Small update-- Need help

[Noah091]

Hi everyone!

December 10th was my first doctor's appointment since I went to ER for double vision back on September 19th, 2012. My double vision was weird, as it only affected one eye when I looked to the right. The doctor said it was a sixth cranial nerve palsy, and that the nerve on the right side of my head was not pulling my right eye all the way over to the right side. This was causing each of my eyes to focus in different places when glancing to the right. The double vision was hardly noticable looking at me. Honestly.. I hardly noticed it because I started to turn my head when I needed to look the side. The ER doctor recommend I be admitted to the hospital for further tests. During my stay I had an MRI, CT and LP. The CT and LP came back normal. The MRI showed "spots". I was admitted to the hospital for four days. The last 3 days of my stay I had an IV dose of prednisone which took care of the double vision. The docs explained to me that they thought there was a very good chance that I have MS, but were also considering Lyme and Sarcoid. I was then discharged from the hospital.

Since my hospital visit I really have not had any problems. I have had muscle twitches all over (leg, arms, stomach, butt), and just recently symptoms that appear to be linked to cubital tunnel syndrome (stiff pinky in the mornings with slight "trigger finger" in right hand). Vision seems normal with regards to fine print that I look at from far away being a little blurry. I have attributed most of these things to stress and anxiety, because the possibility of any thing being seriously wrong has gotten me really scared and upset.

Fast forward to December 10, I met with my doctor at the hospital. He seems really unconcerned with everything, saying that hes not convinced that there is really anything wrong with me. He said the spots in my brain could be from bumping my head , playing hockey, bike racing or playing paintball as a kid. He believes starting a medication now would put me in a bad place down the road, as they may neutralize some of the newer and safer medications that are in the pipeline. We took a look at my MRI for the first time, and went through the report. The report listed 5-7 lesions. We went through and looked at each one and the only spot that was even remotely identifiable was a small spot in my corpus collosum, the other "spots" were either hardly visible or not visible to each of us...

I guess what I am asking is what should I do? I feel like I am railroaded in to seeing this doctor as I am prior military and depend solely on the VA for all my healthcare. He basically ended the appointment that any kind of testing would do more harm than good at this point becasue there seems to be nothing wrong with me. He stressed to me that I should live a normal life and relax about this stuff. He wants to see me in 4 months to talk, and then in about 10 months for a follow up MRI. The one thing he suggested was to take 2000 units of Vitamin D3 each day and skip the Omegas.

Does anyone have any suggestions or anything? What should I be doing?

Thanks,
Noah

[suziq38]

I am sorry for your troubles and lack of a solid diagnosis yet.
That is how MS is. It takes awhile to get diagnosed.
Sometimes, I think that you should be prepared for the diagnosis before you aggressively seek the answer to your symptoms.
What I mean by this is get your medical insurance in order, if you can afford long term care insurance, think about it, and maybe some life insurance.

If you can't afford any of the above and your symptoms are so troubling that you want treatment, keep pressing on and ask for the next test, which may be a slew of blood tests and a lumbar puncture.

Ask to see a neurologist that actively treats MS.
Good luck. I hope that you do not have it.

[Noah091]

Thank you for the reply.

Yes.. I understand that this is the case with MS, however, the report clearly states that MS is not the only concern on the table. I just wonder why this particular doctor does not want to do all the tests to rule these other things out.

When he says things like he not fully convinced that anything is truly wrong with me I almost want to roll my eyes... I am just so fearful that there is something that we should be doing now, regardless if its MS, Lyme or something else. Why are we waiting to treat something until something serious happens...

[gomer]

Noah............

Navy Vet here... the VA is a mixed bag, a very mixed bag. I complained to the VA so much that something "else" was wrong for decades. That bought me a ticket upstairs to the shrinks. They were convinced it was all-in-my-head. The shrinks decided I was not nuts, not even depressed and said so. But the medical docs ignored both the shrinks and me.

Fast forward decades later to 2009 and a new non-VA eye doc. Right away he noted my diplopia was NOT related to anything in my med Hx, neuro-muscular and due to MS or other neuro issues. A new and much kinder local VA GM doc at long last ordered a full MS workup.

With the brain MRI & tons of blood work to eliminate imposters I was given a Dx of LONG STANDING RRMS! With my long clinical record the doc that gave me the formal RRMS dx said "you are not surprised are you?"
They did was further routine MS testing anyway. The LP and EVP both also supported or added to the MS Dx.

While I avoid the VA for most of my care, I do get my MS care there. I am on Copaxone and its NOT a bad drug, the tamest of all MS drugs IMO. The new drugs are really unknown as to long term side effects and will be for a while.

MS Doc is the place ya wanna go, VA or otherwise. They know not only MS but also the imitators better than anyone else.

Bottom line is I like my VA MS doc.

Visit us on our forum section for US military veterans here.

Gomer (not pyle) Sir Falls-a-lot