Anyone with Cleveland Clinic Experience?
 

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

Hmmm I honestly don't remember who I saw but I don't think it was a specialist for dysautonomia ... I looked at the CC website and the only name that maybe rings a bell is joshua gordon but I'm not really sure sorry. The doc that is outstanding is the one at OSU though. Can't say I was dissatisfied with CC evaluation - they were 100% willing to do extra tests including the MRIs (which was mostly because I was worried about MS - the doc told me no way its MS but he would sign off on the MRIs if it would make me feel better about it which I think most docs would not do). Maybe if you are having no luck with your current docs then this is the right move. For me I didn't realize how good the doc I already had!

Best of luck to you!

I think Cleveland Clinic is an excellent choice. I hope you don't have to wait long to get in, and that they assign you some attentive doctors that will find appropriate treatments for you.

Did they say they offered testing of MCAS? That would be great to see if this is a factor in your complex conditions.

Thank you! --

I'm glad all your time and money looking elsewhere made your realized there's no place like home!

It is just such a rough journey. It is sort of amazing to me I'm bedridden and can't seem to get help ----my brother in law is very ill with terminal cancer and he is surrounded by such a good team who are doing all sorts of treatment. He's still working, while I can't....

Anyway, I hope it's a good step -- we'll see!

Sylvie

Hi En Bloc!

Yes, they are offering MCAS testing....main reason for visit -- also a valiant attempt to stay out of bed because of fatigue!

S

You're welcome. :)

My allergic type symptoms seem to have minimized with the introduction, but it's too soon to tell. I've also been breaking my diet now and then, so I can't tell. Now I'm back on it and has more of a baseline. The studies linked to in the article, this one in particular, note that quercetin blocks more than just histamine, which is why it's so promising. Apparently unlike any other mast cell stabilizer, it also blocks the inflammation. Anyway, worth a try, since it has all sorts of other benefits. I hope it works for you. I just skipped the histamine step, keeping to the natural root. I take 500 mg of quercetin with breakfast. With so little work on the supplement and this issue, it's difficult to know dosage and such things. I may up it to up to 3 500 mg doses at some point, but not now.

I'm seeing a specialist in a week's time, got lucky with an early appointment, otherwise it wouldn't have been till August. I don't know if I'm going to run the tests, since they're not particularly the best and so often result in false negatives. My situation/symptoms, etc. are always changing. Plus, I'd have to pay out of pocket, just over $1100. I may just take the quercetin approach and see what happens, because if I do have it, all they will do is try to use a chemical pharma cocktail to stabilize the mast cells. The one thing I think about is whether I have mast cell proliferation, but there I don't want to do a bone marrow biopsy, since it's invasive and has risks.

Well, I hope your testing and quercetin use are useful. Such a journey indeed! Keep me posted and I'll do the same. In the meantime, good luck!

It does have a number of flavinoids to be sure, but it doesn't seem like quercetin is one of them: http://www.ncbi.nlm.nih.gov/pubmed/14733505. But who knows, perhaps these specific flavinoids can also help block mast cell mediators. I haven't looked into them. Histamine is just one of many things released by mast cells. Quercetin is not the only one studied to prove useful for mast cell stabilization, as some Pubmed research will show. Actually, here is the product created by the physician and his team based on their studies: http://algonot.com/product/neuroprotek/. But it's more expensive and has additives that I don't want. But quercetin seems to be the most effective of even these, though much more study would be needed.

I'd like to figure out how to
 

not let the new neuro know about the old one without having to repeat all the same tests. A similar thing happened to me because the doctor I had seen had a great reputation and the new doctor didn't want to go against him. It was infuriating and a waste of my time!

Hi David,

First of all, thank you for the information and support.

I'd just like to encourage you to get tested for MCAS....For, from all your posts it seems like this might be an apt diagnosis and also one that is not as scary as some of the other disorders you've considered (like sarcoidosis ). I know the testing can be iffy, requiring the refrigeration of urine, etc., but if you and I know this, they might too! Also, there is a big difference between MCAS (deregulated mast cells...normal counts) and mastocytosis (too many mast cells) ...I'm noting the difference for our readers. The first is a managable illness, the other is far more serious. It is the latter that requires a lumbar picture (to my knowledge) and I also think you would be much sicker if you had it (ie have frequent bouts of anaphylaxis, etc.)

