Three years and no diagnosis. Frustrated

[Oredogg]

@Jammy88 Yes, I am a pathologist (MD). I specialize in blood and bone marrow disorders, though do mostly general surgical pathology and laboratory diagnostics. I became interested in this mysterious disease, known as ME/CFS, as my wife is one of the unfortunate 25% ( severe cases). This disease has turned our world upside down. It is quite a puzzle and, as Jose Montoya said recently in a teleconference, it is 'one of the great medical mysteries of our time'.

 

[Jammy88]

@Jammy88 Yes, I am a pathologist (MD). I specialize in blood and bone marrow disorders, though do mostly general surgical pathology and laboratory diagnostics. I became interested in this mysterious disease, known as ME/CFS, as my wife is one of the unfortunate 25% ( severe cases). This disease has turned our world upside down. It is quite a puzzle and, as Jose Montoya said recently in a teleconference, it is 'one of the great medical mysteries of our time'.

I'm truly sorry for your wife's illness.
Hopefully things will get better one day. Please don't give up! I'm sure your medical knowledge will be very precious in helping her feel better. It's just a matter of time and research advancement.

Best wishes!

 

[Oredogg]

Thank you, @Jammy88 for your kind words, encouragement and positive outlook. I do whatever I can, and use whatever knowledge I have gained, to help her. I also like to help folks here, if I can. At the very least I can throw in my two cents. This disease really pushes the boundaries of traditional medical knowledge, a notion that is both frustrating and fascinating. I love a good medical mystery, but it takes on a whole new dimension when it affects my spouse.

 

[Jammy88]

Thank you, @Jammy88 for your kind words, encouragement and positive outlook. I do whatever I can, and use whatever knowledge I have gained, to help her. I also like to help folks here, if I can. At the very least I can throw in my two cents. This disease really pushes the boundaries of traditional medical knowledge, a notion that is both frustrating and fascinating. I love a good medical mystery, but it takes on a whole new dimension when it affects my spouse.

Your wife is very lucky to have you at her side. Your support is and will always be fundamental for her. I'm praying for both of you!

 

[andre79]

@Oredogg thank you for your message. Definately mast cells disorder is something I am going to start testing. During onset i had a monocytosis and eosinophilia which are markers of the mast cells disorder. I also had the red flush in my face. Later test didn't show any problem with my monocytes and eosinophils and the flush in my face is gone but I still have symptoms. Doctors didn't even mention a word about mast cells, and of course, i didn't have any medical knowledge at that moment. It is after a lot of personal research that I am starting to undestand things.

About your wife, there is nothing I can say that is a consolation, except that she is not alone in her journey. i, for one, know how devastating this is because i feel it in my own skin, but she is lucky to have you by her side.

 

[andre79]

When you are desperate, you take desperate measures. Two days ago I finished a three day of juicing fasting, just veggie juices, no fruits. I have to say that the first day of the fast was awful, but the second and third were pretty ok. Some symptoms dissapeared instantly, like hair loss (i didn't lose one single hair during three days), the burning skin sensation, the tingling, the water retention and my skin looked amazing. Of course, i felt weak during the fast and I think the candida got worse (wonder why).

Anyway, here is my dilemma... either I starve myself to death doing juicing fasting (but without symptoms) or I keep eating to keep alive with a bunch of symptoms, what to do, what to do...

I tried to mix the anticandida diet with the antihistamine diet, but there is nothing left to eat... Nothing!

I have three years without gluten, dairy, low sugar. This diet is fine and I can stand it, but the antihistamine and anticandida diet are way too restrictive... Any advice on diet is welcome.

 

[WillowJ]

Anyway, here is my dilemma... either I starve myself to death doing juicing fasting (but without symptoms) or I keep eating to keep alive with a bunch of symptoms, what to do, what to do...

Have you tried the juicing along with regular food? It's high in nutrients and supposedly easier to digest (definitely easier for me because fiber seems difficult, but there are few of us that have fiber issues). You might feel better regardless.

 

[taniaaust1]

I apologize for the title of the post, but this is how I really feel. I am exhausted of going from doctor to doctor (around 40 in three years) and I have not received a diagnosis, except for fibromyalgia and psychiatric issues, despite the fact that I had never presented in my life any psychiatric problem and I don't carry them in my family genetics. Anyway, I don't want to test anymore... I am about to give up... my symptoms get worse everyday and doctors are refusing to treat me because they are clueless about my case.

I have done a table with my suspicions and the test evidence I have. Please look at it and tell me what you think... I can`t even think anymore. The problem is that if I take this table to my doctors they will send me right away with the shrink because "only an obssesed person would do a chart about their health" This is the kind of responses I get from them, so frustrating.

