yet another person with lots of issues wondering if it might

[LizardKing]

Long story, let's start with cancer.
Pissed blood starting in 2008 to find bladder cancer in 2013 and had my bladder removed.
Back to pissing blood on and off again since early 2015 and trying to get an answer as to why, AGAIN.

In 93 I tore my upper back muscles and shoulder blade out of place on one side, took a year to heal and since it
was Worker's Comp I was treated like a criminal throughout the whole ordeal.
The next year I had what was diagnosed as fibromyalgia, but little other testing was done.
I manage to get by with it for two decades by changing job field to desk work.

About 2011 when the cancer was getting bad I started having a lot of problems.
Had bad teeth removed and surgery for cancer in 2013, hoped to feel better after all that.
Was told 6 months after surgery, ten months later it was clear I was NOT recovering to where I needed to be.

Symptoms?
Long term: pain that varies a lot day to day, complete exercise intolerance (anything repetitive for a bit causes severe burn and long term pain, someone two weeks out I feel it if I overdo something), poor sleep for two plus decades and need one to two naps a day to get by (did recently get a sleep apnea diag), brain fog that is pretty bad some days, muscle spasms and tics in any muscle often for an hour, migraines all my life, constant fatigue and yes heat makes it much worse, breaks out in sweat in slight heat and often for no reason at all, I have times where my vision is really blurry though normally is really good (to the point I have trouble seeing my large screen TV), and some other stuff.
Long list, but the past few years I have had some issues come up new and/or increasing: ringing in my ears to the point I can hear it over TV and music, some numbness and constant tingling in my hands and feet and times I get that in other parts of my body like side of face, feeling of wetness on skin in spots, have had some dizzy spells and often walk a bit funny, esp. when I get up and start walking, minor hand tremors esp the left hand which tingles the worst,, lots of nights of severe restless leg syndrome, jerking of my limbs at times but mostly at night, I find I am getting clumsy which is NOT like me at all and weakness that shows up as dropping things and having trouble doing other tasks that might cause me pain but used to be able to do, now I lack strength to do them, and other things that I naturally have trouble remembering until they start bothering me a lot. I wake up feeling like shit every day but some morning worse than other and that has gotten worse. I am usually pretty sharp mentally even when I had what I thought was fibro brain fog but that is much worse now too. Since January I have had mild to moderate nausea, itchiness all over my body that antihistamines control but still have days of a lot of itchiness, and demographia.
Scratch my skin a little and it welts up and never had anything like it before.

Recently have been tested for a lot of things and except for urinalysis everything is fine and yes, my B12 is 600 but no vitamin D test yet.
SED rate, T4, TSH, B12 (B6 results not in yet), CK, lipids (those are ugly..), comp. metabolic panel and other tests some of which I am waiting for. I do have some things in my urinalysis that are out of the normal range but none of the doctors say much about it, I will bring them to the new urologist for answers. Things from liver but my blood work is fine for liver problem indicators...
Going to get a sleep study done and a nerve conduction test but do not have a neuro referral.
Never had an MRI but have had CT scans.
Since the tinnitus and tingling started I have looked harder at other things than FM (fibromyalgia) for my issues though never had a firm diag of FM. When I was diag'd in the early 90s ofc all doctors thought it was in my head.

Looks like a lot of things are being eliminated but with what appears to be neurological issues increasing and not going away the past year or more I have to think it might be MS.
Or I am really lucky and have FM, MS, and a recurrence of bladder cancer. Seeing a new urologist next month and insisting I get answer for the bloody urine and the GPs have done urinaylsis showing microscopic blood for months, previous urologist never checked for that for the year plus I kept asking for answers to the repeated bloody urine incidents.....

Studying up on MS and reading about what people who HAVE MS experience makes me wonder if all the attacks of strange stuff I have had which sound exactly like what they also experienced might mean MS.
It has been blown off by doctors as FM or all in my head for decades.
I have gotten worse and FM is not supposed to get worse and is to the point I have a hell of a time getting anything done anymore.

