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Lost in Limbo, new poster not sure what is happening to me.

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Old 08-30-2010, 10:27 AM   #1
Join Date: Aug 2010
Location: oregon
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shineoflight HB User
Lost in Limbo, new poster not sure what is happening to me.

Hi, I wanted to come here and post my story. I dont have any sort of dx yet, and living in limbo land of what could be wrong with me. My last mri was a few years ago, nothing showed up on head or spine, had a nerve conduction test a few years ago that came up ok. Now I dont have insurance so Im unsure of what to do as everyday is becoming harder and harder to move and be active and the stress is eating away at me. Here is how my story began.

About 5 years ago I got Bell's Palsy, lasted about two months. Then i noticed when I would exercise I would get tiny muscle spasms in my buttock area going all the way down my legs. Next symptom was my right toe by my pinky started twitching uncontrollably all the time. I started getting muscle cramps, and nerve pain in my right foot. Over time it gradually started to get worse in my right leg. I then started to get feelings like someone cracked an egg over my head with facial spasms and headaches with pain in my left eye. The stuff that was happening my right leg now travelled over to my left. When i woudl walk, I would get weird sensations in my feet. My feet and legs spasms consistently and i get buzzing, electrical sensations and tingling/numbness. This gradually has moved up my legs. I now have a left pinky finger that twitches all the time and i get spasms all over my body but still consistently all day in my feet. My muscles cramp up super easy, even in my stomach, I can make myself get charlie horses all the time. ok so fast forward to now. My legs feel super heavy, my feet are getting worse and i cannot flex my toes on my right foot upward. Im getting consistent facial spasms, sensations even in my throat and lips. . My anal area now feels numb and I have had trouble retaining bowel movement. Not complete loss of control. and my area by my groin feels numb. I was exercising yesterday and felt heavy buzzing in my lower back then got a charlie horse in my left buttock muscle. I am also getting shooting nerve pains. My eye lids feel heavy, Anyway this is my story. If anyone can help great. It seems to be getting worse and worse with no help in sight. I am losing my mobility and it scares me. I have no insurance until Dec 1 and that is if i can keep working. So for now I feel so helpless. I know so many have gone through what I am going through and Its just good to know I'm not alone. I have three small kids, one who is autistic and they need their mama.

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Old 08-30-2010, 01:51 PM   #2
Join Date: Sep 2007
Location: Arizona, USA
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Re: Lost in Limbo, new poster not sure what is happening to me.

Welcome. You MRI is quite old. You will need a new one. If you have lesions or have had lesions, there should be indications by using an MRI with and without contrast.

The MS Association provides funding for MRI's if it has been longer than 2 years since your last MRI.

If many of your problems present during or following exercise, you may need to "back off". Keep a journal of your symptoms. What were you doing before they presented, what had you eaten, what was the weather/temperature.....details can help.

If you suspect MS, you need a neurologist who deals with MS. Do you have MS? It is too hard to know. There are over 400 diseases which present with MS like symptoms.

Stay strong and take the best care of your health as you can.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Old 08-30-2010, 02:08 PM   #3
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Re: Lost in Limbo, new poster not sure what is happening to me.

Hi and welcome to the boards. Im sorry you are having such a tough time of it right now, and its wonderful that there is light at the end of the tunnel with insurance issues....

As Jayhawk said, there is help available. You might want to contact the local chapter of your MS society to talk to them about getting help with an MRI and possibly even a physician to give you a neurologic exam. What you describe is NOT screaming MS by any means....but you cant rule it out. Every one of us presented differently, MS is a snowflake disease, with none of us having the same symtoms or issues. A good MS specialist will not only diagnose MS but will also rule it out and help you seek another specialist.

Blood work seems like a good thing to have done at this time. Are their any health fairs in your area which do free screenings? Sometimes deficiencies, especially in B levels, can cause some of the problems you describe.
Also Jayhawk mentioned a jounral of your symptoms. Start keeping one, its an excellent idea! Note if certain foods, after exercise, even heat- or the change of weather from hot to cold- trigger your symtoms...and also note if you are sleeping 8 hours a night, or only 5, and if that makes a difference.
Look for things which might set off your feeling lousy and make a note of it.

If there is anything else we can help you with, feel free to vent and ask questions here!
RRMS- dx 05

Old 09-02-2010, 04:14 AM   #4
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: Lost in Limbo, new poster not sure what is happening to me.