View attachment 10423

What should I do now? Please help...

I suggest to forget about that chart you've done.. as it really doesn't really tell one much as there are many symptoms come under every disorder and by that it doesn't really share exactly which ones you have going on and you could be comparing them with illnesses you don't have. It may also make the doctors think the worst of you by thinking you are trying to get diagnosed with all those things (hypochrondriac). . So I say forget using that and instead I strongly suggest to just clearly list the actual symptoms themselves you have.

From the way you've just presented that chart, I cant even tell if you are likely to have ME/CFS.. same goes for telling if you are likely to have other things you haven't thought of.

Seeing you obviously have a lot of symptoms, I suggest to use the symptom list at http://wwcoco.com/cfids/bernesx.html . Highlight the ones you have and add to this any others you have and try taking that to a doctor.

 

[taniaaust1]

I understand that suggestion a diagnosis to a doctor may not be an intelligent move, but Willow, I have been in 40 doctors in three years! 40! And no one of them have a clue about my case. What else should i do? I have to research by myself, or let myself die... Most of the doctors i have visited are the TOP (I can't imagine how the lower end are) and they are so arrogant... I don't know what else to do...

andre. I went to over 30-35 different doctors and specialists who didn't know a thing before I found a ME/CFS specialist though my states ME/CFS association (which only happened after I'd been sick for over 10 years). I'd probably still be looking if I hadn't worked out my issue myself and contacted them. Since then I've seen quite a few CFS specialists.

You cant hit out blindly with this.. if you may have ME/CFS you need to go to a specialist in this, do not randomly keep going to doctors as you are using burning up your energy and time. (It doesn't matter that they are TOP doctors if they don't know much about the condition you have and cant even diagnose it. Random top doctors do not know everything and unfortunately "top" doctors are often arrogant so if they don't understand an issue they can be quite bad.

For me to get a good GP (not talking about a good ME/CFS specialist here as I have those too).. I've at times gone with someone just out of medical school as often they don't have such preconceived notions on ME/CFS and I can take good info in and educate them (and you cant educate a arrogant doctor). They can be more willing to be doing their job well while learning new things .

We all have doctor hating days ..

Im very sorry to hear that you are in the not too uncommon situation of doing that horrible diagnoses and dr hunt.

When you are desperate, you take desperate measures. Two days ago I finished a three day of juicing fasting, just veggie juices, no fruits. I have to say that the first day of the fast was awful, but the second and third were pretty ok. Some symptoms dissapeared instantly, like hair loss (i didn't lose one single hair during three days), the burning skin sensation, the tingling, the water retention and my skin looked amazing. Of course, i felt weak during the fast and I think the candida got worse (wonder why).

Anyway, here is my dilemma... either I starve myself to death doing juicing fasting (but without symptoms) or I keep eating to keep alive with a bunch of symptoms, what to do, what to do...

Your severe fatigue went too? Im assuming you have that too if you are on a forum such as this.

If a juice fast cures you, I cant see why you cant trial and error one at a time other things to see what else you can take other then juice. There'd be other things you can have, you wont starve on fruit.

I do completely understand just how very hard it is to have a limited diet is to stick with as I have big diet issues too and are currently hence eating things which make me ill as my diet is quite limited (in my case I cant eat much fruit at all as I have severe issues with carbs and fruit has carbs, I can only eat one small piece of fruit per day).

I knew someone who was a fruitarian due to his beliefs ...I may of wrote that "f" word wrong but he was living entirely on fruit.. another level further then just being vegan.. though I dont recommend this in any way, I'd like to say that this guy was actually healthy and didn't starve).

To starve you need too low calories or too low carbs.

 

[taniaaust1]

Believe me a diagnosis is worthless without the right treatment, I've been there and tried endless treatments without success, only little improvement in terms of symptoms after visiting many doctors all over the county and trying different approaches. Many experience what you do.

Getting the right diagnoses maybe helpful if it turns out to be something completely treatable which some things are.

 

[taniaaust1]

i went to the cardiologist and only told her about my pots symptoms, i went to the nefrologist and only told him my urinary symptoms.

If you believe you have POTS, it probably would be a good idea to focus on trying to get a tilt table test done somewhere (I found cardiologists useless for POTS, I didn't find one who knew about it so don't let her not doing anything put you off.. you will need to find someone who specialises in it).. or even testing yourself at home and taking the results in to a good doctor who's willing to listen if you cant get a tilt table. At least POTS is proveable by a test so they cant say its in your head.

If you have POTS at least that is something which can be treated some. POTS can appear secondary in many different illnesses.

Avoiding telling them more symptoms which may seem outside their areas could make a specialist miss a diagnoses as he may not get a clear picture of your issues. I take a full symptom list in with me to any new dr when Im trying to get anything new diagnosed.

