Symptoms and results. Please help.

It's been about a year of not being able to live life normally. I honestly don't know if I can keep doing this. A year old doctors, getting poked, prodded, scanned, all with no result. I have medical card so I'm sure most of this amounts to doctor's just dragging their feet and trying to soak up Medicaid funds. If I don't get a direct answer on this soon, I'll probably actually lose all of my marbles. Here's a gist of symptoms that's been happening repeatedly. This isn't nearly all of them, though. Suggestions, advice on how to handle doctors, and what tests need to be ran would be GREATLY appreciated.

• Generalized muscle weakness; mainly in legs and very much so in my right leg. Mainly in my quads.
  
• Tingling and numbness in my extremities. Effects all limbs.
  
• Intense pain in my middle back; almost takes my breath away.
  
• Pain in legs and stomach.
• Large amounts of blood in urine with no medical cause; blood still present after cystoscopy. CT Scans of kidneys show no cause.
• Inflammation of extremities. Especially hands and my entire thigh (from hip to under knee, calves aren't affected; minimal swelling in toes.
  
• Occasional loss of breath even when resting.
• Heart palpitations, accompanied with minor to moderate chest pain.
• Mobility issues; I'm 23 and walk with a cane. Even the cane is getting to be unhelpful at this point.
• Extreme fatigue; normal B12 result.
• Fainting and seizures.
• Urinary incontinence; sometimes just leakage, sometimes fully incontinent. Also unable to feel like I've emptied by bladder all the way.
• Light sensitivity; accompanied with pupillary changes. My pupils were normally very small and now it looks as if I've just had my eyes dilated at all times.
• Extreme vertigo when lying down or when moving. Failed neurological test of standing with eyes closed and arms outstretched to the front of body. Vertigo has caused me to lose consciousness. Vertigo is a relatively new symptom (only around 3 weeks since first debilitating occurrence).
• Reoccurring low grade fever; even when asymptomatic.
• Swelling of axillary lymph nodes.
• While in resting position in the ER, my heart rate would fluctuate wildly. Going from 62bpm up to 129, and bouncing everywhere in between; up and down constantly.
• Blood pressure swings as well. Highest: 169/137 Lowest: 105/45 (I lost consciousness)
• Elevated Sed Rate
• Elevated CRP
• Last night in ER, received positive D-Dimer test.
• Liver function blood test has been both positive and negative over the course of this year.
• Normal Thyroid, TSH, WBC, EEG (4 hour), EKG (immediate read testing), negative AIDS/HIV testing… Only thing showing up out of the ordinary is the positive D-dimer and elevated inflammatory markers.

This has completely changed my life-style during a flare up. During a flare-up, I'm unable to shower because I can't stand, inability to drive due to vertigo and muscular weakness; light sensitivity also makes it pretty impossible to drive, especially at night, cannot seem to eat without feeling nauseated. I also am more susceptible to catching common illnesses event though prior to this year, I've been relatively strong with my immune system. Any suggestions or advice?

 

MRI of brain and C-spine only showed bone spurring along my spine.

 

Hey @breeisreallyawesome,

Firstly, sorry to hear the situation you're in. I'm also a year into this and know what you're going through (and there seem to be more young posters coming here by the day).

Initial thoughts are that one or two of those labs and symptoms seem a little incongruent with CFS/ME -- mostly the hematuria, but also, to a lesser extent the mild incontinence. Bear in mind, however, that I'm a rookie here.

People can apparently have the elevated inflammatory markers, as well as a bunch of random other oddities that don't quite reach any other diagnosis (see here and here). I also have weak legs with one worse than the other -- but if you subscribe to the theory about ME being a persistent enterovirus infection (often a close relative of polio), that's hardly surprising.

I'm glad that you got the cystoscopy and kidney CT done and it doesn't seem as if there's anything they haven't checked as far as that is concerned. Nowhere else blood could be entering into your urine from (I think).

If I were you, I'd definitely get the lumbar and sacral spine imaged as urinary symptoms can also stem from that area (cauda equina, etc). These are often done together as a lumbosacral MRI.

Given the lymph node swelling and ESR/CRP, I'd be tempted to ask for an LDH just to be safe, but there's probably a reason your doctors haven't done it already. What's your WCC like and I presume you've had a chest xray?

Have you had an autoimmune panel run yet? Generally includes stuff like ANA, RF, AMA, etc, that could lead you down the road of an AI diagnosis.

Hope you're condition improves and please hang on in there (my generic advice to remain sane throughout this ordeal is to take up meditating and do it lots. It really works!).

 

Hi Bree,

Most of the symptoms you listed sound more or less like textbook ME. How did all of this start, did you suffer from a flu-like illness a short time before the onset of the symptoms you listed?

As Dan mentioned, a number of those symptoms are consistent with persistent enterovirus infection. Take a look at this list of symptoms and see how familiar they sound to you. There are a number of other pathogens that could in theory cause a lot of those symptoms.

Have you been seen by an infectious disease specialist? Have you been tested for any pathogens other than HIV?

