My first visit to see Dr Klimas and team (Success in the End)

[Gingergrrl]

I've been having some left flank pain last night and today, kinda weird. Soonest I can get in to do the manometry tests is May 7th here in FL and hotels/rental cars aren't cheap.

Do you feel that the level of care, and the coordination of care with testing and follow-through is better in Florida w/Dr. Klimas (and all of the other specialists that you have seen) versus if you were to return home? If the answer is yes, then I would stay in Florida until May 7th for the manometry tests (if it was me).

Are there any cheaper longer term options to hotel & rental car (like an Airbnb and taking Uber)?

 

[Belbyr]

I feel that every doctor I have seen at the U of Miami has been outstanding compared to what I have in Memphis. It just seems lately things aren't flowing smoothly like they were the first 2-3 weeks I was here. In Memphis you get a lot of 'stress' or 'see a phycologist lately?' or 'we can't help you'

I may or may not go home for a couple weeks to get a change of scenery because my dad has to return for business tax time. I will know more what to do when I get a call from the hematologist (who is very average on his online reviews)

 

[sue1234]

What has your calcium level been? Have you had a PTH done? I'm thinking about your multiple kidney stones, plus gastro. issues and depression.

 

[Belbyr]

I'm back home now. My Calcium has always been right at the very top of the normal range. I was checked on PTH a while back but I think we need to check again.

I have been having really bad rib and back pain the last 4-5 days.

Cancer doctor finally called me Friday afternoon, he wants me back in his office on Tuesday for more blood work and a possible bone marrow biopsy. He said the current abnormal tests are non specific but do throw a yellow flag. My guess is some type of blood cancer.

 

[Rooney]

I hope you are more comfortable in your own home/bed. You are so intelligent, can help inform your doctors for a quicker diagnosis.
May relief come soon.

 

[fredam7]

I'm back home now. My Calcium has always been right at the very top of the normal range. I was checked on PTH a while back but I think we need to check again.

I have been having really bad rib and back pain the last 4-5 days.

Cancer doctor finally called me Friday afternoon, he wants me back in his office on Tuesday for more blood work and a possible bone marrow biopsy. He said the current abnormal tests are non specific but do throw a yellow flag. My guess is some type of blood cancer.

I'm really sorry that this may be a real possibility. I don't even know what to say. How to deal with that on top of things?

I think you should certainly pursue it and sorry I was one of those suggesting it could be autoimmune stuff that is giving you off labs with the light chains . That's what they told me but 1 dr was adamant I get the bone marrow biopsy and she was certain I had some kind of blood cancer . So I understand how confusing it is.

Pursue the investigation with the oncologist . Check everything. The labs and the bone marrow . It's a very large puzzle but you will get closer after this .

 

[Belbyr]

I think I have reached the point of life now has no reward anymore, the pain is so bad, and the constant what I feel is a 'survival' fight now, with very little sleep... Receiving a cancer diagnosis will be nothing to me, if it happens.

It still very well could be an autoimmune thing, but if it's cancer, then let it be. Let's get the party really started.

 

[fredam7]

Pain is really the entire thing , it is what takes us to this point. I'm so sorry .

You don't know yet though , what if you find the source and can correct or greatly minimize it? I know we are all looking for that , but some find it .

The pain is horrible . It is relentless and takes us far away from ourselves , we get a glimpse or memory and it seems so far away or almost scary , to realize how far removed from life we have become plus the enduring and enduring all most in case. We all want to live , we want to get better and live actual lives .

You may get to . We don't know yet, your story is still being written . You've done all this footwork , had testing , traveled to see more doctors . Thoroughly investigate with the oncologist , maybe it is auto immune, I know that's not exactly a good thing but who knows , maybe you do well with IVIg or something else

Some do well with IVIg . Some don't . It's like a toss up really .

Your gi is the mystery. How can so little be known ?! I'm sure you have and I don't mean this as anything but a possible help to you , but have you seen a really good Eastern medicine dr?

Do you have finances to go abroad? The biggest mistake I made was not going to China when the acupuncturist said he would get me connected there. Would you try that ? They have whole programs for very little cost . Something to consider maybe .

 

[Belbyr]

Met with the cancer doctor today, he was kind of poo-pooing on the 4 elevated creatinine tests, the elevated urine protein, and the big abnormal kappa/lambda light chain ratio in my 24hr urine. He kept saying I don't think it's cancer, nothing points towards cancer... but here is the weird part. After the appointment, he sent me to the lab and they proceeded to draw 12 tubes of blood and did a urine test. The nurse commented on the doctor's lab request and said, "this is a lot! more than we usually ever see"

This is driving me nuts. I sent my labs to a local nephrologist along with a referral from Dr Klimas. Will wait and see what that doctor says whenever they give me an appointment...