I to have had some of your symptoms, and am still yet to be diagnosed. The others have given you some good advice here, you first step really should be getting referral to see a neurologist or an MS specialist, like the others said there are many diseases which can mimic MS, and a neurologist will work with you to rule these out and also take you through the steps to look for MS also.

Have you ever looked at the possibility of lymes disease? This again can have very similar symptoms to MS, and should also be something your neurologist can investigate further.

Good luck to you, I hope you manage to find a decent neurologist that can help you find the answers you need very soon.

Best wishes


Old 09-02-2010, 06:02 PM   #5
Join Date: Aug 2010
Location: Kentucky
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tubajim HB Usertubajim HB User
Re: Lost in Limbo, new poster not sure what is happening to me.

Good evening - sorry for your troubles.

Please DO consider the advice of the good folks here - many different points of view - as well as approaches to something you may or may not have. Some really paitient people will actually relate to your constant questioning, wondering - worrying - WHAT TO DO! I read in your post that you are having increasing troubles, and limited options until your Insurance kicks in - dont now about MS Society and MRI coverage - but if you saw it here it would be well worth tracking it down.

I hear you most concerned with how to GET to December. I sure would like to know, too. But a much to do - can you find ANY opportunity to be deliberately quiet? If so, grab any opportunity to conserve yourself - sounds like you get exercise if you want it or not. Avoid delving into MS so much if you can. It can be consuming and make it harder to get through 99,98,97... Limit your MS time and exploration - like a Mom has lots of time... but there is good advice on this board - MS or not! Dont assume you will be a long term member - but there are some experienced people in here. Not me - very new. Their advice would be good to consider - how they manage symptoms for example. Even if you dont have MS you might find some good hints.

I wish you the very best -



Old 12-28-2010, 06:01 PM   #6
Join Date: Dec 2010
Location: Coos Bay, Oregon, USA
Posts: 7
WhiteBuffalo HB User
Re: Lost in Limbo, new poster not sure what is happening to me.

Hi. I am from Oregon too. And I have had the same symptoms as you (different in some ways of course). And mine went on for a long time and changed and kaleidoscoped into other things. I also had severe ON in left eye as well as a little in right and lots of other things. My Bells palsy was activated more by sunlight and when I went into sun suddenly it was like a stabbing pain in my face that radiated.

I think what people do for all this is try one thing after another. But doctors do have their certain advice. Unfortunately I got none. I also could not tell if my eye was open or not but others thought my eye looked normal. My eye itself also felt numb. I also noticed I could not look in mirror and close th eye I wanted to apply eye makeup. I was quite a mess and ended up in worst of circumstances financially. Nobody cared cause they couldn't see what I felt. Yes and it does feel like you had a strok too.

Mine got better and here are some off the wall things I did: use electric massager on area; use ice pack or heating pack on area; you know i can't remember all i did. memory is a tricky thing with this.

It must be some kind of virus or bug that gets all around in the nerves. I could almost imagine them during the attack. I started researching and came up with lyme disease; MS; and all the usual. And then you get on here and see all kinds of people had same problem. That is somewhat comforting. I cannot really say any medication helped as doctors ignored me as if I were a liar. It was a dental assistant who diagnosed me several times. Then I looked itup and realized he was right. Dear, it was horrible and an "invisible symptom". I went thru hell and now here I am. I like Oregon, I think the climate here is better for these kinds of weird problems. I got gradually better and so gave up on diagnosis as doctors upset me. I hope you do too.

Old 12-28-2010, 06:50 PM   #7
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: Lost in Limbo, new poster not sure what is happening to me.

Hi bcb1200, and everyone!

I have had every one of the symptoms mentioned on this thread, and I too after a long limbo land journey was diagnosed with Lyme and bartonella in November. I also had 3 Lyme tests prior to this which were all negative, though after much research I knew I had Lyme, regardless of my continuous run of negative test results. I sought out an LLMD and sent my tests from the UK to IGINEX, and I am so glad I did.

It's great to hear you are doing so well on your treatment, I know for many it can take years, so its very encouraging to hear of your progress. I have only been on treatment for just 6 weeks, so very early days for me. May I ask what treatment you were prescribed and was it IV or oral abx?

For all those still in limbo, I would thoroughly recommend going to see an LLMD, and getting tested at IGINEX which is the best lab in the world. Lyme has to be considered a strong possibility with symptoms like these.

Please do not go to your regular doctor, they know nothing about Lyme, or how to diagnose and treat it.

Best wishes to you all, may we all have better health for 2011

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