[Cessairskye]

Hello :-) thank you for the warm welcome!
OK so I need some input and possible encouragement on what direction to go.
Almost a decade ago I started having some unique symptoms that my PCP thought showed concern for MS testing. Was told not diagnosable as MS at the time. Flash forward 5 years... Hadn't had much symptoms for some time, got really sick (pneumonia) and the original symptoms were back. In that time I have been bounced between neurosurgeons (I have a non-active pituitary microadenoma) rheumatologists, gastroenterologists and hematologists. They all say the same thing "there is definately something wrong, but...." Because I'm not defineable in their specialty i get shuffled along. (The one thing they all say is it is autoimmune) my PCP keeps coming back to MS.

Over the past 3 years everytime I get sick with a cold or flu I have a 6-12week period where my body just has a fit. Here is what I have...

Fatigue so bad I can't function. It's worst in morning and eases up in the early afternoon.
Numbness and itching in face, arms, chest and hips/thighs
Walking/Balance/Coordination Problems... I look like I'm drunk
Bladder Doesn't work right- horrid urge and incontinence
Constipation
Vision Isn't quite right and get bad eye aches in left eye only
Dizziness and motion sickness
Pain in my arms, neck, back and legs. It gets crazy at night or if I'm tired.
Electrical zaps!
Cognitive Dysfunction - I'm so out of it I almost can't function mentally some days
Emotional Changes - zero patience!
I have never been a depressed person but this go round I'm a wreck
Speech issues... I go to say one thing and either gibberish or a different word comes out.
Choking and swallowing issues
Headache all the time
Tremor that comes and goes.

They run my blood every time and the results are always the same...
Very low vit D
Elevated Eosinophil
Decreased nutriphils

I get a pituitary MRI annually and because there are no visible lesions I get told it's not neurological.

My question is.. Does anyone know if pituitary MRI is the same as brain MRI that would check for lesions (no they have not checked cervical) Do I push for different MRI...how about a new neuro? Am I just losing my mind?

So tired of feeling out of control

I appreciate the support and input!

[mrsD]

Elevated eosinophils is a cardinal sign of parasite infection.

Have you been evaluated carefully for Lyme?

We have a poster on PN who went undiagnosed with nerve pains and more and just had a new Lyme test since 2012, which showed positive, when the other tests were neg.
Lyme is really difficult on the nervous system.

Here is his post with details on the new testing:

http://neurotalk.psychcentral.com/post1018647-10.html

We have had posters over the years on the various forums who have had chronic and confusing collections of symptoms and ended up with a Lyme diagnosis.

[SallyC]

Cess, it does sound very much like MS, but Mrs D is right, there are
other diseases that mimic MS. Lyme is one of them. If you have
been cleared of Lyme, then I would certainly keep pursuing a DX.
If this calls for a new Neuro, then, so be it.

Let us know how it goes for you.

[Cessairskye]

I have been tested for everything from Lyme to Lymphoma and everything in between. The number of blood tests I have hard is crazy. I'm not sure what 2 tests they took for Lyme so I called my doc and asked. They are calling back tomorrow.

[NurseNancy]

i know neurologically that Vit D is very important. i would push to take a supplement of Vit D. have the dr tell you the dose. i take 1000 IU's/day. a lot of us take Vit D.

another thought i had was: have you seen an opthamologist? many times with vision/eye symptoms the eye dr can see MS changes. i'm not saying that's what it sounds like. but don't overlook an eye exam by an eye DR, not optomatrist.

you might also want to consider the suggestion of getting a 2nd opinion from a neurologist or an MS specialist. get copies of your test results and cd's of your mri's. you'll need them and it's a good idea anyway when you're having as much done as you are. start amassing a medical file on yourself you can take to different drs.

keep us posted.

[Cessairskye]

I'm taking the most common advice...time for new docs.
I'm getting a neuro. I pulled all my records from the last decade and my spinal tap/CT and MRI from 6 years ago showed lesions! Apparently no one thought to mention it. Also, scheduling an appt with Neuro Opthimoligist.

[Mariel]

My experience was perhaps similar to yours. I ended up with three diagnoses, MS, Porphyria, and (later) Polycythemia Vera. The Porphyria is genetic and I had it all my life but symptoms were rare at first and not diagnosed. Then MS came in as a dx when I got Optic Neuritis (please see my lengthy post just made on the thread for Optic Neuritis). I believe I have both of these in synergistic combo, but I stopped seeing neurologists when I found I was doing everything I could do for my condition without their help.
Later I developed another genetic malfunction which is NOT hereditary, Polycythemia Vera. In this disease the "'phils" are usually not normal but the doctors don't pay much attention to them--they are looking for changes in red cell and platelet counts. For this disease I see hematologists. So you might possibly add hematology to your long list of "who to see". Polycythemia Vera or its cousin ailments should be pretty easily dx'd by a CBC (regular blood test) and perhaps a test for the JAK2 mutation, which would be diagnostic if positive. This disease I got much later in my life, but I don't think it would hurt for you to be checked out for abnormalities in your blood panel. Maybe this has already been done.
I have learned over the years how to manage my illness with diet and avoidance of triggers. My pcp and her assistant are wonderful in helping me avoid drug triggers, and an online Porphyria group has provided the rest of the triggers. For my Polycythemia Vera I went twice to Mayo Scotsdale for p32 radiation, which has now stabilized my red cells, so I haven't needed phlebotomies now for four months. I think Mayo Scottsdale is very good for hematology--they even verified my Porphyria (even though that was not what I was there for at the time). I saw Dr. Cammoriano there (hematology) and also was sent to an outstanding neurologist.
This sounds confusing but you too have a confused picture. Hope it clears as much as it can.

[Cessairskye]

I have an appt with the hematologist in 2 weeks too! My EOS level is at 28%. I have done some reading and have found some really interesting stuff about studies in the UK, Germany, Sweden and Canada that have shown in a certain population of people with MS their eosinophil level spikes during a flareup.

I had a bone marrow test last year and all it showed was my EOS level was at 21% and no I didn't have blood cancer.

I am doing some research on the MS center at Mercy hospital in Sacramento, turns out it is covered by my insurance so I my just saddle up and head that way if they keep jerking me around up here.

[NurseNancy]

you sound very level headed. please don't give up getting the appropriate answers.

it can be very surprising when you get copies of your dr's notes. i've often found inaccurate and outright wrong info in my notes. that's why i'm such a stickler for telling people to start their own medical record and get copies of reports and dr's visits.

[Mariel]

Talking about inaccurate notes, my hemo at Mayo wrote in his notes that I was a descendant of Mary Queen of Scots. I explained that this was inaccurate, that the truth was that Mary and I had common ancestors. He didn't change it, just went on writing fast, because he had a lot to cover in a short time. I realized that these notes might make some one else reading them think I was delusional.
However, I have since then actually found my foremother, Eschyna de Molle, on the Stewart tree...very interesting material that was hard to find, made me feel like I'd completed a research thesis. So Mary Queen of Scots actually is descended from a common family tree as I am, and we both have or had Porphyria.