How does anyone ever see this post? Is there anything I can do that would bring attn to it?
There must not be enough people on this site to get any viewers, or comments.
Hi, Carl. You're right that there aren't many people answering questions here. But I'll try to see if I can be of any help.
First off, do you have copies of any pathology reports concerning the lipomas that were removed? Does anything mention these terms:
lipofibromatous hamartoma of nerves
My guess for now is that is what you have, since most types of lipoma do not affect nerves.
If you don't have copies, I'd suggest that the best way that you have to start finding out what's wrong is to get them. If you have a rare condition, your best bet of finding an answer sometimes lies is in researching on your own. A doc doesn't really have time usually to track down mystery conditions that they haven't seen before. You might have an atypical case of neural fibrolipoma.
It might even be possible to find out by making some phone calls and ending up by speaking to the pathologist. I have some free time at the moment and would be happy to try and help, but that could change any day.
If it were me, I'd also avoid any more surgeries for now, since the removal of these lipomas might cause irreversible problems.
Did you first have these lipomas starting decades ago?
I'd wonder if the neurologist you'd seen had considered neural fibrolipoma and why she had rejected that diagnosis.
the glucose tolerance test eliminated neuropathy from diabetes / glycation
the "head rush" when rising sounds like orthostatic hypotension, which likely isn't related to the main problem. Still, I'd absolutely get a home BP machine. If you don't have one yet, I have ideas on which kind to get.
During your stress test, it's very possible that the cuff was pressing on yet another lipoma that exists there, and that caused the pain. They could have simply used your other arm, especially since pain will increase BP.
You possibly have those lipomas throughout, and also might be experiencing lots of 'referred pain' phenomena from them.
Btw, lipomas are fatty tumors, but do not occur because a person is fat. I'd guess that your stress test was good, so that's a plus - and you are likely not overweight.
A lipoma is not related at all to lymphoma, which is a cancer of lymphocytes.
Also, please answer: Did you first have these lipomas starting decades ago?
Hey Ken, thank you for responding.
I did not get a copy of the pathology report on the lypomas. The surgeon told me before surgery that he would only have one checked by the pathologist. He said the one tested was a normal lypoma that wasn't cancerous.
I'll call and get it.
I'm fifty-seven, and first noticed the lypomas in my early twenties. I went to a doctor back then and he said to never worry about them, which I haven't until the pain started in my chest.
It's gotten to the point where touching the lypomas on my left arm or on my left side, including the ones on my back causes pain. It's like they've taken on a life of their own.
Recently, I got a copy of the dictation from the MS Specialist. She listed two potential issues: Small vessel diseases and she said that prolongation of motor F waves raised the question of an inflammatory demyelinating polyneuropaty. (the last from an EMG, I brought with me on a disc which was performed in November)
FYI: 3-25-11, I had surgery removing the left half of my thyroid because they said I had a 50% chance of having thyroid cancer. Pathology report on that was negative for cancer. Of course, this discovered while testing why the neuropathy.
I have more info, will do another comment.
My blood pressure is usually good when checked. I did plasma donations and during that time, blood pressure was usually in range. (have seen more of Doctors than I would have ever thought possible). Recent blood pressure checks have all been normal.
The swimming sensation in my head, (I have other descriptors, none accurate, but the one about getting up off the floor is the closest,) if I can keep my arm off my side goes away.
Usually when I wake up, these symptoms are gone. If I can keep my arm above my head, they don't return. It doesn't hurt to put my arm down, but once it's been down, my upper arm starts to hurt and the 'referred pain' goes into lipomas on my left back.
Ken, you are correct, the stress test was normal and I am not over weight. (I would believe this lessens the likelyhood of small vessel disease) I was born breach and doctors used forceps, so the lesions on my brain, (none on the spine,) could be from that.
I used to smoke, just over a pack a day, quit now, over a year ago, and had quit once before for seven years. Lesions my the brain could be from that.
Blood test: two things out of range. Ferritin, in sept 2010 (585), nov 2010 (615), (started drinking over 100 oz of green tea a day (my brew)) and mar 2011 (519)
Sept checked for Ni: (have exposer to it at work) It was found in my system, but there's nothing that says this caused a problem. The neurologist made mention it in her dictation but had nothing else to say.
