Is anyone else like me? :(

[JenniferWaters]

Okay…I wasn’t going to get into my whole ‘story’ but I guess I will. I need feedback because I’m starting to think that maybe I’m just doing to keep having degeneration everywhere and eventually just drop dead.

I’ll make this as simple and quick as possible.

I had a virus. I became symptomatic (neurologically) two weeks later. Vertigo, paresthesias, various kinds of dizziness, cognitive dysfunction, etc. all developed (some sudden, some gradual). Very typical MS type things. Periventricular white matter lesions. One episode of paralysis from the waist down that lasted only one moment (terrifying).

Fast forward a couple of years. Now we have proprioceptive loss, dysautonomia, severe brain fog (or as Diana says … DEMENTIA!!!).

Fast forward a couple more years – my once insane allergies that became almost invisible after beginning an immune system modulator are back with a vengeance and include random welts/hives on the skin with no apparent cause. Food sensitivities galore (in one year I went from eating ice cream to drinking Lactaid milk to now only being able to tolerate rice milk). I believe there is a mast cell activation disorder but not mastocytosis.

I am in a horrible place with my hormones. I have extremely high cortisol, low estrogen, and slightly elevated testosterone. I believe I’ve had hormone issues since birth but they really spun out of control once I hit puberty. I always told my mom I was turning into a boy!

As far as the EDS goes, check yes to all of these: thumb to wrist, prayer position with hands behind back, hyperextended thumbs, ‘swan-neck’ hands. I do NOT have stretchy skin.

ANA is positive and the level varies each time. I believe the highest I’ve gotten is 1:320 but have had a speckled and a homogeneous pattern. Tests done for lupus and thyroid autoantibodies were negative.

First echo done in 2010 – completely normal. EF 60-65%.

Echo done a few weeks ago revealed thickened mitral valve leaflets with normal excursion, thickened trileaflet aortic valve with normal cusp separation (normal aorta), trace tricuspid regurgitation, trace pulmonic insufficiency. EF 50-60%. This was considered a normal echo, but how can it be normal if structurally it has changed from two years ago?

Other than that:
-Concerned that thickened valves are due to some sort of collagen issue
-Vision changes almost daily (I am nearsighted but have better than 20/20 vision with my glasses on) My eyes FEEL strange, almost like something foreign is covering the lens or something is in my eye, but it is not
-Horrible depression and suicidal ideation, almost took my life last January
-Very emotionally sensitive, aware of it, but cannot seem to stop it (everything makes me cry)
-Worried about pituitary insufficiency even though pituitary is structurally normal (on full brain MRI, not just focusing on pituitary)

I’m sure I’ll think of more. This is far from my best written explanation (I’d normally sound much more medically knowledgeable!), but I wanted to be quick and simple. I’m so worried because it is one thing after another, and I can’t seem to manage symptoms at all. I’m tachycardic; I’m bradycardic, hypertensive, hypotensive. Very light periods, very heavy periods. Breast size increases like crazy then flattens down to nothing.

My MRI did not indicate any type of hydrocephalus and my LP was normal as of 2010. They took the smallest amount of CSF but I felt like I was dying after. I did not have a horrible headache as expected but just felt like I would die. Weakness, nausea, some headache but I would not have referred to it as the dreaded spinal headache. C, T, and L spine were normal except for some mild disc degeneration and compression in many areas.

I’m going to end here. Thanks if you’ve made it this far.

I know I need to get a 24 hr urine histamine test, tryptase level, fMRI of my neck, consult with rheumatology, follow up with endocrinology who was about two seconds away from dx me with Cushing’s a couple of months ago, and I need to find out what is causing these cardiac changes.

Any input? I appreciate all of it.

Jen

[PalominoMorgan]

Hi. Welcome to the same boat I’m on. It’s craptastic. What is going on is everything Dr D writes about in Part 2 of The Driscoll Theory. I HIGHLY suggest you purchase it (small contribution to keep her work going) and read it front to back. You are EXACTLY the kind of person Dr D describes. There are also treatment suggestions and management suggestions in Part 2.

[JenniferWaters]

I already have it. 🙂 Reading more every day.

[Dr. Diana]

Okay…I wasn’t going to get into my whole ‘story’ but I guess I will. I need feedback because I’m starting to think that maybe I’m just doing to keep having degeneration everywhere and eventually just drop dead.
Any input? I appreciate all of it.

