Can U Help me????

[LargoKenny]

I’m going to try to make this as short as possible, however I fear it will be quite lengthy. I will try to break it into paragraphs though to help.

My name is Kenny. I live in Florida and I have something seriously wrong with me that seems to be eluding all of the doctors that I have seen. I’m posting this in hopes that someone on here may be able to help me in any way. Its been awhile since I posted here but there are a lot of you that seem to know a thing or two about what I am going through so I am just being hopeful.

It started in December of 2007 with a testicular cyst. In January of 2008 I went to the hospital to get it looked at and was prescribed antibiotics to fix it. Shortly after I started to wet the bed at night. By March/April of 2008 I was having accidents during the day. By July/August I was wearing a diaper all the time because I could no longer control my urine.

In July/August of 2008 I started to have a tingly sensation in my left hand. Over the next two months it gradually got worse and more frequent. It moved into my left foot in august of 2008. By the middle of September 2008 I was losing feeling in my left hand and lower leg and foot as well as feeling tired and weak. I went to the hospital and was evaluated with a bunch of tests. The tests showed something was wrong but they could not figure out what. I was discharged from there and sent to the USF in Tampa, FL.

At the USF they did a work up for MS and told me that they could not diagnose at that time. I was prescribed Provigil for the tiredness/weakness and told to come back in 6 months.

By the end of November, beginning of December I was feeling better. I stopped taking the pills and thought “ Awesome it went away”. By January/Febuary 2009 I felt like I was in great shape. Work was going great and life was back to normal.

In March 2009 I was at work getting ready for my day when I got a sharp pain in my chest. The pain quickly spread through the whole body and I went into a non-epeleptic seizure. I was rushed to the hospital and ran through the ringer of tests again. I started to feel out of breath all the time. My muscles would lock up for no reason and walking became a problem.

The Breathing problems lasted for a few months before going away. The muscle tenseness and locking stayed and never went away. The tingling and loss of feeling was back and stronger than ever. I was seen by many doctors and got the same outcome. This time I was prescribed Lyrica for the pain my muscles were causing and Flexeril to help with the tensing.

In December 2009 I started to get muscle spasms in my left hand, arm, leg, foot, and back. They upped the Fexeril dosage and it seemed to help a little.

Two weeks ago the spasms really started to get bad. I was put on medical leave at work because I can no longer drive as the muscle spasms were happening every minute or so. Now I am at the point were my left side is spasming every 20-30 seconds. It is very annoying and I need help.

If anyone has any idea what is going on with my body please let me know. I am open to any and all suggestions as the doctors seem to be out of suggestions and I really have no place to turn at this point.

Thank you for anything
Kenny

[Quixotic1]

And, please never, ever worry about long posts.  We have some real doozies here!

Q

[Quixotic1]

Hi, and another welcome to our forum.  What an ordeal!  Your symptoms do sound very much like MS, but without know all of the testing, and knowing what the abnormalities are no one here can say much.

As you told us the sequence of events I wondered about a couple of other neurologic disorders:

One is Normal Pressure Hydrocephalus - you are very young for this, but it is an illness that starts out often with severe urinary problems, weakness in the legs, and cognitive problems.  

A second thought is Arnold-Chiari Malformation or Cauda Equina Syndrome.

You don't fit any of these perfectly (you fit MS the best), but they are conditions frequently missed by neurologists and I am just throwing them out for you to consider asking your neuro about.

We have had 2 people go to the Mayo Clinic in /florida to see a Dr. Shuster.  She is apparently very smart, so that is a possibility also.

Can you tell us what tests were abnormal?

Hang in there.

Quix

[Lulu54]

Hi Kenny, welcome back.  I'm so sorry your symptoms are also and no answers are easily found.  Hang in there - you and your doctors know something is wrong, it is just a matter of what!

I wish I could give you answers, but I am still at a loss as to why your docs can't find the cause.

be well, Lulu

[LargoKenny]

Im sorry if i was not clear I tired to be. No I was not diagnosed with MS. My grandmother died in 2000 of MS and my sister died in 2007 of MS, so it runs in my family. That is why they are looking at MS as a possibility. I went through the MRI, the Spinal Tap, EEG, EKG, you name it I have been put through it and tested for it. My doctors are all stumped and so am I. They have told me that the tests show something is wrong, but they have no idea what is causing it. The things that stand out to them are: Loss of bladder control since July/August 2007, ON in my right eye, and the fact that the nerves in my left side seem to be going 3 times the normal speed. MRI and Spinal Tap show no signs of MS though.

[Heather8]

Wish you could delete posts on here because I have no idea why I wrote that.

Okay well to me it sounds like symptoms of MS. It took going blind for doctors to diagnose me. I have some of the same symptoms. I can no longer drive because of spasms. I also have a weird chest sensation that feels like it's hard to breathe but I am breathing alright .
I had a pulmonary test done and the guy who did the tests said everything looked alright but about 2 weeks later I get a call from my doctor and they tell me something showed up but they don't know what it could be and they just left it at that ,
What tests did they do ?

[Heather8]

Are you diagnosed with multiple sclerosis or do you think that is what is wrong with you ?

[LargoKenny]

I also forgot to mention that I was diagnose with ON in my right eye and I'm sure there are other things I forgot to put in there. It has been a rough 2 years and I can not remember all that has happened.