[redfox]

Hello all, I am new to this site and would really like to ask if my symptoms fit for MS....can you help?

For over 15 months I have been experiencing pain in my right upper arm and right upper leg, pain right abdomen, right rib cage,pain right jaw, pain right collar bone and shoulder blade, fatigue fatigue fatigue, right kidney pain, headaches on the right side of my head, diziness and occasional nausea.

The pain is made much worse by my period, limited alcohol consumption and any kind of exercise (never had problems with these things before).

I have had xrays on limbs, bone scan and brain mri, abdominal ultrasound all normal. Blood tests have been fairly normal except low vitamin D and low ESR of <1, positive speckled anti nuclear antibody test and a nodule on my left thyroid that is 3mm in size.

My Dr who is a Nephrologist wants to do a spinal mri and said he is looking for lesions. I am so tired and frustrated its making me cry, I have seen three specialists (a general physician, rhumatologist and the nephrologist)

I have two children, an 8 year old and 2 year old and they need me to be well and active. PLEASE HELP

[SallyC]

It doesn't necessarily sound like MS to me, but I don't have chronic pain with my MS. Just tingling, numbness, spasticity, weakness, achyness and fatigue.

Please let us know what your spinal MRI shows. Good wishes..

[karilann]

Its the not knowing what is going on that is the worst. Let the docs rule out as much as they can. A spine MRI sounds like a good next move. If that comes out clean, then you just have to wait for new or worsening symptom to show up and then report them to your doc. Its about all you can do. At some point in time, something will appear that will get you a diagnosis of some kind!
The hardest part right now is not driving yourself nuts with the "what ifs"
It took me 12 years for my MS diagnosis and I swore it had to be something else! Ask for meds that can help relieve some of your symptoms and ....unfortunately.....wait it out. I'm hoping you get the answers you need very soon.

[NurseNancy]

hello and welcome to NT,

karilann had some great advice.
it doesn't especially sound like MS to me either. you can always see a neurologist also to get a neurological opinion.

i hope you get answers to your problems and hope you will feel better.

[ginnie]

I am glad you found Neuro talk. You will find alot of help and information here. There are alot of caring and compassionate people. I want to welcome you. There is an MS Forum. I hope you do not have this. Not knowing what is wrong is the hardest thing to deal with sometimes. My cousin has MS. I hope you will continue to ask questions and go for all the tests that can make a determination, or diaganosis for you. There will be people who can help answer some of your questions too. Take care, and again welcome to neruo talk. ginnie

[MClive]

Hi redfox,

I'm sorry you are going through this. That amount of pain must make it really hard to not have a diagnosis. Not knowing is always hard and I'm sure the pain makes it worse. You've found a great place for support though. All the forums here are very helpful and people really care.

Have you seen a neurologist? I don't think a nephrologist is your best bet for diagnosing something like this (though depending on your symptoms he may still have an important role in your overall care). A rhumatologist was a great idea, but if it doesn't seem to be a rheumatic issue, I wouldn't hesitate to get a neurologist involved. They will be able to help you figure out if this pain is an issue with your nerves, an autoimmune issue, some sort of neuropathy, MS, or something else. I'm not a doctor, but your symptoms wouldn't have made me think MS. It's worth ruling out though. A spinal MRI is always a good idea when you have major neurological symptoms and no explanation. If nothing else, it will rule things out. I'd definitely do it if I were you. Also, if you continue without answers, you may want to repeat that brain MRI in 3 to 6 months. Given that your symptoms are all on the right, it is possible that you have brain our spinal involvement that isn't showing up yet on an MRI. Have you had any EMGs?? Those can test nerve conduction between head and muscles, between spine and muscles, and even between muscles and nerves. That is something a neurologist will probably want to test for you.

Try to get a referral to a good neurologist. It will really help you to find one who is patient, up for solving a mystery, and someone who listens to you. If a diagnosis doesn't happen soon, get a referral to a pain specialist who can help manage your symptoms in the interim ....actually, a pain specialist may have ideas about a diagnosis if that is your only or primary symptom.

Best of luck and keep us updated on how things are going for you!

Mandy

[ginnie]

I re-read the posts today. One person mentioned EMG tests. I would get every other test you can besides that one for your diagnosis. The EMG is a ruff one to go through, and I would not submit to it. I was able to get the help I needed with others tests that didn't hurt so much. I would question the giver of the test and his or her experience with it before I did the proceedure. Alot has to do the capability of the technician. I am a chicken. I make no apologies for that. I am also a difficult patient sometimes. Just get all the information you can. I wish you all the best in your search for answers. ginnie

[MClive]

There are several types of EMG tests. I had three in the hospital that did not involve needles at all, just electrodes. They all test for different conduction issues. I wouldn't be too worried. If the doctor thinks you need the test with needles, then it is probably best to do it, as it will show you if there is a problem between nerve and muscle. Best of luck in seeking a diagnosis. I know the waiting can be extremely stressful. Keep us updated on how things are going.

Mandy