Dear fellow NT'ers

Well, I just feel too sick to keep tooling around NYC looking in vain for a good team and a treatment plan, so I began the process of going to the Cleveland Clinic. I'm seeking a comprehensive treatment approach and testing for: autonomic/sensory neuropathy, Mast Cell Activation Syndrome, depression, possible Ehlers Danlos Syndrome, and/or any other autoimmunological explanation for my very debilitating symptoms.

I'm particularly frustrated that my rheumatologist referred me to Hopkins for a Sjogrens lip biopsy, my big cheese Columbia dysautonomia specialist's advice (for $800) is to "keep moving," and apparently the only specialist who does MCAS testing, Anne Maitland, is not taking patients (her office referred me to Boston). I've made many, many phone calls, just saw my third (uncommunicative) neurologist, and I feel stuck in this big city with so many teaching hospitals...

Has anyone gone the CC route? Your advice, experiences, and alternative suggestions are so welcome. Thank you!

S

I just read the site for Cleveland and they offer everything from conventional to integrative. As far as the neuropathy you talk about there are members here who seem to be doing good with their protocols.

If it were me I'd try to find a clinic similar to this one. They work with Many conditions.

**

I dealt with 10 yrs of depression and believed it was thyroid all that time. MD's I saw didn't help me at all...my D.O. called in for theraputic dose of desiccated thyroid support and all those of years of depression lifted...then found years later Vit D deficiency as I was in a low mood. SO MANY conventional MD's. don't get our thyroids supported. They go by their numbers and we are not numbers.

Working with one or two issues at a time seems to be the way I'd go.

One of our members is doing great since she found she has the MTHFR mutation gene. She was challenged with depression for so many years and now since she's addressing this mutation with what her body needs, she is doing so good.

Hope you can find your way.

Hi Caroline,

No thyroid problems! Apparently dysautonomia, mast cell activation disorder and
Ehlers-Danlos syndrome (eds - which is genetic) can from a cluster. It is estimated 70% of people with eds also have depression. This is why I wish to be tested for all of these things. I did manage to line up the genetic testing here just today! Thanks for your input!

Hi SylvieM,

I'm sorry you were not able to find anyone in NYC that can help. I was at Columbia yesterday and it was a waste of time so I fully understand. I have heard good things about the Mount Sinai Neurology department...have you been to anyone there?

Wishing you luck with the Cleveland Clinic!

Cliffman

Hi Cliffman!

I just saw a neurologist at Mt. Sinai, and I'm sure she is competent, but she was also very uncommunicative. I do have several excellent doctors --PCP, Ob-Gen -- so I guess I have high standards. As I'm sure you know, PN is just such a challenging disorder --- especially with all my autonomic symptoms, that I just would like someone who will spend some time with me talking and is also able to think creatively.......

Glenntaj recommended someone at Weill-Cornell, and I'm going to check him out too.

Feel free to PM me if you would like more info.

Hope you're doing well....

Sylvie

Hi Sylvie,
I went to the CC after a year of seeing a neuro at OSU. I simply wanted a new perspective on my symptoms (autonomic and sensory). Sounds like you have some other things you are looking into but thought I would tell you my experience with this. The neuro came in, talked to me for a while about my symptoms and did a basic neuro exam (which came back clean of course). He looked at my file and stated "you currently see Dr.Kissel at OSU?! I once saw him give a speech, he is a fantastic doctor" (which I never had a problem with him as I said, just wanted a fresh opinion). He then recommended I repeat a skin biopsy (which I had had 6 mos previously) or a new set of MRIs if I wanted. So nothing new. Now like I said your situation sounds a little different so maybe others will have better opinions.

Dear Boiler,

Gosh, your guy must be planning to move to a prestigious teaching hospital in NYC!

I'm glad you wrote me! The new neuro I just saw at Mt. Sinai (the silent one) also spent nearly a decade at the Cleveland Clinic....

I'm hoping the testing for Mast Cell Activation Syndrome (MCAS) will be fruitful....but I'll see who they assign me to in the other fields before I fully commit. There is a Dr. Shields there who I hear is good for dysautonomia... is this the doc you saw?

Good to get your feedback...Thank you.

S

Sylvie,

I posted this a while ago on a separate thread and in the old mast cell thread you started, but here it is again in case you didn't see it: https://chriskresser.com/quercetin-heal-leaky-gut/

One way that I'm seeing whether I have MCAS is by using quercetin to see if there are any changes, which is one method of checking, though in medical settings they use antihistamines. But this is also relevant, since testing for MCAS is wholly inadequate with plenty of false negatives.

Either way, good luck with everything.

David, grape seed extract is a super anti histimine antioxidant.

Thank you David!

I've ordered Quercetin. A good idea because most antihistamines now make me hyper (what's that about?) I'm also looking at histamine levels in food...but I'm not going to change to low histamine yet because it is radical..no nuts, dried fruit, yogurt.....that practically is my diet...I'll wait for the tests.

Yet I feel like I'm eating more supplements than food, so I think it would be hard to gauge a response.

When is your MCAS testing? From everything I've read about you it seems MCAS makes sense.....

**

I really hope you get closer to a diagnosis too.

Such a journey.

S