Jen

Hi Jen,
Palomino is RIGHT AGAIN. You and I could be sisters (except that we don’t look alike, but MEDICALLY SPEAKING, we are identical twins). I was also virally induced, as was my son. Everything you describe I believe I found the answer for.

For potential hydrocephalus (it is almost ALWAYS missed — external communicating hydrocephalus doesn’t cause enlarged ventricles or optic nerve head effects, usually), do you have any of the symptoms? Motion sickness, mild ear aches, sensitivity to noise and lights, the feeling of pressure in your head, tremors in the morning, tinnitus (ringing in the ears), do you “see” or “hear” your pulse, especially with valsalva (straining), do valsalva maneuvers make you worse (like blowing up a balloon)? We can’t always go by our LP pressures (see Part 2), but symptoms tell a lot.
It certainly SOUNDS like you have mast cell disorders going on. Have you tried (with your doctor’s OK, of course), Zantac/Zyrtec (most of us take double doses). Any H1 and H2 antagonist will likely do OK, but these seem to be most effective in most people. You’ll know the difference in days. If that helps, then it is time to ask your doctor for Cromolyn Sodium (Gastrocrom), or Ketotifen if outside of the United States. That should start to reverse some of the feeling that you are imploding.

THEN, please join the registry as soon as I have it ready (we are testing our blood together) for something that many doctors missed. And better yet, there is treatment! (Yes, I’m already on it, as are my kids. WHAT a difference!). Did you see my lecture at ISNVD? It explains a little about how all of our organs can be affected, but there is more! So, hang in, Hon, we are getting there! Yea! Big hug, 🙂 Diana

[JenniferWaters]

Hi Diana,

Yes I saw the lecture (remember, I was the one who cried watching it?! 😉 )

Regarding the symptoms of hydrocephalus: I am sensitive to motion, yes, but I do not get sick. Ears are sensitive as well when it comes to things like altitude (even driving up or down slight hills). I am okay flying in planes as far as my ears go (but if I don’t chew gum, I’m in huge trouble – my ears have a hell of a time with pressure changes), but we all know the toll it takes on our cardiovascular system while it is trying to make changes to compensate for the lower oxygen levels. I have never been a ‘headache’ person until recently, but I do believe that now it is related to new (yay! 🙁 ) food sensitivities. No tremors in the morning, only on muscle exertion. Ears have been ringing for years, but I also do have TMJ disorder BADLY. My oral surgeon could not believe how small my temporomandibular joints were. The THOUGHT of blowing up a balloon scares me. I feel like I’ll pass out. Any valsalva maneuvers make me feel horrible. I get cardiac pauses and rhythm changes SO EASILY, and I feel like my heart is going to stop beating. And yes, often times, I do get a headache afterwards. The headache I’m describing is felt mostly in my temples. Many times, after exertion, I have a headache that I’m sure everyone can understand – where you want to ‘squeeze your head’. Most of us probably do squeeze our heads! (Or am I nuts?) I have unilateral flushing and it’s HORRIBLY HOT. I believe you commented on a video of mine once and said that you had this too.

Regarding medications: I am extremely sensitive to E-V-E-R-Y-T-H-I-N-G. The last time I took an anti-histamine (loratadine, 1/4 of a pill), it really affected my heart rate and cognition, but my dizziness went away and I actually took a shower standing up! I was amazed but could not handle the other side effects. It was very bittersweet. I have GERD and should be on Zantac or Prilosec for that, but I’m not. My stomach is a mess and becoming more and more sensitive with each passing day. About ‘seeing’ or ‘hearing’ my pulse – YES! BIG TIME! I will sit in the bathtub and I can see my heart beating and my stomach actually moves. When I strain or change position, this happens. It is much worse when I am upright. I figured this was a blood pressure thing, as I fall more onto the hyperadrenergic side and actually get hypertensive when I’m up.

I find that I have to start medications at extremely low doses (I cut my beta blockers into 1/8 of a pill and still have side effects). I hate starting new things because if there’s a side effect, I’ll probably get it. I’ve stopped reading about side effects because so many people thought I was ‘making it up’ !!!

I hope this gives you a clearer picture of where I’m at. I feel a little bit helpless knowing that things could get better if I could tolerate the medications.

Yikes. This is long. Sorry!

Jen (Thanks for the retweet, Diana! That’s me on twitter, too! 🙂 )

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