Thanks for the responses ! sally and keepingfaith
I had a blood workup in march and everything seemed within the set tolerances... will need to find the report however to know what they tested for. I remember Vita D was ok, thyroid and liver were ok

I've taken b12 supplements although in the powdery form, along with Vitamin D supplements, along with a lot of others.. on and off however.

Like everybody I guess, my cognitive processing of the symptoms probably make them worse than otherwise. I'm going to wait a few months before contacting the PCP, unless I have noticeable progression.


With luck our posts will live on as search engine hits while we move on in our lives and our symptoms go away!

MRI results
 

Hi...so I got my latest MRI results but I need some help interpretting them

since the nurse was less than knowledgable. First MRI was August of 2012 w

an w/o contrast and showed nothing. Last MRI was 1/21/13 and showed a

couple areas of white matter which the nurse kept saying was common in

people with migraines. I never have migraines. I also have a capillary

telangiectasia. She said for that it was usually harmless. I asked her what

the doctor wanted to do and she said he just wants to check my brain again

months from now. I really couldn't get anything else out of her. Prior to

getting the MRI done the doctor had said he would want to do an LP. There

was no mention of that when they called me for the results. I am very

worried as I have been for 1.5 years since my symptoms started. I'm just

looking for someone to help me understand this and why they don't seem to

be worried about them. Should I get a second opinion? My life is going

downhill so fast. I have progressively worsening symptoms in my legs and

feet involving tingling, burning, and numbness. More recently weakness in my

ankles. I also have shooting pains in my elbow and feet sometimes. I had

burning tongue for like 2 weeks that has gone away now thankfully. I also

have spells of vertigo that last a few days and bouts of blurry vision that

lasts weeks at a time. Thanks for reading and any advice you are willing to offer!

Hi KF, I would deffinately get another opinion, if that is all this Doc has to say. Don't you have an appt. to discuss the results with this Doc, or is he finished with you now?:rolleyes:

:hug:

As far as I know he is finished with me. I only spoke to the nurse and she didn't ask me to make an appointment for follow up. They seemed to not be concerned about the findings. But I am. Mainly because I have so many horrible symptoms and find it difficult each day to go on. And for the fact that this MRI showed something when the first showed nothing.

Hi Tara,

I'm sorry you have been having these problems. It sounds to me like you need to ask the neuro for a MRI of your spine. I'm almost certain (and people here can correct me if I'm wrong) that you could have no lesions on your brain but have them on your spine and be having all the symptoms you are suffering with. So get the full deal. I only had brain first and then a few weeks later had the brain and spine. Just know it takes a long while in the MRI machine!

As far as the SED rate and ANA, those likely won't tell you much without having them in conjunction with more specific tests. When I got diagnosed I saw a rheumatologist because I was having fevers -- that confused the neuros a bit but they still thought it was MS early on. I had a moderately elevated SED rate and slightly elevated ANA and slightly elevated tests for something called Antiphospholipid Antibody Syndrome.

Anyhow, the rheumatologist called a nationally know MS specialist he knew because he wanted advice about the meaning of these tests. The famous neurologist told him it was not uncommon to see MS patients with slightly out of normal range blood tests, especially in a flare. So basically he said they weren't relevant enough and I had MS. I think SED rate only checks inflammation in the body.

Anyhow, good luck and keep us posted.

Keeping Faith -

I would go for a second opinion. Look for an MS specialist if you can. Even if this neurologist is an MS specialist find another. I think I went through 3 doctors (plus a Mayo clinic visit) before deciding the fourth one was the best - empathetic and skilled at the same time.

Also, has anyone suggested a spinal tap test? That will give useful info too.

Don't be afraid to switch doctors if you feel you aren't being heard or getting what you need. Be proactive. YOU know what's going in your body better than anyone else. If something feels wrong and you aren't getting help, find someone who can help you.

Good luck! :hug::hug::hug:

Thank you!
 

Natalie - thanks for your response. I am switching insurance next month so that will be a good opportunity for me to find another neuro. Unfortunately right now I have HMO so I can only see this two people (i think). I'm 25 so I'm fortunately pretty inexperienced with all this doctor and insurance stuff. Learning fast tho :( My neuro did say he could do a LP but that it would cause me a lot of bad headaches and might not be conclusive. More recently I have been suffering with terrible weakness in my legs and feet. I can't walk or stand for long at all. Good luck to you!

Tara - I am so sorry you are going through limboland. It may take a while for any lesions to appear. Getting tested for Lyme, B-12, and vitamin D is also a good place to start. Sometimes it takes time to get a diagnosis for some conditions. Hang in there and keep pursuing a dx. Don't give up.

Rob - Do they check to see if you had a slipped disc and/or pinched nerve? I ask as you seem to be having lower back issues that could definitely explain the lower extremity issues as well.

Keeping Faith - You say there was "a couple areas of white matter." I'm not sure what you meant by this as white matter is a normal part of the brain. We all have white matter. Did you mean a couple of areas of white matter lesions? Additionally, migraines aren't always felt and they do cause lesions. Some people have auras without migraines. I'm also wondering if the capillary telangiectasia is causing some headaches and thus the lesions. Not sure if that would happen. I also would ask to be referred to a vascular specialist to check that out. Do you experience any type of headache? Keep after your dr. and do follow ups regulary. Something is definitely going on. Keep a journal of you symptoms if you can and bring that to your next appointment. Keep your GP/PCP involved and informed. Make an appointment with him/her to discuss some of the symptoms as well.

to tkrik
 

Thanks for your response! Here is what the test results read: Focus of T2 hyperintensity present within the periventricular white matter adjacent to the atria of the left lateral ventricle as well as in the posterior aspect of the right thalamus. The test is marked abnormal and needs follow up. They seemed less concerned with the telangiectasia when they called me. They just wanted to monitor it: small subtle enhancement seen witin the posterior aspect of the let cerebellum that may represent capillary telangiectasia. Neoplasm is felt to be less likely but cannot be excluded.

I would try to get a second opinion. The periventricular white matter is a common placee for MS lesions to appear. Additionally, I still would ask for a referral to a vascular physician as well as another neurologist. The statement "neoplasm is felt to be less likely but cannot be excluded" would send me straight in to another neurologist. Please consult with another neurologist for a second opinion as well as get a second opinion on your MRI. They do have neuroradiologists that can review your MRI.

Let us know how you are doing.