Have more info, will leave another comment
Ken, is it possible that free radical activity, (because of the high ferritin,) could cause lesions on the brain?
I have to leave for a while.I'll be back.
Wow, you've got a lot going on, Carl.
When you say ferritin + brain, I think immediately of how melatonin can be used to lessen the damage that happens after a stroke when blood flow is restored (called 'reperfusion injury'). Melatonin is an anti-oxidant, and so counteracts the anti-oxidants produced during hypoxia. I suppose you know that some of the worst radicals are iron-based. Melatonin is the hormone which is released most during sleep.
And your symptoms are better after sleeping. Maybe that's an avenue to look into.
Also a quick question: as part of your stress test, did you get Cardiolite / sestamibi -- which would be the nuclear profusion test that's used to look for small vessel disease in cardiac vessels?
Sorry that I'd missed you originally saying that the lipomas began in your twenties, and I made you repeat that. I noticed it now when re-reading.
What do you think about picking up some melatonin over the weekend, to see if that helps any? I don't know of any danger (unless greatly overdosed), it is commonly available where vitamins are sold and it's used as a sleep aid by many. That seems like a prudent experiment. Maybe it doesn't have a good chance of success but it's something to maybe try.
Also, I suppose you are using tea to chelate iron. Then how are your other minerals? E.g. is magnesium now low?
Let me give you these two refs on Neural Fibrolipoma, to digest:
I guess you are some kind of engineer, and you can absorb these kind of things. Note they are both from pathology. It's a rare thing. Both for some reason are India related, I wonder if they have more of that over there - which would indicate genetics or maybe some food/environment variable.
Shutting down now, though this is really an interesting case, so write back. Good luck, Carl.
P.S. One thing I've come to believe is that deep down the patient aka person always has a a good idea deep down of what is wrong. Your native impressions are probably a very good indication. The sub or un-conscious somehow knows. Combine that with an analytical mind and that can go a long way.
lipofibromatous hamartoma of nerves
My guess for now is that is what you have, since most types of lipoma do not affect nerves<<
Ken, I looked into these using the net and none seem to fit what's going on with me. An observation: You said lipomas do not affect the nerves. But what about the nerves, (or something,) affecting the lipomas? Or something affecting both nerves and lipomas?
>>A lipoma is not related at all to lymphoma, which is a cancer of lymphocytes.<<
I know the lymph system is located throughout your body. On my follow up visit to the surgeon I asked whether I might have a problem with my lymph nodes. He said I showed no evidence of any such thing. I don't know how he would know per say, but when scheduling surgery with his scheduler, she said her daughter worked at the hospital and said he was the go to guy other doctors consulted with.
>>During your stress test, it's very possible that the cuff was pressing on yet another lipoma that exists there, and that caused the pain.<<
I agree, I just don't know why these turned painful when they never have been.
>>You possibly have those lipomas throughout,<>and also might be experiencing lots of 'referred pain' phenomena from them.<<
The pain doesn't travel around. and once the pain is gone, it doesn't return without manual stimulation, like having my arm down where lipomas becomes compressed.
The feeling in my head also returns with the manual stimulation of the lipomas.
>>did you get Cardiolite / sestamibi -- which would be the nuclear profusion test that's used to look for small vessel disease in cardiac vessels<<
If this is injected or ingested, the answer is no. Otherwise I wouldn't know. But I never heard anyone make mention of it.
>>some of the worst radicals are iron-based<<
Doctors don't seem concerned with the ferritin levels, even though it's over the range. I gathered during visits, until ferritin is over 1000, they don't treat it.
Iron level is within range.
But, I read on the net, one cause of high ferritin is cancer. CT Scans on both brain and chest show no evidence of any other masses than the ones found on my left thyroid, which was removed 3-25-
>>What do you think about picking up some melatonin over the weekend<<
I generally don't take anything. That way if you ever need to, what you do take will work for you. And with the green tea, (I know that's subjective,) already lowering the ferritin level, probably not necessay.
>>I guess you are some kind of engineer<<
Not an engineer. But that dosen't keep me from trying to figure this out.
My wife suggested the possibility of an inner ear problem.
Since I've been off for the last two weeks after surgery, I've had time to check the web and was amazed by how closely most of the symptoms for an inner ear problem correspond to what was listed on two of these sites.