So, does this sound like undiagnosed MS?
The other things that it sounds a bit like in the immune system malfunctions from cancer and I did have it a LOT of years.
All the doctors ask if I had chemo and I did not but likely should have had it but that is another issue that I am mad about.
No chemo, no radiation, just surgery.
At this point they want to claim it is in my head because they have no idea what the problem is yet none have looked into MS.
The worker's comp doctors mentioned that in 1993 but never tested for it.

Since a lot of things have gotten worse I do really wonder if I have had MS for almost 25 years without being diagnosed...

[lyndacarol]

Recently have been tested for a lot of things and except for urinalysis everything is fine and yes, my B12 is 600 but no vitamin D test yet.
SED rate, T4, TSH, B12 (B6 results not in yet), CK, lipids (those are ugly..), comp. metabolic panel and other tests some of which I am waiting for. I do have some things in my urinalysis that are out of the normal range but none of the doctors say much about it, I will bring them to the new urologist for answers. Things from liver but my blood work is fine for liver problem indicators...
Going to get a sleep study done and a nerve conduction test but do not have a neuro referral.

Welcome to ThisIsMS, LizardKing. We are glad you found us. I am so sad about everything you have gone through (My father-in-law had bladder cancer and also had to have his bladder removed. I know it is not easy.)

Your symptoms are NOT in your head!

You have asked: "does this sound like undiagnosed MS?" In my opinion (I have no medical background), many of your symptoms are consistent with a diagnosis of MS, but also with other more common conditions.

Long-term (even your 25 years of symptoms) vitamin D deficiency has been associated with numerous cancers (including bladder cancer), muscle pain and cramps, fibromyalgia diagnosis, dental caries in children and periodontal disease, obstructive sleep apnea, head sweating, general fatigue and many more that you have described.


D*facts Bladder Cancer (5 min.), Mar 2010
Dr. Cedric Garland interviewed by Carole Baggerly


epithelial cells, tight junctions; complex computer prediction model (for breast cancer & colon cancer DINOMIT:
DINOMIT Theory of Cancer
Disjunction (Decoupling) - Vit D prevents decoupling, which is first stage of cancer (Loss of tight junctions, establishes conditions favoring natural selection and tissue compartment)
Initiation (genetic variation); Acquisition of genetic variation in speed of reproduction and aggressiveness
Natural selection; Competition for space and tissue compartment
Overgrowth; Growth of large mass and invasion of basement membrane
Metastasis (spread); Remote tissue colonization
Involution (cancer stops or slows); Growth inhibition may occur if vitamin D receptor is present
Transition (becomes chronic condition)


Dr. Cedric Garland - Does Vitamin D Prevent Cancer interview by Carole Baggerly (11 min.), Feb 2014:


Breast cancer, for example, is a vitamin D deficiency; it happens that it is also true of colon cancer, it happens that it is also true of pancreatic cancer. And it's largely true of ovarian cancer, cancer of the brain; it's true with adult leukemia, bladder cancer, and it's true of cancer of the kidney.

@4:08 What about those people, who have the misfortune of already either having or having had cancer, is it of any benefit then? It is of striking benefit. We've just had a paper accepted that shows that…


Misdiagnosed Vitamin D Deficiency (9 min.)
with James E. Dowd, MD, FACR, ABIHM:


Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.
@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…
Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it - either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms unfortunately are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.


Is obstructive sleep apnea linked to low levels of vitamin D?
http://www.clinicaladvisor.com/is-obstr ... le/483478/


Please ask your GP (or the new urologist you will see next month) for a vitamin D blood test (the "25-hydroxy D" test). Request your own copy of the test results – it is very important to have the actual test result numbers. Over 1/2 of the world's population is deficient in vitamin D – the estimate for the US population is more than 70%! Every system in the body needs vitamin D. If you have had a Vit D deficiency for long time, raising the vitamin D to an optimal level in your blood will not immediately solve any problems – the "tank" is empty and it will take a long time to replenish the vitamin D needed in your cells and tissues.