So, I suggest you do the MCAS testing for peace of mind and next steps. This is why I'd like to do it too. In addition, mast cells release cytokines as well as histamines....and these buggers, if unregulated, can cause inflammation....might explain your gut issues, as well as my depression and "sickness bevavior:"... my great fatigue. Not to mention MCAS often accompanies/causes PN and dysautonomia. (Caveat: I'm not well versed o
in all of this --I was in the social sciences! , so I'm open to correction!). However, when I first started reading about MCAS recently, I immediately thought of you, David!

I think it's worth the money to find out if this is what underlies your symptoms --- CC will cost far more.

As for the supplements, thanks for the info, but I'm hesitant to take anything with more than one ingredient.....my allergies are active.

Pinkynose...thank you for the thumbs up....I've taken to carting around my test results!

I'm so grateful for everyone's comments and observations.....it means a lot to me....

Sylvie

Hi Sylvie,

Thanks for your suggestions. Just a correction before anything else: we’re looking into amyloidosis not sarcoidosis, but yet it would be more serious, though MCAS can cause havoc too.

Regarding the testing, it’s not so much that one needs to take care with the samples, here the urine sample, but that often there aren’t enough mediators released when you take the sample. It is a very poor test for the condition, but all that we have for now. Testing is always useful, but it depends how effective it is, and here it’s really not. They are working on improving it but barely. This is why they often just begin to treat with stabilizers even if the test is negative, namely, because so often it is negative and unhelpful in diagnosis. Anyway, I’m not sure it would change anything in how I’m treating myself. But I may have it done after I speak to the specialist next week.

Regarding the difference between MCAS and mastocytosis, yes, there is that difference. But they often do a lumbar puncture to rule out the latter. That’s the norm is testing here and in many other places in the US. Dr. Afrin, for example, would often do so, since they would need to rule it out. But, of course, one can refuse that test.

I’ll let you know how my appointment goes. I’m inclined to agree that MCAS is descriptive of what’s going on with me, and I thank you for bringing it to my attention when you did. Whether I have the testing done or not (those high prices are more than I can afford right now), I won’t rule it out and will likely continue my diet and try quercetin, which in studies has been shown to be most effective in stabilizing mast cells, more so than any pharma option. If I see results, which I seem to have seen so far, then it may signal that it is MCAS, at least one possible problem, since there can be multiple ones, and that the quercetin is working. It may be worth it for you to look into the article I posted and check out the studies on quercetin. Thorne has a great one, and it’s precisely for allergies that it would prove useful, since among other things it’s a histamine blocker.

I’ll write more at some point. Good luck on your end, and thanks again for your concern and for bringing MCAS to my attention. :)

i went to mt. sinai when i first began my quest for a dx, treatment, etc. the person i saw there had been recommended by the PN Association. after a cursory examination of me he concluded that i did not have PN! wtf? i had undergone 5 chemo treatments about a year before which had been so neurotoxic that i was unable to walk & had to use a wheelchair and this "highly qualified" PN expert reassured me that all my symptoms did not point to PN.

sooo, stay away from mt. sinai...that quack may be still there & he was the chief of the dept! god only knows how many kindred spirits he may have hired.

which chemotherapy drugs did you use, chemo of certain kinds have already been shown to cause PN, i dont know how he can definitely say you dont have pn, when your the only one experiencing it.

To David: thank you for your corrections and further information about Quercetin etc. I had read about amyloidosis and read more today with your post. It is also a very serious disorder: one that I hope is ruled out for you....

I especially appreciate the information about the lumbar puncture for MCAS testing, for I was unaware of this. You've done such great research! I'm hopeful others reading this site will benefit from your work as much as I have. I recently read a blog written by a woman who went to the Cleveland Clinic for sensory and autonomic neuropathy. Her visit began with immediate biopsies for amyloidosis and Sjogren's. This was a while ago, but I hope they have continued this practice.

To Antonina: What a drag to be dismissed out of hand! It reminds me of the neuros I've called who said they just won't touch dysautonomia. ...even though PN is listed among their "disorders treated;" so frustrating. Have you since found someone better? I think the doc at Mt. Sinai I met with took me seriously...she did order more AI testing. ..yet we did not talk at all. Not what I wish for, but we'll see whether she opens up and is more receptive to me when I see her in two weeks.

The saga continues...

Anyway...as I've mentioned...I'm glad for all the advice, stories, and support I receive on this
site!

i had 5 each of taxol & carboplatin. this alleged PN guru knew my entire history. idk if he is still @ mt. sinai. i hope he's retired.

needless to say i was stunned to hear him make such a counterintuitive pronouncement. i did get lucky 4 years ago when i traveled to johns hopkins & saw the head of PN there. of course the long distance from nyc makes an ongoing relationship with him problematic, if not impossible.