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Old 11-09-2011, 10:26 AM   #1
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I don't know what this is, any help would be great

OK so I don't know where to turn for help and this has happened to me before in 2006. Recurring usually means something is going on so now that this has been bad, gotten much better and now has gotten bad again means I need help.

A few things to note I had laser eye surgery Thursday Nov 3rd to seal a tear in my left retina (tiny whole). The next day I got a headache that continued to grow in intensity Friday and Saturday afternoon I ended up in the ER due to major head pressure, couldn't see straight. CT scan showed some swelling in the left back side of my head (so the doctor said) and she asked if I hit my head, I told her no and it was dismissed for some reason.

Symptoms are:
  • left neck weakness
  • left swallowing difficulty
  • left side hyoid bone popping when swallowing
  • left shoulder and arm weakness
  • left should and arm burning
  • left side of head tight and throbbing
  • left head splitting headache
  • left side lower back of head (behind left ear but lower part of head) pain and tenderness to the touch
  • left weaker formarm, wrist and hand
  • left jaw weakness, feels like its hanging off at times and other times not
  • right jaw cracks about 8-10 times a day due to weakness on the left side
  • left eye pain
  • left side of face feels hot, sun burned feeling but its not
  • left side of face feeling tight and lots of pressure
  • left side face had so much pressure last night it seemed to have a muscle spasm and my muscles on the left side of my head started twitching uncontrollably
  • it feels like their is a cut down the middle of my head and I can feel the left side of my head more than the right, very uncomfortable feeling
  • Feels like everything on the left side of my body has just been weakened and it seems like it happened over night
  • extreme neck pressure pain radiating down my back where the bottom of my neck meets the rest of my spine
  • left hand feels colder and is colder to the touch
  • left pain right below should blade towards the center of my back
  • large amount of floaters in my eyes over the past few years
  • recurring infections
  • a little dizzy during the day
  • bad pain in my back and neck when the day is done (from pressure of sitting upright it feels like)
  • head pressure while standing or sitting upright

It looks like a laundry list of things but this same thing happened to me early in Jan 2006. I went looking for help to a Neurologist, infectious disease doctor, Endocrinologist, Ears/Nose/Throat, Allergist, ER doctors. None came up with anything except to throw drugs at me. There is something systemic here that only occurs on my left side. When it happens twice I think there is obviously a major issue that I need to address but I have no doctor that is willing to help me figure out the problem. Is this Auto-immune?

I am from East Lyme Connecticut so the Lyme Disease doctor tested me for Lyme, turned out I had tested positive for a co-infection (a tick borne disease that usually comes along with Lyme called Ehrlichiosis) but not very positive for Lyme (western blot some bands positive but not enough for CDC positive). I was treated for Lyme and during the time period most of my symptoms disappeared (2 years of treatment) but that could have been coincidence. Some issues go away on their own with auto-immune so I am not convinced.
Right now this burning in my left arm, shoulder weakness and burning, neck pain and weakness, jaw weakness is really F'ing with me. The only thing that helps is Vicodin and I don't want to be on opiates for the rest of my life (3 days is enough).

Another thing to note I had just gotten off of Leviquin (7 day round) to get over a throat/sinus infection about 1 week earlier before eye laser. I just want you to have all the facts to see if someone out there can help.

Does anyone know of a doctor in LA that is willing to help me get to the bottom of what is wrong with me? I really can't go through this all over again, my job and my life will suffer again and I can't afford it.

Thanks so much.

 
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Old 11-09-2011, 05:54 PM   #2
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Re: I don't know what this is, any help would be great

Believe it or not, there is one thing that comes to mind that can explain almost all of your symptoms...herniated disks in your neck affecting the left side nerves and spinal cord(wouldn't cause floaters in your eyes).

Has anyone bothered to do an MRI of your cervical spine?

It is very easy to herniate disks in your neck and often happens unknown to the you with age. If they affect the nerves of the left side, it can cause all sorts of weird symptoms from the top of your scalp down to your shoulders and arms and even fingertips. If it also hits the spinal cord, that causes symptoms all the way down to your toes, with muscle dysfunction, burning pain and weakness, numbness...all sorts of weird problems.