[LizardKing]

I will see if I can have a vitamin D test done, but I am far from a shut in in spite of my poor health.
One thing I didn't mention was the few years I spent working for national nuclear labs and radiation
exposure for sure causes cancer. I have filed for the $150k the gov't pays former workers but I miss
that automatic payout because I was at the one three years after the cutoff date though the original proposal
covered the years I worked. I assume it is because they were clearly dirty those years too.
I got my cancer about 7 years after I left the facility and it was not diagnosed in part because I was "too young to have bladder cancer".

I have always wondered if I had something other than fibromyalgia, that was the worker's comp doctor's diagnosis and he wanted me to
look as bad as possible and in the early 90s a diagnosis of FM equaled malingerer.

What other common conditions have similar symptoms other than fibromyalgia and chronic fatigue syndrome (so similar, I feel like one or the other depending on day). I have been looking around but the nerve stuff that has started to NOT go away brought me here looking hard at MS.
I have a nerve test next month but no neurologist referral and I am waiting to schedule a sleep study.

[lyndacarol]

What other common conditions have similar symptoms other than fibromyalgia and chronic fatigue syndrome

You have been tested for a possible vitamin B12 deficiency; your result of 600 pg/mL on the serum B12 test would seem to rule out a deficiency. However, please be aware that thorough initial testing usually includes a folate test, a serum homocysteine test, and a methylmalonic acid test (the serum B12 alone is not adequate to uncover a deficiency in the tissues).

Since a B12 deficiency can result in neurological symptoms, you want to be certain that this is not the cause of your symptoms.

The University of Chicago suggests the following blood tests to investigate one common neurological symptom (peripheral neuropathy, which is tingling/numbness/pain in the arms and legs) – you have had many of these already, but maybe there are some ideas to discuss with your doctor:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Nutrient deficiencies, like deficiencies in magnesium and zinc, are also common conditions which can have your symptoms. For example, a magnesium deficiency is a well-known cause of migraines. There are lots of possibilities to investigate – you need a doctor who enjoys being a "disease detective." I would suggest the simple vitamin D blood test first, since this can result in your symptoms and is the most common deficiency.

[LizardKing]

I am waiting for the results for the methylmalonic acid test.
Have a nerve test next month.
I have another doctor that I believe will run any tests I want and was thinking of having him
do the vitamin D and magnesium tests and any others that might apply.
I'll be reading the list you provided of tests but have had most of them already.
I have literally had the migraines since 6 months old...
I have seen your posts here but frankly doubt it is the D or magnesium but wish is was.
While I am dealing with all this I am FINALLY seeing another urologist and need to find out why
I still pee blood and frankly feel it is the cancer back and likely in my liver and maybe one kidney.
Urinalysis shows a few things out of normal range but std. blood work doesn't.
I also now wonder if I have FM AND MS. It's pretty rare but not unknown.

I wish I could find a disease detective doctor.
As a matter of fact I have needed one for almost a 1/4 century.

[ElliotB]

Are you following a gluten free diet?

[LizardKing]

Are you following a gluten free diet?

No.
When I look into gluten intolerance I read stuff like this:
Over time, the immune reaction to eating gluten creates inflammation that damages the small intestine's lining, leading to medical complications. It also prevents absorption of some nutrients (malabsorption).
The classic symptom is diarrhea. Other symptoms include bloating, gas, fatigue, low blood count (anemia), and osteoporosis. Many people have no symptoms.

My blood count is normal and while I have some symptoms it doesn't seem to fit me too well.
I don't have this:
Keratosis Pilaris, (also known as 'chicken skin' on the back of your arms). This tends be as a result of a fatty acid deficiency and vitamin A deficiency secondary to fat-malabsorption caused by gluten damaging the gut.

or this:

Fatigue, brain fog or feeling tired after eating a meal that contains gluten.

