I've been reading this Forum for a while, so I guess I should introduce myself.
My name's Mar (as in The Sea/Ocean), and am a 52 year old female. I've worked in the IT profession for 25 years, recently had to go on Medical Leave, and then was laid off. I've been having symptoms, that sound like they could be MS for the last 20 years, on and off.
Recently severe fatigue, and cognitive problems have been kicking my butt, again, along with some bizarre breathing issue( I can barely breath when I lie down, and have to sleep sitting up. Night time is a long series of waking up, gasping for breath, because I've slid down. propping myself back up, falling asleep, sliding down, waking up... ad nauseum).
So, I've gone from being used to working 70 hours per week, to barely being able to work 4 hours per day, and having to stop 2-3 times to make the bed...
My Family Doctor blamed it all on Acid Reflux. I saw a Pulmonologist, who originally thought it was asthma, then a restrictive lung disease... but he's cleared me. A cardiologist, who thinks its Mitral Valve Prolapse Syndrome with Dyautonomia (which is likely the issue)
Saw a Neurologist, who thinks it could be MS. This morning I had an EEG and an MRI. I'm really not impressed with the quality of the MRIs done. You'd think if a specialist, like a Neurologist, suspected the possibility of MS, they'd follow the MS protocol. Nuh Uh! (ok, I'll stop complaining).
Anyway. I'd like to thank everyone for their input into this Group. I've learned so much reading this Forum.
You really have to be proactive with neurologists - even so-called MS specialists. Last time I got an MRI of the spine, the guy scheduled me for an open MRI at 1.0 Tesla, which is just not high enough to catch spinal lesions.
Now it's true that the better the programming, the better the pictures, even if it's just 1.5 Tesla. But this particular machine - well, it crashed twice during the scans. Maybe it was great ten years ago, but I think it's a little behind the times.
Welcome to the forum here.... coming out of the shadows wasn't so hard, was it
Acid reflux seems to be an easy answer for many doctors - my GP and Cardio both had me tested for it in all shapes and sizes, and that was after my heart attack. I went along with the tests, figuring that would eliminate those doubts and questions and allow us to move on.
It sounds like each specialist is finding their own dx, according to their skill set. It reminds me of an old saying - if you are a hammer, you only look for nails.
I'm sorry to hear about the job and the sleep problems too. Have you had a sleep evaluation done? It might be worth it for the evaluation - sleep problems is a big issue for MS patients.
I, too, am surprised that a neurologist who is thinking "MS" did not specify using the protocol. It's a "protocol" for a reason.
What did your sleep study show?
It seems that neuros in general dismiss the idea that autonomic damage occurs in MS, but it is EASY to find the opposite in the literature. MS is well-known to cause autonomic dysfunction. Here is a quick list of articles, studies and abstracts that deal with the ways that MS affects various autonomic functions:
We should explore this topic. A lot of people here have problems with cardiovascular dysfunction, arrhythmias, sweating, urinary problems, bowel dysfunction, pulmonary problems etc.
THE AUTONOMIC NERVOUS SYSTEMS (this is a beginning health page)
I did some research on this topic and found that orthostatic hypotension (that is low blood pressure when becoming upsight or standing up) is quite common in MS. Although my MS neuro stated that the autonomic nervous systeim is rarely involved in MS, the medical literature says otherwise. It is common, and is certainly commonly mentioned here. Being mentioned here is not scientific proof of anything, but it can be taken as suggestive.
There are other "nervous systems" besides the central nervous system and the peripheral nervous system. These are the "autonomic" nervous systems, because they deal with the behavior of our body, especially our organs in an automated way. The Autonomic Nervous Systems are usually thought of as part of the Peripheral Nervous Systems, but they have important nerve origins in the Central Nervous System.
The Sympathetic Nervous System
The first is the sympathetic nervous system. This is the system that is responsible for (among other things), the "fight or flight "response with constriction of the capillaries to the skin, increasing the heart beat, decrease the motility of the colon, increase pupil dilatation, increase sweating. The deep muscles (one's needed to fight or fly) have increased blood flow to them. The sympathetic nerve fibers also increase the diameter of the bronchial passages. The SMS involves two main neurotransmittors, adrenaline and acetylcholine. The SMS arises in the spinal cord, beginning at the first thoracic segment and ending near the second lumbar segment. It is important to note here that the actual spinal cord ends at the end of the "thoracic" spinal cord, but the cord itself has segments near the end that "serve" and exit through the lumbar vertebrae. The sympathetic nerve fibers are myelinated as they leave the spinal cord.
When a person has been lying down for a while, the blood vessels, the veins, in the limbs relax and hold more blood. When you stand up suddenly the blood can "pool" in these relaxed and widened blood vessels. The SMS is responsible for constricting the vessels so that the blood is pushed up and can maintain the blood pressure. If it is slow in constricting you may feel the familiar "head rush" of suddenly standing up or may actually faint.
