No Dx, scared of Symptoms

[Jenner]

I am happy to have found this site. So many good, knowledgeable people here!
I'm 36, a mother of three, a wife, and I work full time. I've struggled for a few years with indescribable fatigue that comes for periods of time....then goes. Three years ago, hip pain began on my right side, starting with an ache and getting to the point where it felt like I had been beaten with a bat. Sooo much pain. Visible limp. Weakness. Then it would disappear after several weeks. Last year I suffered several attacks where I lost my vision and it felt like my eyes were being pulled apart for several minutes. Again, weakness...worried I would pass out...confused. Finally went to pcp...sent me to neuro. Neuro did an MRI...no tumors...some spot he wouldn't explain in plain English but he told me it was nothing to worry about (now reading your stories I wonder). Chalked it up to migraines (I have had regular ones since I was 4, but nothing like this). Been on topamax.

This summer (past two months) the hip thing started again, but now everyday hands and feet partially go numb. I am SLOW...like I am dragging weights everywhere...and so exhausted. My back hurts low...and a constant cramp at the top. Last Wednesday it felt like someone tied off the tops of my arms and legs and filled with something so heavy....ugh it hurt. I had to go down the stairs on my butt. Anyway....you get the idea.
Went back to pcp this week so scared!
Blood tests ok, so was hip xray.

I called to talk to her to find out what we do next, but she wasn't available. I need a game plan, because I am the breadwinner and have the insurance for my family. I have to keep going!!!
Anyway...that is my story....loooong story!!!!

[RoseRme]

Plan of action

Hi...I'm new here like you and not dx'd. I also had something on MRI that they said was migraines. I read here and there tbat dx often happen after dx of optic neuritis. You mention vision issues much like mine. Maybe seeing opthalmologist can be a lead. I have further visikn testing in Oct. Also, at Nother MS site a couple of women td me they were dx'd after a C Spine MRI. That is where their lesions were rather than brain. Hooe these ideas help. - Rose

[KoKo]

Hello Jenner

Went back to pcp this week so scared!
Blood tests ok, so was hip xray.

I called to talk to her to find out what we do next, but she wasn't available. I need a game plan, because I am the breadwinner and have the insurance for my family.

Sorry that you have to deal with so many symptoms, and that you don't know what is causing them. That must be frustrating and scary for you, especially since you have a family to care for.

Can you ask your primary doctor for a referral to a different neuro (second opinion)? You need to have a neuro who will try to figure out what is causing your symptoms.

If you don't pursue a diagnosis, it's likely that your anxiety will probably escalate, which in turn will make you feel even worse than you already do now.

Let us know what you find out from your primary doctor, and what the next step is.

Wishing you the best.

Take care,
KoKo

[kikiblue]

Have you had an MRI of your back and neck? You could have a compressed nerve.

[Jenner]

update

My pcp is sending me to rheumatology for a consult because she thinks it's fibromyalgia. I am no doctor, but after reading up on FM, it doesn't really seem to fit with what I'm experiencing. I know there is overlap between FM and other pain-related diagnoses, though...and I'm not a doctor. I did ask why, when I do have a neuro I see for my migraines (and the strange vision spells I had last year), did she not have me check in with him at all? I specifically mentioned the hands and feet going numb...just seems extremely neurological (and my grandma has FM and never has that happen!). The nurse said she'd check. The pain in my muscles isn't as bad as it was last week, thank goodness. Maybe it is getting better? I still limp and sort of drag my foot a little if I'm not careful, but I try really hard to conceal as much of that as I can when I'm at work, which hurts...and takes a lot of energy. Now, if I could just get my balance a little more predictable, so I don't suddenly sway and look like I had a margarita for lunch....now that would be excellent!
Well...thanks so much for your kind responses and wonderful ideas. Much appreciated...even if I don't end up here with a Dx.
-Jen

[LilyAnn]

Hang in there!!!

Hi Jenner, I'm very new-just been here an hour or so. I just wanted to tell you, "don't give up." I know that the frustration can be overwhelming but we always need to focus on the fact that no one really knows what we are dealing with or cares as much as we do. We care because it is our life that is becoming difficult, because we are the ones suffering. And that is why we need to keep pushing forward until someone helps us. Don't give up. I'm hoping that there will be alot of help available, information, suggestions and I know there will be compassion!
Good luck--you're carrying a big load with three kids and a husband and a body that is fatigued. I just found some info on a couple of supplements for fatigue. I haven't tried them yet because I want to check with my dr. first. I have an appt. next week and will post the info after I see her.
Take care, LilyAnn