I am fatigued most of the time, not after meals.
My symptoms do not seem to be related to when or what I eat and until recently I have been pretty insensitive to most things with no known allergies. End of January this year I became itchy all over my body and now have dermographia. Antihistamines help with the itchiness though
I am still getting spots and when I scratch it I get the dermographia reaction.
My blood work shows my liver is not seriously out of whack to explain the itchiness.
I am getting more and more symptoms that are new, no longer subside, or are getting worse.
I am middle aged and have had a pretty lame "fibromyalgia" diagnosis for over 20 years.
Little testing was done until recently since I am also dealing with cancer but did NOT have chemo but likely should have.
I am beginning to wonder if I had RRMS and am not going into PPMS or FM and now MS or autoimmune reaction thanks to long term cancer.
Trying to get the testing done to determine what's going on and I am firm believer in proof.
FM is often a diagnosis of "I have no idea so I will call it FM or psychosomatic".
After spending over half a decade trying to get a bladder cancer diagnosis I have little faith in doctors because in my personal experience
unless you get a good one they can and will let you suffer for years and blow you off unless you have something easy to diagnose.
As a matter of fact I have again been pissing blood, both visible and microscopic for over a year now and am changing doctors because the last one was blowing it off.
I need a good explanation for the blood, it is NOT normal and with my history must be taken seriously.
While all this is going on it is time to deal with the other issues and stop accepting it as FM as FM does NOT progress.
Since both MS and FM are diagnosed by eliminating other issues I need that to in fact be done.

Does this sound unreasonable?

[Scott1]

Hi,

If you are passing blood you need to have your hemoglobin count done. That can tell if you are carrying enough oxygen to maintain health. If your problem was a burst ulcer they would be all over you. You need to change doctors. At a minimum, go to a hospital outpatients and tell them you are passing blood. It is not something to ignore and is a clear indicator that something is not right. Forget the MS stuff for now. You need a colonoscopy and a thorough review which it does not sound like you have got. Your one question that you need answered is "why am I passing blood?"

Regards,

Regards,

[LizardKing]

Hi,

If you are passing blood you need to have your hemoglobin count done. That can tell if you are carrying enough oxygen to maintain health. If your problem was a burst ulcer they would be all over you. You need to change doctors. At a minimum, go to a hospital outpatients and tell them you are passing blood. It is not something to ignore and is a clear indicator that something is not right. Forget the MS stuff for now. You need a colonoscopy and a thorough review which it does not sound like you have got. Your one question that you need answered is "why am I passing blood?"

Regards,

Regards,

I am pissing blood, not passing blood and had that for 5 years before I had bladder cancer found.
So in spite of losing my bladder in 2013 I am back to where I was before pissing blood every couple of months.
I went to the emergency room twice with bloody urine this year and one of the times I had a fever.
Also saw my cancer urologist who blew it off and straight up told me it was nothing.
I finally cussed him out really good since I have been pissing blood on and off since early 2015
and asked multiple times for answers from him. He has none.
This was at the end of March and a lot happened since: got insurance and working on getting
urologist worth a damn and have appt. next month.
At the end of January, a couple weeks before a bloody urine incident it seems like I had an "attack" that caused
serious ear ringing, pruritis, much increased tingling in left hand and both feet and some in my right hand, and dizzy spells with vertigo.
That really doesn't sound like fibromyalgia and my research lead me here.
I am doing the best I can but frankly I am having to do the doctor's job a lot of the time and
I am sick and tired of it and hate doctors for the most part.

What I need is a proper work up for the bloody urine and an explanation for it AND a proper workup
and diagnosis for what could very likely be MS.

BOTH!

and frankly the MS workup is about a quarter century overdue...
I have insurance now and will use it.
Like the cancer, I am now going to be like a dog with a bone and get the answers I need even if I have to
keep changing doctors and what's ironic about the whole thing is -I- and the one insisting on PROOF
before diagnosis while the doctor's are pulling opinions out their butts w/o any evidence to back it up with.

[NHE]

Yes, you need a new doctor. Urinating blood is never normal. The suggestion that it is by your current doctor is ridiculous.

[Scott1]

Oh yes. Just change doctors. Your treatment is ridiculous. Remember losing blood like that will make you very fatigued all by itself.