 

[Gingergrrl]

Met with the cancer doctor today, he was kind of poo-pooing on the 4 elevated creatinine tests, the elevated urine protein, and the big abnormal kappa/lambda light chain ratio in my 24hr urine. He kept saying I don't think it's cancer, nothing points towards cancer... but here is the weird part. After the appointment, he sent me to the lab and they proceeded to draw 12 tubes of blood and did a urine test. The nurse commented on the doctor's lab request and said, "this is a lot! more than we usually ever see"

Maybe because he was unsure himself, he didn't feel the need to scare you that you "might" have cancer so it was his way of trying to reassure you but then still run a lot more tests to be extra thorough. I know you just want to know and will be relieved to get an answer no matter what it is (and I felt that same way a few years ago) but he may not understand that especially if you are young (I am assuming you are young-ish but could be wrong)!

When they found that I had the calcium channel autoantibody in early 2016, it was initially a huge series of confusion b/c the two major medical things that it links with are LEMS or Small Cell Lung Cancer (SCLC). And sometimes it is a paraneoplastic syndrome and sometimes it is a sign of your system in autoimmune chaos. I was getting a lot of different information that was very confusing to sort out and even though I did not want it to be cancer (and it wasn't), I just wanted to know b/c I had been searching for answers for three years straight, every day, non-stop by that point and just wanted to know what was wrong with me.

 

[StarChild56]

Sending you very best wishes for peace and health, relief from pain and answers.

 

[Belbyr]

Well it has been about a week and a half, time for an update.

I am not really working with Dr Klimas's group anymore. I think it is mostly due to the fact that there is still so little known about ME/CFS and there is question as to if I even have it?

I went back home for about 2 weeks and saw the cancer doctor for follow up as mentioned. Not every test he ran has come back but about 80% of it has and I can see them online. So far the CD19 B cells are back up higher than they ever have been and this was done through a different lab. Everything else appears to be in the normal range or at least really close to the normal range. I am unable to see some of the cancer panels because all it says is 'see note' but there is nothing shown?

I am back in Florida at the moment, this time we drove and man did that trip make me feel horrid! It was about 15hrs total, in a car for 2 days. I have done the esophageal manometry and the 24hr acid/impedance manometry. It's been about 5 days since the tests and no results yet.

I have not really had any 'horrid' days since being here, but still having my moments where the pain/nausea is 'almost' but not quite unbearable. One problem I seem to be having is really bad rib and back pain. I'm hoping it is maybe from the nasty car ride and the bad beds I've been sleeping on and not something like myeloma which they seem to be most concerned about if I do have cancer...

 

[ljimbo423]

One problem I seem to be having is really bad rib and back pain

I have a lot of rib and back pain that is worse when I feel fatigued. I think it might be CFS related or maybe fibromyalgia. I hope you get some answers soon! Best of luck and stay strong!

 

[Gingergrrl]

I am not really working with Dr Klimas's group anymore. I think it is mostly due to the fact that there is still so little known about ME/CFS and there is question as to if I even have it?

Does Dr. Klimas take an investigational approach like a detective to try to figure out what is wrong, whether it ultimately turns out to be ME/CFS or not? Or would she not be your ongoing doctor any more if she thinks that it is a different diagnosis?

So far the CD19 B cells are back up higher than they ever have been and this was done through a different lab.

Did the cancer doctor have an interpretation as to why your CD19 B cells are too high (or is he waiting for all of the test results to come back first)?

I am back in Florida at the moment, this time we drove and man did that trip make me feel horrid! It was about 15hrs total, in a car for 2 days.

Are you now seeing other specialists in Florida for ongoing care without seeing Dr. Klimas? And 15 hours in a car is brutal (and is about the round-trip distance by car to my main doctor as well).

One problem I seem to be having is really bad rib and back pain. I'm hoping it is maybe from the nasty car ride and the bad beds I've been sleeping on and not something like myeloma which they seem to be most concerned about if I do have cancer...

I would think it is from the car ride and sleeping in bad beds while traveling and not assume it is myeloma (although I know in your shoes, I would be having the same concern b/c this is how my brain works). Thank you for updating us.

 

[Belbyr]

I have not heard from the cancer doctor yet, it's kinda funny my insurance company is trying to get a hold of him asap because they want to know what the heck is going on, lol. I imagine he's waiting on all results to be in. I honestly wish we'd do the bone marrow biopsy. One of my best friends from highschool has a mom that teaches hematology at St Jude in Memphis. She said to just get the biopsy done, it's the only way to truly know or not.

I still need to see a nephrologist on the elevated urine creatinine and the one elevated protein test. I naturally eat a higher protein/meat diet and before my big relapse, I was fairly active in the weight room. I hear men/women that have more muscle tend to have higher urine creatinine levels. I just don't know enough.

As far as Klimas, she is a hard woman to get a hold of because she is so busy. She also volunteers at the VA in Florida I think at least one day a week. When I left, the only things they had me doing was digestive enzymes, probiotics, very low dose atenolol, and the LDN which didn't work for me in the past and isn't right now. I took one of their 'pacing' classes, didn't really feel like I gained anything out of it...