I know where of I speak because I had no idea I had a neck problem until I was shoveling snow and felt my entire body go numb. An MRI revealed 5 herniated disks that had compressed the nerves to my arms, primarily on the left side, to the point where I had no pain but lots of numbness and weakness. And since the nerves up at the top were also compressed, I had major headaches and all sorts of weird nerve problems to my face and neck. And my spinal cord had been compressed down to half thickness but my symptoms were stiff leg muscles and numb toes.

On top of that, it causes the spinal fluid to not flow properly around the cord and up into the brain and so you get fluid backed up and massive headaches.

Not unusual that the docs might not think of this as most have no idea how a blocked spine affects you.

So if you haven't had it done, get an MRI of your neck and see what's going on inside. I had it for years before anyone did an MRI.

Jenny

 
Old 11-09-2011, 08:32 PM   #3
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Re: I don't know what this is, any help would be great

Notknowing:
I feel that you have a big possibility of Lyme It can be chronic. You might have had relief for a few years but it can come back. Also blood work is not that accurate. So the fact that you tested positive for a co-infectioin tells me you have it. Also you can check into what Jenny said about the neck problems. That is easy enough. But i feel it is lyme related. I hope you get answers. Keep us posted please. LaLa

 
Old 11-10-2011, 10:53 AM   #4
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Re: I don't know what this is, any help would be great

I am tending to agree with Jenny. An autoimmune disease usually is bilateral in that because it is systemic, both sides of your body are affected, rather than just one. Same goes for infectious diseases. Good luck and let us know how you are doing.

 
Old 11-10-2011, 10:55 AM   #5
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Re: I don't know what this is, any help would be great

Hi Jenny,

I would think the floaters are cause by increase pressure in my head causing increase pressure on my optic nerves but I am no doctor. I have had MRI's done in the past but nothing showed up, not sure if they MRI'ed my neck though. I wish I can just go get an MRI like that but to convince anyone to do anything for me is a nightmare. I was on 3 vikodin last night to just decrease the pressure headache I had and I don't have much Vikodin left which sucks. I also don't want to be on drugs like this for very long. I am only 36 and it already started happening when I was 31. It could be a disc, I will ask about this when and if I get an MRI.

Thanks for your input Jenny

 
Old 11-10-2011, 03:50 PM   #6
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Re: I don't know what this is, any help would be great

I am hoping it is Lyme so at least there is a strong treatment for it and some hope. Thanks LaLa

 
Old 11-13-2011, 11:05 AM   #7
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Re: I don't know what this is, any help would be great

Got MRI on Friday, results came back normal. The Neurologist said I had some small signs of sinus disease but that's it (or whatever that means). Blood tests all cam back normal including sed rates and all test for vitamins/minerals in my blood.

Saw LLMD yesterday and she prescribed me some oral antibiotics, nystatin and some other supplements to take.

Thanks for your input.

Last edited by moderator2; 11-13-2011 at 03:17 PM. Reason: posted disallowed website - please see the posting rules

 
Old 11-13-2011, 12:05 PM   #8
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Re: I don't know what this is, any help would be great

Notknowing:

At least you no know that it is not a disk issue. i really feel it is lyme. Let us know how you do on the antibiotics. Which antibiotic did the dr give you. Also you said that you are mostly on another site but you did not spell it out. I guess we are not allowed. Can you send me a private message letting me know. Is that site any better then this one? Thanks and i hope you are feeling better soon. I have not gotten resolve on my situation. I probably should try an antibiotic also but I don't want to take it if i don't have lyme. Talk soon. LaLa

 
Old 11-13-2011, 12:07 PM   #9
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Re: I don't know what this is, any help would be great

Notknowing:

At least you no know that it is not a disk issue. i really feel it is lyme. Let us know how you do on the antibiotics. Which antibiotic did the dr give you. i hope you are feeling better soon. I have not gotten resolve on my situation. I probably should try an antibiotic also but I don't want to take it if i don't have lyme. Talk soon. LaLa

Last edited by moderator2; 11-13-2011 at 03:16 PM.

 
Old 12-09-2011, 12:18 PM   #10
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Re: I don't know what this is, any help would be great

Haven't had an MRI of my spine or neck yet. That is probably the next step to find out what is going on. Seeing UCLA neuro on Monday so hopefully I can get to the bottom of this ASAP.

 
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