You may find the testing and treatment roadmap helpful to sort of guide you through the process of getting to the bottom of all these symptoms. It sounds like you've already ruled out a lot of the obvious stuff (thyroid, B12, etc.).

Regarding the positive D-dimer finding, were you having symptoms of DVT or did the ER just run it as part of a general workup? As discussed here, there are a number of causes for a positive D-dimer finding, but DVT is definitely something to be worried about for folks in our situation where we are unable to get up and move around enough.

Your urinary symptoms (including the hematuria) bring to mind interstitial cystitis. I don't know much about it other than the fact that it seems to be a common finding in ME patients. Has IC been brought up as a possible cause for these symptoms?

 

Also, only because you do have the positive inflammatory markers, ask to get an ANCA run.

Along those lines (really unlikely):

Any strange red marks appear when you're exposed to the cold (if you've tested negative for rheumatoid factor you can probably forget this one)? Absent pulses in your extremities? Ulcers?

Electrophoresis (which will quantify IgM, as well as the other immunoglobulins) is another I would look for as well. Many don't include IgE, so you could ask for that as well if it's available separately.

ETA: And ACE for sarcoidosis if you haven't had the CXR (these suggestions are becoming my standard repertoire!)

 

@ breeis - If you are young your spinal issues are premature, but I would not focus on them as they are fairly common and not often the cause of serious problems or even pain. I would research what tests are recommended as follow-up to your abnormal labs, and seek referrals based on those as much as possible to start with.

 

@breeisreallyawesome @melamine Yeah, the findings from the C-spine are nothing to worry about. There's tons of minor things like desiccated disks, facet joint hypertrophy, and degenerative disk disease (I have all three!) that MRIs pick up. They're just too sensitive (these are called 'incidentalomas'). But if there's no cord compression (which would have been reported and followed up on ) they're not the cause of your symptoms.

I'd really recommend asking about the lumbosacral scan, though. Obviously, it wouldn't be the cause of your overall illness. But if there is something found there that would explain the bladder issues and leg weakness it could give them a clue to look further.

 

I missed where you mentioned you had a cystoscopy sorry. I assume if it was normal they ruled out IC? Glomerulonephritis is another thing to think about with hematuria. Have you had any indications of elevated creatinine in your blood tests or abnormal protein levels in your urine? The CT scan of your kidneys would rule out kidney stones as the cause of the blood but I don't believe CT can be used to diagnose glomerulonephritis.

 

I suffer from a great deal of these symptoms. To answer some of your questions:

I went to the ER last night for what I thought was a heart attack. Severe chest pains, heart pals, labored breathing, losing consciousness. They did the D-dimer, which was positive, so they did a chest x-ray as well as CT with contrast. They didn't find a clot, but the test was elevated enough that they wanted me to do a follow up this week with my GP, and unfortunately I can't get in with her until Friday. No history of asthma.
I'm pretty sure they also performed an ANA quite a few months ago and it was negative. It was just the blood test. They're working on getting my insurance to clear a spinal tap to see if the inflammatory markers are present in the spinal fluid.
IC has not been discussed whatsoever when it comes to the hematuria; I will definitely mention this to my GP and urologist.
As far as skin rashes go, they're more prominent in the cold temps or if I get emotional (even too happy). Also had a weird reaction appear within the past 7 years that has made my skin so sensitive to adhesives that it actually causes blisters to appear on my skin. When this occurred, I had developed a very rare skin disorder on my left leg (caused blisters to randomly appear from my hip area down to my feet. A few also appeared on my right leg, but mainly attacked my left leg. It was the most painful thing I'd ever went through, sans the pain from these flare ups. Then I got sick with double pneumonia around 4 to 5 years ago. Since then, my body just hasn't felt right.
As it stands right now, my ESR is around 94 and my CRP is around 130. Not sure what the number was on the D-dimer test, but it was elevated enough to cause concern and elevated enough they faxed the results to both my GP and Neurologist.
Testing for pathogens: only the HIV test, and maybe a tick panel? Rheumatoid factor was negative. I will definitely suggest getting the tests ran that you all have suggested.

 

This is a good suggestion. Particularly if this all started after a sore throat. Complement levels would be useful to work this up AFAIK.

What are your doctors saying? You've had quite a few significant positives (or so it would seem) so I can't see them just giving up on this.

Unless that's the case, I think your best bet is to persevere. The fact that they haven't reached a diagnosis yet doesn't mean that they won't as more things become apparent.

The best advice I've heard for someone in your situation (and mine, to a large extent) came from a rheumatologist's comment relayed through a talkback on a blog post. Things will either:

"Go away, stay the same, or get worse. And sometimes it needs to get worse for us to figure it out, but you won't die before then."

 

Reactive arthritis (Reiter's syndrome) would seem like another very strong possibility here -- CRP and ESR are usually pretty well elevated.

Any joint pain? (I'd be pretty sure that you're doctors are considering this if you do).

ETA: D-dimer seems to be associated with some coagulation disorders. Has a haematologist been recommended? Maybe after this last result it will be.