These symptoms listed on both of these sites I have. There are other symptoms listed, which I don't have.
Blurry or Double vision
Sensitivity to light
Tingling sensation on the top of the head (my swimming, or head rush, which doesn't stop)
Heat and cold intolerance. (which currently is most related to heat)
Excess sugar can trigger dizziness (this confused me for a long time concerning the position of my arm. and still may be a factor)
Confusion (only when my head is swimming)
anxiety (only when my head is swimming and I referred to my anxiety as sever bouts of nostalgia)
These are Inner ear disease listed: Infections, also called as otitis interna or labyrinthitis, autoimmune inner ear disease, acoustic neuroma, Meniere’s disease, ototoxicity, perilymph fistula, migraine associated vertigo, silent seizures and allergies.
As of yet, when I look each of these up on the net to see what they entail, I don't find the same range of symptoms listed on those websites as listed on the above sites.
I do have a feeling that what's going on in my head is related to pressure against a nerve. It's why I listed the neck exercise I used to do that brought on the first glimmer of what I believe is nothing more than a worsening of that feeling.
This is something I used to think:
It is possible that just being up and about may be putting pressure on my nerves in the brain stem area. Or maybe a lipoma deeper in my neck that I can't feel.
One thing I've forgotten until now is that I often get a feeling of pressure on the back of my eyes and they get bloodshot if the swimming in my head goes on for a while. (something that happens when I'm working)
Ken, I want to thank you for taking the time. it is very much appreciated.
My Prayer is that somehow, I can get the right/correct/knowing pair of eyes on this where some Doctor somewhere goes “Oh, Yeah, I know what that is.” And the second half of that prayer is my condition can be easily treated for a full and complete recovery.
- Neural fibrolipoma: these two refs seemed to me to be very much like what you described:
why do you say they don't fit?
>> "But what about the nerves, (or something,) affecting the lipomas? Or something affecting both nerves and lipomas?"
yes, going by logic that seems the reasonable path to follow. E.g., is something damaging your nerves, and the lipomas are your system's counter to that damage (as e.g. atherosclerosis is a response to arterial injury). Or is some unknown process creating lipomas and nerve damage.
- lymph nodes generally show problems when they are enlarged or painful or hard
>> "I agree, I just don't know why these [lipomas] turned painful when they never have been."
were they ever pressed on so hard before? E.g., if pain and stress make BP rise, then the cuff must inflate to greater pressure.
>> "The feeling in my head also returns with the manual stimulation of the lipomas."
that sounds like a very big clue. It also then tends to argue against ear infection, and against the big three reasons for light-headedness: hypotension, hypoglycemia and hypoxia
with sestamibi, they might have showed you in realtime that your heart was lighting up on a monitor. You can find videos (even on youtube)
- ferritin, being the 'storage form of iron', can be one way while the hemoglobin in RBCs can be another. E.g., to test Mg, you need to test the content in RBCs because the serum level doesn't tell much. That aside, do you restrict iron intake? You can't make iron, you have to eat it - like all minerals. Do you have any tests when your ferritin was okay? Why was it tested anyway? Were they looking for low iron as the cause of light-headedness (which creates hypoxia)?
High ferritin from cancer would, I guess, only relate to liver cancer. Would "non-alcoholic fatty liver disease" affect ferritin? Yes, so that's a whole other avenue to investigate. http://www.ncbi.nlm.nih.gov/pubmed/15544735
Btw, do you consume lots of sugar/fructose? If so, I'd stop immediately.
- melatonin: do you sleep 8 hours? if not, I'd try it and see if you are better for longer in the morning
- neck exercise: if not yet, get aquainted with the Law of Parsimony aka Occham's Razor aka Lloyd Morgan's Canon. So then we'd ask, how do the (possinbly neurofribo) lipomas and brain lesion sreaklte to the possible cervical injury? Maybe the pre-existing internal situation made you more susceptible to cervical neural injury? Maybe.
>> "It is possible that just being up and about may be putting pressure on my nerves in the brain stem area"
Or being upright reduces intracranial BP. That's why I'd buy or borrow a monitor, lay dowen for 5 minutes while cuff is on but not inflated, then push the button and stand. BP can change every moment, btw. Having yours taken at the doc office doesn't tell the whole story. There is even a trend toward home monitoring for that reason. At the least, you eliminate orthostatic hypotension as a cause.