I was told that I had PBC and I had the liver biopsy to confirm. The procedure was awful, it was one month and a half ago, and I am still recovering because the doctor "fixed" and umbilical hernia that I didn't know that I had, and gave me three months of medical rest. Anyway, after I had such a traumatic procedure i received the news that "something happened" with my liver sample and that it had "artefacts" in it so, the results are not conclusive.

Can you believe it? And they have the nerve to ask me why I am so dissapointed! That was a very harsh punch I received. Anyway, from the sample all they could tell is that i have slightly fatty liver (i already knew) and "apparently" the biliary conducts are unaffected. So the hepatologist is going to treat me for the fatty liver but he can't tell me if I have PBC or not. If I indeed have it, the doctor says is not even in stage I. My whole family is totally infuriated with this, but i just felt sad. If I were a revengeful type of person I would sue them for a huge amount of money, but i am not..

sorry to hear you went though all that.

 

[taniaaust1]

So, back to starting point... He says my problem is allergies (He ordered a IGE test and it turned out high, so that explains my itchiness), so next step is going to an allergist.

A very good move seeing you said your symptoms go when you are on juice fast. You could do some food challenge testing while doing that (sometimes allergists don't pay much attention to food intollerances and maybe you have those).

. My symptoms are totally organic and real, but now I wonder whether my mind is to blame. I don't know what to think... I have always been such a positive girl... how come my mind switched that way? It makes no sense... My illness started with an extremely traumatic situation, maybe the stress triggered an autoinmune disease? But what could it be?

food issues!

and if you have POTS symptoms, you shouldn't go thinking its all in your mind until at the very least you have had testing like tilt table testing done.

 

[taniaaust1]

@Jammy88 mast cells disorder Jammy! Actually that was one of the options I was studying before the PBC stuff and totally forgot about it. And it has treatment, right? Do you have any idea what test should I perform to diagnose it? I could go to a hematologist instead of the allergist.

Don't give up on that allergist. Think horses before zebras and food allergies or intollerances very commonly cause of all kinds of issues. (So does mast cell issues cause problems with food but that may be a lot harder to get diagnosed or worked out).

Allergists may be familiar with mastocytosis and mast cell disorders too seeing it causes allergies. I had an allergist check my skin looking for signs of it.

 

[taniaaust1]

! There a couple of tests to diagnose mastocytosis:

1 - Tryptase level in blood (sometimes can give false negatives…)
2- bone marrow biopsy (more invasive, but more accurate)

I have an uncle with systemic mastocytosis and he's told me bone marrow biopsies can still miss this disorder if one gets unlucky and the sample doesn't happen to be in the place in the marrow with a build up of mast cells). It can be a hard illness to diagnose. (my uncle still wants me to get a bone marrow biopsy done,).

 

[andre79]

Have you tried the juicing along with regular food? It's high in nutrients and supposedly easier to digest (definitely easier for me because fiber seems difficult, but there are few of us that have fiber issues). You might feel better regardless.

See @WillowJ I hadn't thought of that (damn brain fog) but yes, that could be something to try next. thank you!

 

[andre79]

@taniaaust1 Thank you for your replies Tania, in fact, i felt weak during the fasting but a little more energetic (does that even make sense?) It is so hard to explain, I do have awful fatigue, with good and bad days, my symptoms come and go randomly, I have tried to find patterns (if I eat this, i feel better or worse) but I can't because sometimes a specific food triggers something in me, and sometimes it doesn't. So, if not even myself can understand it, imagine try to explain to doctors, that are not the more open mind persons you can find.

So, here is my action plan. I will find an allergist to perform an allergy test on foods. I will test the triptase level and if there is indeed a problem with my mast cells disorder, I will have to find an specialist. I will do juicing and regular food at the same time. I don't think I will have a bone marrow biopsy, I had such a trauma with the liver biopsy. I hope they can diagnose me without the bone marrow biopsy.

 

[Jammy88]

Good luck @andre79 … praying for you.

 

[Misfit Toy]

@Jammy88 -going to get a shot of Enbrel today. Will let you know how that goes...!! Nervous.

 

[Jammy88]

@Jammy88 -going to get a shot of Enbrel today. Will let you know how that goes...!! Nervous.

Good luck darling !!!


@andre79 , do you have any news?

 

[andre79]

Hi guys,
So last month fasciculation came back, like the ones I had during onset and I started again a Vitamin B complex and puff gone again. So everytime I have fasciculations I take vitamin B complex and they dissapear. What does this mean?i lack vitamin B? Does this have something to do with my overall symptoms? Is there a clue here?what do you guys think?