Try a nephrologist - http://www.cnmgonline.com/docs/biu/blood-in-urine.php

Regards,

[LizardKing]

Oh yes. Just change doctors. Your treatment is ridiculous. Remember losing blood like that will make you very fatigued all by itself.

Try a nephrologist - http://www.cnmgonline.com/docs/biu/blood-in-urine.php

Regards,

I am in the process of doing that and have an appt. with a new urologist in a week but have been working on this since MARCH!
So now I am at 1.5 years of bloody urine. I am not happy and since I HAD bladder cancer can't fail to see that the likelyhood
of it being from cancer is very high.
Blood loss will only add to the fatigue I feel, along with the sleep apnea and other issues I have though it is mostly microscopic with periods of heavy visible blood.
Shame my urologist didn't do urinalysis the past year and half to show I had microscopic blood that whole time...

Ridiculous?
At this point I feel it is criminal and you can image my last meeting with that doctor was not at all pleasant for him.

So while this IS a huge issue I need to take care of, so is a proper diagnosis of what I strongly suspect is MS and I have suffered from for almost 25 years.
If it is MS it would be nice to get some treatment before I end up wheelchair bound, lose my sight, or something worse.
Seems to be pretty hard to get a doctor to DO THEIR JOB these days.

[lyndacarol]

… have an appt. with a new urologist in a week but have been working on this since MARCH!
So now I am at 1.5 years of bloody urine. I am not happy and since I HAD bladder cancer can't fail to see that the likelyhood
of it being from cancer is very high.
Blood loss will only add to the fatigue I feel, along with the sleep apnea and other issues I have though it is mostly microscopic with periods of heavy visible blood.
Shame my urologist didn't do urinalysis the past year and half to show I had microscopic blood that whole time...

Ridiculous?
At this point I feel it is criminal and you can image my last meeting with that doctor was not at all pleasant for him.

So while this IS a huge issue I need to take care of, so is a proper diagnosis of what I strongly suspect is MS and I have suffered from for almost 25 years.
If it is MS it would be nice to get some treatment before I end up wheelchair bound, lose my sight, or something worse.
Seems to be pretty hard to get a doctor to DO THEIR JOB these days.

Sleep apnea… another reason to request the vitamin D test (the "25-hydroxy D" test) from your new urologist next week (or from your GP with a phone call to him anytime).

Is obstructive sleep apnea linked to low levels of vitamin D? (3/2016 (
http://www.clinicaladvisor.com/is-obstr ... le/483478/

"Vitamin D deficiency is linked to multiple diseases including psoriasis, chronic kidney disease, diabetes mellitus, asthma, periodontal disease, cardiovascular disease, schizophrenia, depression, and cancer. Now, researchers have shown a correlation between vitamin D deficiency and a higher rate of obstructive sleep apnea (OSA)."

One other way to do the vitamin D test is to order the 1-time test kit available from GrassrootsHealth (https://www.grassrootshealth.net/proj-welcome/?pr=95284) for $70 (this is a $65 fee for testing +$5 shipping) –in your home, it requires a finger prick for a a few drops of blood put on to the special blotter card and mailed back; results are sent out (by e-mail) within a week.

[ccbower88]

I know this isn't adding much to the conversation, but have you had your kidneys tested as a cause for the blood in your urine? I pass blood (visible often) and protein with my urine and after a kidney biopsy was told it was due to a thin basement membrane. Not sure if this info will be helpful, but I hope you can find some answers soon.

[LizardKing]

I know this isn't adding much to the conversation, but have you had your kidneys tested as a cause for the blood in your urine? I pass blood (visible often) and protein with my urine and after a kidney biopsy was told it was due to a thin basement membrane. Not sure if this info will be helpful, but I hope you can find some answers soon.

No, I haven't.
I had appt with new urologist next week and hope they will do some tests and get me some answers.
Last one was not interested in doing anything other than more CT scans and a repeat of a camera into the ileal conduit.
Considering how long I had cancer for before having my bladder removed and that it took 18 months for the bleeding to start again,
the likelihood of it being cancer again is very high IMHO.