 

Sounds like they did a good workup for DVT then, I'm glad they didn't find anything there. Did they test your creatine kinase or troponin levels?

With a history of pneumonia, and definitely if you feel you never quite got back to normal afterwards, you should be tested for IgG/IgM antibodies for Chlamydia pneumoniae. It can cause systemic, persistent infections and has been associated with ME/CFS.

 

This almost sounds like shingles, depending on what the blisters looked like.

 

I've never had chicken pox, so shingles is nearly impossible. They told me the name at the time, but I can't remember what it was. All I know is that at that time, only 12 people in the US contracted it in a year. They said it will never go away, but could remain dormant for a long time or even possibly the rest of my life, but also could reoccur. I was only 16 or so, and I wish I would have paid more attention. It looked more like a cousin to MRSA or something. Lasted for months.
Doctors are kind of baffled at this point. MS and Lupus both run in my family, on both sides, and they're suspecting it might be the start of that; especially since my mother just got diagnosed lupus within the past three years. But since my MRI showed negative for MS lesions, they can't go with that diagnosis just yet. A friend of mine, who is also a member here, suggested it might be a form of dysautonomia. I agree to an extent that - that may definitely be causing some of my symptoms, but I still think there's another illness that just has yet to be found.

 

@breeisreallyawesome I liked your post as a show of support and to welcome you to PR (but not because I liked what you are going through and I am so very sorry for all you are dealing with!) I have been to the ER three times this year (twice on my own and once 2 wks ago after an IV saline procedure that went wrong) so I can totally empathize with how stressful that is.

I hope your doctors can figure out what is going on and you will get some relief soon. Best wishes and there are some very smart scientific people here on PR who offer suggestions that I would have never come up with on my own so you have come to the right place.

 

Wow, that's a bummer. There are times when it's awesome to be unique, that isn't one of them.

It is good that the MRI was clean. It seems like your best path forward is probably workup for SLE if your doctors still think there's a reason to suspect it with negative ANA and then an infectious disease workup. It's good that they're going to check your CSF. You may want to ask if they can check for infectious diseases in your CSF (PCR for enterovirus especially) while they're at it. A spinal tap is something you probably don't want to have to repeat.

 

Definitely not wanting to repeat a spinal tap if I can help it. hahah. I appreciate all of the help. The ER doc also left a message with my GP stating that he recommends that since I've gone a year without a diagnosis that I get referred to a center that specializes in cases such as this (possible St. Louis or even Mayo) to see if they can figure it out. Thank you guys so much! This is the first support group I've come into contact with that actually gives helpful information. All of the others either ignored me completely because I didn't fit in their diagnosis standards or was just all around unhelpful. I'm really glad that I was told about this group.

 

That ER doc sounds top notch. I hope you can make your way to some other good doctors and get some answers. I wish you luck!

 

Hi, Bree! Welcome to Phoenix Rising. I am really sorry to hear of all the problems that you are dealing with.

That sounds like a good idea in general, but I've heard of too many cases where the doctors at Mayo just don't deal adequately with ME/CFS, or some of the more unusual comorbidities that sometimes occur, which seems to be your case. The Cleveland Clinic is apparently much more helpful in this regard.

 

Thou from some of your symptoms dysautonomia may be involved, I think you have far more then just that going on. I suggest to see if you can get tilt table tested to find out if you have coexisting dysautonomia making whatever your issue is worst.

"Most" (thou not all) of your symptoms are common ME ones but you have a couple which are less common (thou maybe still can be in ME?). eg swelling not common in ME .. seems to be more common in those who later find out they have lyme disease or mastocytosis people.

I strongly suggest you get refered to a specialist to rule out systemic mastocytosis. One sign of mastocytosis is what is called a darier sign.. its when the skin blisters when its touched (even clothing may cause skin to blister). People who have mastocytosis also get major allergy issues as well as can get swelling in places of the body and also can have very messed up, all over the place BP (not just going low, studies have found in masto patients it can be swinging high and low).

Systemic mastocytosis can be confused with ME/CFS as mastocytosis can affect any where in the body (its an issue with mast cells building up and they can build up anywhere in body). Systemic mastocytosis often goes undiagnosed even in those who end up getting life threatening attacks of it. (Systemic mastocytosis is much rarer then the more common skin form which causes spots, one may not have any spots showin with the systemic version). http://www.mastocytosis.ca/signs.htm
......

B12 tests arent always accurate as far as if one has a deficiency or not. One can have a intracellular deficiency. A sign of B deficiency are tingling hands and extremitites among it also being able to cause many other symptoms. Many of us who have ME/CFS need more B or certain types of active B. I suggest to check out the methylation protocols.

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• Urinary incontinence; sometimes just leakage, sometimes fully incontinent. Also unable to feel like I've emptied by bladder all the way."

If your doctor hasnt sent you to a specialist for that.. ask him to do so.

I strongly suggest to take another to the doctors with you to help support that more needs to be done, more tests or whatever.. if you arent being taken seriously or they dont seem to be doing much.