Undiagnosed

[deborajk]

After several years (yes, years) of odd symptoms and health issues, my husband forced me to a doctor this past fall. My symptoms: EXTREME fatique, overall weakness, memory issues, hand tremors, balance issues, dizziness, pain in my legs, especially at night and although I didn't realize it reduced feeling in my legs and arms. After many blood tests, neuropathy tests (ouch), MRI, echocardiogram..... and visits to neurologists, rheumatologist, gastric doctors no one wants to make a definitive diagnosis.
My primary doctor feels strongly that it is MS but neurologist isn't ready to make that diagnosis yet. My MRI results were as follows:

RESULT:
Mild nonspecific white matter changes are appreciated with several foci
of white matter T2/FLAIR hyperintensity in the frontal lobes

I have been cleared of lupus and a host of other diseases, but my symptoms have worsened and have a few more. My doctor took me off work and is encouraging me to apply for disability since my company doesn't offer it. I just want someone to tell me what I have and treat me for it!

By the way my B6, B12 and D are very low and have been taking supplements but nothing makes me feel better. The neurologist ordered a lumbar MRI but just found out today that the insurance company will not approve.

What do I do now!

[22cyclist]

Hi and welcome to MS World!

You need to get your B6, B12, and Vit D levels into a mid level range before you decide that you need a diagnosis. This could be your problem right by itself. Even a little bit low of these levels can cause many many symptoms. And you have all three!

Secondly, your MRI doesn't suggest MS. If it did, it would say consistent with multiple sclerosis. MS has a certain size and shape to their lesions. Non-specific lesions are just that. They can be caused by tons of things, generally not MS.

Third, you don't need a lumbar MRI if you are looking for MS as the cord ends at the bottom of the Thoracic Cord. If there is anything to see in the Lumbar spine, it can be seen with a Thoracic spinal cord MRI. Unless they are looking for slipped discs, damage, etc, not related to MS.

So for now you should spend your time taking your vitamins and trying to get those in order, then see how you are feeling. Hopefully much better. If not, then you and your neurologist will go from there.

Let us know how it goes, OK?

Take care,
Lisa

[lavenderteawithme_33]

Hi...

Very sorry you had to go through this. I'm in limbo aswell
and also had some low vit. levels. You may want to ask your PC DR. for a Rx strength for you vitamins. To get you caught up to at least good range. I'm not a Dr. but know there are at least shots for vitamin B12 and pill form of vitamin D that are at Rx. strength .


I learned a lot from what 22cyclist wrote you about the MRI RESULTS.
We are lucky to have smart people here at this site.

I hope you get to continue to get more answers and keep us posted.
Believe me.....i understand ..been there...going through some same things too. I will be thinking about you. Keep in touch.

[puglover]

If I were you I would talk to your doctor about the vitamin levels. I know 3 people and myself who have vit d deficency and they said that they were tired, dizzy, achy and just felt awful. After about a month on the supplement they felt much better. You have to get the vitamind from a pharmacy becaue it is a very high dose. My friends and I take 50,000 units a week.
The vitamin B has to be given by shot because many people with the deficency cant digest the vitamin in there gut and that is why you become deficent. I am not a medical professional and this information is from my personal experience.
Call your doctor today and have put you on the vitamins and this might just be the problem and you will feel much better. Good Luck