They are nice people and they do some appropriate testing but I honestly was more impressed with Dr Chemali as far as doing a 'work up of tests'. One of my doctor friends from Memphis that is married to one of the board members at St Jude looked up Dr Klimas and pointed out that she is an allergist and has not been board certified for some time... (I don't know if that is true or not)

 

[Gingergrrl]

I have not heard from the cancer doctor yet, it's kinda funny my insurance company is trying to get a hold of him asap because they want to know what the heck is going on, lol.

I kinda like the idea of your insurance being tortured (although not if it affects your treatment of course)!

I imagine he's waiting on all results to be in. I honestly wish we'd do the bone marrow biopsy. One of my best friends from highschool has a mom that teaches hematology at St Jude in Memphis. She said to just get the biopsy done, it's the only way to truly know or not.

If the bone marrow biopsy is the gold standard, is it an option for you to just do it? (or do you not meet insurance criteria or some other issue)?

As far as Klimas, she is a hard woman to get a hold of because she is so busy. She also volunteers at the VA in Florida I think at least one day a week. When I left, the only things they had me doing was digestive enzymes, probiotics, very low dose atenolol, and the LDN which didn't work for me in the past and isn't right now. I took one of their 'pacing' classes, didn't really feel like I gained anything out of it...

That makes sense and I can see her being very hard to reach. None of those particular things would have helped my case either with the exception of the low dose Atenolol which I have taken since 2013 for POTS and is very helpful for me.

They are nice people and they do some appropriate testing but I honestly was more impressed with Dr Chemali as far as doing a 'work up of tests'.

I have consistently heard very good things re: Dr. Chemali but have never seen him.

One of my doctor friends from Memphis that is married to one of the board members at St Jude looked up Dr Klimas and pointed out that she is an allergist and has not been board certified for some time... (I don't know if that is true or not)

That is interesting and I did not know that she was an allergist or not board certified (and am wondering if this is true)? If I had lived in Florida (or anywhere near it) vs. on the west coast when I started this journey, she is the doctor that I would have tried to see.

 

[Belbyr]

Finally met with the gastro doctor and blood doctor. On the gastro side we discovered my esophagus is not working properly. The esophagus is not really squeezing the liquid down, it is kind of falling down the esophagus. The doctor says when that happens, air is going down with it every time you swallow. He thinks that if the esophagus is having problems, then it is likely the stomach and intestines are as well.

He wants me to see a speech therapist to make sure that I am swallowing, speaking, and breathing properly and not causing any additional aerophagia.

On the blood side. The hematologist reran a lot of tests and the 2 that came back abnormal was B cell (CD19) have increased and now my IGM count is low. He is scheduling a bone marrow biopsy to happen in the next week or so. Unfortunately they only do them on 1 day of the week all on the same day here locally. If the biopsy comes back normal, he said it is highly likely I have an autoimmune disease of some sort and that I need to see a real immunologist.

I did another 24hr urine for the creatinine and protein in urine for the kidney doctor, waiting on those results. I keep thinking somehow all this is tied together.

I've been having pain in my throat like it is irritated that waxes and wanes in severity. I would say my health has improved a little, but not much. The new symptoms of rib pain and throat pain are not fun on top of what I am already dealing with.

 

[toyfoof]

Hi @Belbyr

I’m glad to see your update, I’ve been wondering how you’re doing.

How was the gastro able to diagnose your esophagus issue? I suspect I have a similar problem. I’ve never been to a speech therapist (well, since I was a kid and needed it for a lisp) but I’ve taught myself to carefully swallow when I eat and drink because I know I swallow air, which is problematic since I can’t burp. If I forget to be careful, I feel a lot worse.

Good luck with the bone marrow biopsy. I hope/think you have a good team working to get to the root of your issues.

 

[Belbyr]

Hi @Belbyr

I’m glad to see your update, I’ve been wondering how you’re doing.

How was the gastro able to diagnose your esophagus issue? I suspect I have a similar problem. I’ve never been to a speech therapist (well, since I was a kid and needed it for a lisp) but I’ve taught myself to carefully swallow when I eat and drink because I know I swallow air, which is problematic since I can’t burp. If I forget to be careful, I feel a lot worse.

Good luck with the bone marrow biopsy. I hope/think you have a good team working to get to the root of your issues.

Esophageal manometry and 24hr impedance was what diagnosed it. The doctors suspected it during our first appointment just listening to my symptoms.

I am starting to gain a little confidence in my hematologist now since he is seemingly becoming more proactive. He mentioned reaching out to St Jude immunology researchers if the bone marrow biopsy comes back negative.

 

[Gingergrrl]

He is scheduling a bone marrow biopsy to happen in the next week or so.

I am glad that you will be getting the bone marrow biopsy @Belbyr and it sounds like you have a solid team of doctors investigating this. Thanks for updating us and I hope that it goes well and you continue to get some answers.