ruled out MS and any other neurological disease.

Two years after that consultation, my symptoms kicked up again.  Usually they last for 1-2 months, but right now it has been 8 months and still going strong.  I did not go to the doctor this time.  I am trying to live with it.  But I am tormented about it.  I keep trying to remind myself of what the neurologists told me.  I keep trying to remind myself that if it was MS, surely something more significant would have happened by now.  But I keep thinking about those brain spots and it doesn't help that my coworker was recently diagnosed with MS and I have many of the same symptoms as her! 

I would love to connect with someone on this site who has endured symptoms for years and has undergone multiple MRIs, only to have MS ruled out again and again. Anyone else like me out there!

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Offline greend

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Re: AT MY WITS END ABOUT MS, PLEASE HELP!
« Reply #14 on: December 12, 2013, 12:40:45 PM »
2Bogey, I can relate.  I've had prickly sensations in both of my legs (skin) for the past 3 years.  The sensation kind of moves around my legs.  Sometimes I get a burning sensation on my skin, and that can be anywhere.  I also get a surging feeling in my chest sometimes, like an adrenaline rush.  It all began 9 years ago after a very bad flu and while working out.  The symptoms have gone away 2 times, but this time it has come back and will not go.

I was tested extensively.  MRI's, blood work, nerve tests etc.. and everything was normal except I do have a herniation in my lower back.  The neurologist didn't think it was big enough to cause these symptoms, although my doctor isn't so sure.  At one point my doctor thought it could be anxiety, but I don't think he is totally convinced.

The neurologist said I don't have MS, tested for Lyme disease and don't have that...He told me lupus doesn't present that way and on and on.....  I am beyond frustrated..

Hope you feel well soon and know you aren't alone. :fragend005:
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