THE PARASYMPATHETIC NERVOUS SYSTEM
The next system in the Autonomic Nervous System is the Parasympathetic Nervous System ("Para" meaning "beside"). This one has many opposite actions to the Sympathetic System, but it functions more to complement the SMS rather than to just oppose it. By a method of give and take the two systems allow exquisite fine tuning of the many functions of the body. You could say that the largest purpose of the PSNS is "rest and digest." The PSNS accomplishes its work in the body through it's actions on smooth muscle, The PSNS slows the heart rate, increases salivation, peristalsis of the intestines, stimulates the digestive glands, increases tearing, dilates the large blood vessels, and controls the automatic parts of urination. The PSNS reacts slowly unlike the Sympathetic Nervous System. The mechanism of fainting involves actions of the parasympathetic system. The blood vessels dilate causing the lower limbs to collect large amount of blood - which lowers the blood pressure and deprives the brain of enough oxygen - and the heart slows and you lose consciousness. This accomplishes the purpose of fainting - you end up on the ground. Typically, as soon as you are horizontal, the blood pressure comes back up. All of this is mediated by way of the 10th Cranial Nerve, the Vagus Nerve. The Vagus nerve is largely a part of the parasympathetic nervous system.
A large number of the nerve fibers in the autonomic nervous system are UNmyelinated. I think it is because of this that neurologists seem to be reluctant to admit that MS can involve autonomic functions like orthostatic hypotension, sweating abnormalities, and cardiac arrhythmias. At this point I don't know the answers to this question.
Mar: Welcome to the forum! I'm glad you brought up the dysautonomia, as my cardiologist and other docs were scratching their heads about my symptoms. However, my local neuro has mentioned it to me previously.
can a heart problem cause similsr issues as ms. because my mri showed spots in my brain so the doc ordered an eco cardio gram and a lumbar puncture. i have spasms and it often affects my speech could a heart problem really do stuff like that?
Most people that have a prolapsed mitral valve, have few or no symptoms. Mine was discovered years ago, due to an Insurance Medical Exam. Both the heart murmurs (the sound of the blood back flowing through the valve), and the actual prolapse itself, has gone away(sounds weird, but my Cardiologist says, that it can correct itself, and may or may not come back). Some people, do, however have symptoms associated with prolapsed mitral valves, and its referred to as MVPS (Mitral Valve Prolapse Syndrome).
chronically cold hands and feet
gastrointestinal stomach disturbances
problems with memory or a feeling of fogginess
inability to concentrate
numbness or tingling of the arms or legs
arm, back, or shoulder discomfort
lump in the throat
These symptoms can be helped by using a beta blocker.
Sooo... there's alot in common between the MVPS and MS symptoms (I happen to have everyone, except the panic attacks).
For me, so far, the beta blocker is helping a little, but not making a big difference (I need to take it anyways, to slow down an aortic aneurysm).
MVP is a very common heart problem among women and is also sometimes referred to as a tall woman's disease. It seems to affect taller women - go figure!
The thing about MVP is you can outgrow it - that sounds weird, but many times it will resolve on its own.
Mar, are you also dealing with an AA? Have they discussed surgical repair?
I am a heart attack survivor, that is why the interest in this topic. I was diagnosed with MVP when I was about 27 or so - it resolved on its own by the time I was 35. I had the HA when I was 54, and it was not related to the MVP. MVP rarely causes an HA. I have an aunt who has had several AAs to deal with as well.
When they were trying to discover the cause of my breathing issues, they did a CAT scan and discovered an aneurysm, just starting, in my right ascending aorta just before the aortic arch. They'll wait till it gets larger, before surgery is an option (the risks of the surgery needs to out weigh the risks of the aneurysm bursting. At this point in time there's like a 3% chance of death from the aneurysm, but an 8% chance of death from surgery).
The Pulmonologist was quite cavalier about it and wasn't even going to mention it (I guess he figured he'd just monitor it, until it was time to tell me). Fortunately, I went and saw a Cardiologist, who put me on a beta-blocker(ACE Inhibitors, and ARRBs, can be a better choice, but my blood pressure jumps all over the place, and they couldn't be used). The beta-blocker will slow its rate of growth down(hopefully). Maybe I can avoid surgery, or maybe they'll finally advance beyond the current technique of cutting out the segment of the aorta that contains the aneurysm, and replacing it with a dacron hose. There's an experimental technique that leaves the aorta intact, and over sews a patch, to strength the aorta. It markedly cuts down on deaths, strokes, and other complications due to cutting in half, the time you need to be on a heart lung machine.
thank you for all the information it opened my eyes quite a bit. i guess i need to look at both test seriously. i hope all come back well. i hope that you are able to get the answers and friendships you`d like from this forum. :) giggling88
Quix, I'm very interested in this topic, as I not only have that phlebitis in my left leg, but I also have chronically low blood pressure and get short of breath when I stand up. (Although this has mostly remitted.)
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