lost and desperate

[frustratedmomto3]

Hi, I am 39 years old and live in Hawaii. I have been having nerve problems off and on for over a year now. Up until two weeks ago it was only in my inner thigh and lower abdomen. I was convinced it was somehow gynecologically related in spite of my gyn insisting it wasn't. About 3 months ago things started to get worse. I started going to my GP about it and she just put me on pain meds. She decided to take a wait and see approach I guess. Thats what I get for going to a family clinic instead of a regular doc. about 6 weeks ago the pain in my leg/abdomen was so severe that it sent me to the ER - they diagnosed me with diverticulosis but treated me for diverticulitis since my pain was so bad and they put me on antibiotics. I was on a clear liquid diet, antibiotics and heavy narcotics but things didnt get better. A week later I went back to the ER. They did another CT scan of my abdomen (they figured the leg pain was radiating pain from my abdominal condition) but said things were looking better - they decided to put me on a second antibiotic anyway since I had so much pain. Another week passed and still things were not better (and I was on heavy narcotics). Again I went back. This time the CT scan showed a cyst on my overy. So now they focused on that and said that was where the pain was coming from (despite the fact that the cyst was not there before and the pain was not a different pain). I had an ultrasound about 4 days later through my gyn and the cyst had burst already...pain was still there. I met with my DR several times during all of this who was sure it was coming from my abdomen, and was completely focused on giving me meds for the symptoms rather than finding the real cause.
I ended up again, this time they found that I had a kidney stone (ok...new problem, same pain...)
They something changed. It seemed like overnight they pain that had started in my inner thigh (a definite nerve pain of some sort) had spread to include my entire leg, shooting from the top all the way down to my toes, and the outside of my foot was now numb. I tried to get in to the doc but couldn't get in, so again, I went to the ER. this time the doc came in, talked to me a bit, made me lift my legs, touch my nose, walk, push and pull fingers and toes,etc. and told me what I needed was an MRI, but they couldn't do it at the time so they sent me home on Neurontin. During that visit he told me he felt it could be something like MS. This was the first time anyone had mentioned this and it freaked me out to say the least! I have been trying to get an MRI set up through my doc (getting a referal and pre auth from insurance) since.
The Neurontin helps, along with pain meds, but over the last week my nerve pain has spread to my arm and fingers (all the pain and numbness is on the right side) and I now have numbness on half my knee and tingling in my toes and fingers. I also kept having this strange sensation of numbness/weakness that would spread over my entire arm to where I could barely lift it. It would last about 5 minutes then go away.
Then yesterday I was laying on my bed and suddenly got very weak all over my body. I couldnt get up and I was having a hard time speaking (I felt like I couldn't get my thoughts together and couldn't form my words very well). I also was (still am) dizzy and lightheaded all the time, even when I'm not standing up. My son called 911 and the ambulance to me back to the ER once again. This time they did an MRI but it didn't show anything. They did lots of blood tests and even some they had to send off to an outside lab. I don't have all the results but so far everything has been normal. They did find that I have another UTI (I had one about 2 months ago) but that's it. I was so frustrated by still having no diagnosis that I just layed in the bed sobbing. The doctor came in and talked to me and said she felt that I had many symptoms of MS and that is what they are looking at. She said since the MRI came back negative she is getting me referred to a neurologist and they will have to do a lumbar puncture (?) test. I am stressed about this, but I did get comfort when she looked straight at me and made sure I understood that she does not believe this is "in my head", but is a very real physical problem that will get figured out. I really was starting to feel like thats how the doctors were viewing this.
I feel so in limbo with this stuff and I am so stressed. My sisters husband has MS and I see what he goes through with treatment. I don't want to have to do that! Thanks for letting me vent...

[frustratedmomto3]

Oh, and forgot to mention, after the treatment for the stomach issues the pain is no longer in my abdomen. I obviously had multiple things going on, but now I am left with all the other pain, numbness, tingling, dizziness, etc. This morning I woke up and I felt this feeling wash over my whole right leg, and now it is has that asleep feeling like pins and needles are poking me all over. Frustrating...

[frustratedmomto3]

Thank you for your kind welcome. I'm just feeling so frustrated because nothing is coming up on any of the tests - not that I want them to find something wrong with me but thats just it....there IS something wrong, so if they found it they could fix it....just frustrating. The hardest part right now is just not knowing. Whatever it is, I can deal with it if I just knew what I was dealing with,  ya know? Thanks again.

[wadeheather]

It's hard not to feel lost when your in limbo. But be assured that the ER dr took you very seriously and is trying to get you to a specialist.

Stay here with us, and be strong!  You'll get through this!

[essdipity]

Welcome to our MS forum. We'll do our best to help. No one here can say whether or not you have MS, but we can give you pointers and lots of support.

Abdominal pain such as you describe is not usually associated with MS, yet of course you could well have more than one thing going on. You do need to see a specialist, ideally a neurologist specialzing in MS. MRIs you've had up to now may not have been done in the right areas, using the right strength machine and the right protocol. You also have not been given a real neurological exam, from what you describe.

In other words, you need to start from the beginning with a doctor who will investigate and rule in or out all possible causes of your symptoms.

Meanwhile feel free to come back here often. I also suggest you take a look at our Health Pages (see yellow icon at upper right of page) for lots more information and suggestions.

Hang in there.

ess