-bloodshot eyes = probably vasodilation, & vasodilation can create hypotension (as in shock).
- btw, what happens if you stand like a soldier for 15 minutes? dizziness? IOW, is *standing* the reason why you experience symptoms at work? Maybe sleep helps mainly because you are lying down and getting more O2 in the brain.
Could any possible ear involvement be because of nerves in the ear(s)?
Can we eliminate the mysterious Lyme Disease as possible in your state of MI?
Are you getting poisoned by something at work? E.g., are you better after 2 weeks away from there.
Carl, I hope these scattered observations might be of some help. I think that if you persevere then you will overcome the problem. Along the way you'll become a near expert in many health matters. You'll need a doc to write orders for tests, but you maybe can do much or most of the diagnosis on your own.
At this point, the biggest clue to me is: >> "The feeling in my head also returns with the manual stimulation of the lipomas." I'll have to mull that... what's the possible mechanism?
Also, is iron related to demyelination? Maybe so, though I don't have time to scan through this article right now:
"Relationship of Iron to Oligodendrocytes and Myelination"
Now that's what we'd call a 'non-authoritative source' because it's just a person's personal webspace. But it looks like a faithful reproduction of a somewhat authoritative source. It's not recent, so another step would be to find followups... say at pubmed if this review was published.
Ken, I'll print this and take it to work with me tomorrow. (Lots of info, and I start very early in the morning)
>>"non-alcoholic fatty liver disease"<>At this point, the biggest clue to me is: >> "The feeling in my head also returns with the manual stimulation of the lipomas." I'll have to mull that... what's the possible mechanism?<<
I'll explain the manual stimulation to the Doctor in just those words, as saying I have to keep my arm up off my side doesn't draw the same picture. (in my mind it did)
New info: I don't know when, and it's been a long time, I stopped sleeping on my left side. I don't remember there being any type of pain keeping me from doing so, I just remember being more comfortable on my right side.
So this probably has been developing slowly, but surely and progressively. If I had continued sleeping on my left side, I might have sought medical help sooner(?)
Maybe I have a lipoma lying next to a nerve that's in a position which causes the nerve to stretch or kink with the use of my arm?
Thanks again for your time. You have been so helpful.
A few more.
in trying to unify everything: you had thyroid resection because scans showed some nodules/lesions that falsely appeared to be cancerous. Did the thyroid pathology report afterward say "fibrotic"? Did the same process cause both the lipomas and thyroid nodules? If so, that might cause problems anywhere. E.g. do you have this fibrotic process ongoing in your liver which is causing liver destruction and then release of ferritin?
Lipoma associated with use of left arm? That seem very possible at this point. Maybe a corticosteroid injection can be tried one day to reduce it.
Btw, ferritin is not likely IMO to cause actual brain lesions, but can cause the microvascular disease.
So, the unifying theory for today is that some unknown fibrotic process causes development of all the lesions - brain, neural lipomas, liver, thyroid. The cause of the lesions might be genetic, possibly aggravated by something environmental. These lesions then cause all your diverse symptoms. So the feelings in the head, or the numbness in extremities, and the high ferritin, all result from the lesions.The high ferritin then causes the microvascular damage.
It's a theory anyway.
This page says: "Lesser levels of iron overload, even in individuals whose ferritin and/or transferrin saturation levels range only toward the upper end of normal laboratory ranges, can result in free (or non-transferrin bound) iron that will catalyze the cycling of free radicals resulting in the tissue damage often associated with chronic diseases. This iron-mediated disease process is associated with iron levels well below those observed in hemochromatosis and has been implicated in multiple metabolic disorders..."
Note that the site has an associated discussion group.
Hey Ken, I won't get through all of this tonight, but will answer what I can.
>>Did the thyroid pathology report afterward say "fibrotic"?<<
The FNA results said Follicular cells.
Pathology (don't have a copy, just repeating what the Surgeon said) Adenomatous Hyperplasia
I don't know how this went from Follicular cells to Adenomatous Hyperplasia, although the Surgeon did try to explain.