Look, I need help, please. MS?

[marlanarich]

Age: 20
Weight: 101lbs.
Height: 5' 4'
Sex: Female
Smoker/ Morning Coffee drinker /Alcohol intolerant

Fatigue: My fatigue has overrun my life. This started when I was 18 and continued to get worse with other symptoms. I am almost 21 and I have trouble getting up off the floor when I am having a "flare up" of my symptoms, mostly related to this weird tightness and aching pain I have starting in the back of my neck which I'll explain further down. I feel like I have the flu all the time. I feel sick and tired and I can barely hold myself up to satisfy my husband. Sometimes my body gets really weak and achy and I have to push myself out of my chair at work.

Other Chronic illnesses (worst to least): Endometriosis, IBS w/C, Reactive Hypoglycemia, Severe everyday Allergies, GERD, Asthma. All since birth except for Reactive Hypoglycemia 2013 and Endo which started in October 2014(19yo).

Neuropathy: Recently diagnosed with mild neuropathy. It started with a random burning pain in various small patches of my body all over which come and go sporadically. In my knee I had a burning pain one day, a stabbing pain the next, and a really cold patch later that day (Not just feeling, I mean physically ice cold when it shouldn't have been).

Temp Control: I feel hot/cold and have hot flashes during a "flare up" of whatever this is and then I turn the room temp 2 degrees F and I'm freezing. I cannot stand the heat. Can't do it. Had a heat stroke a few months ago which of course after that, my symptoms got indefinitely worse.

Cognitive Fuction: Declined like my debit card the day before I get paid. I use to be so smart, so sharp and keen, up until about a year ago. My IQ at 16 was 126. I feel stupid now, cant think quite as fast and I have a lot of those "du-uuhhhhh?" moments now. Sometimes it's hard to walk straight or walk at all or put my hand in the right place where I want it to go. I can walk, yeah, but not easily; my body hurts and gets too weak sometimes. And during that "mild heatstroke", I couldn't get up out of my car. Period. My speech rolls over itself and blurrs together sometimes and I'll say a completely different word than what I meant to say. Difference between paperwork and pineapple. One time my husband screamed at me "I can't understand a word you're saying; you're slurring your words!", scared the crap out of me cause I had no idea that I was doing that.

WEIRD PAIN w/ photophobia: I feel an unusual tightness and stiffness in the back of my neck accompanied by a dull ache that makes me almost cringe, travelling down my spine and branches out through the back of my shoulders above my shoulder blades and down my arms. The weird cringing ache feeling feels like in follows up over my head and is greatly affected by sunlight (photophobia) and the sunlight makes me cringe and want to crawl into a dark hole and nap for a while. The sunlight affects me the most and only bothers me when I have the pain in my neck and back. When there is no pain, sunlight in enjoyable. I feel sore and tired down my shoulders and my arms and it hurts to lift them when I feel like this. I went a week recently without feeling like this which was great, but of course as soon as I said something, it came back with a vengeance. Lasting hours to days and will usually hit in a jiff early afternoon and start to fade through the evening. But when it lasts days, the other symptoms are milder.

Swelling: My abdomen swells and bloats up when I feel like this. When I eat even a very small amount or none at all sometimes, my left side just under my ribcage will swell to the point where I sit sideways and it hurts, can barely move, I feel like it's either my spleen or pancreas cause my stomach isn't full at that time. I've had co-workers ask my if I'm pregnant but of course that's another symptom.

Infertility: Had an excruciating miscarriage at 9weeks (molar/blighted ovum) after never being able to get pregnant which began the onset of my Endo. The pregnancy was brought on by stopping Ortho Tricyclen Lo after a month of use. Since, I've had 3 early miscarriages (6weeks) and am still unable to carry a child and am no longer becoming pregnant. Been trying for 2 1/2 years now. Still before then, played with fire, never got pregnant.

Help?!

-Marlana

[Echo2099]

Marlana,

It sounds like you have really been going thru a lot for someone so young! Sorry to hear things have been so tough for you.

Unfortunately, no one here can tell you if you have MS or what else may be going on.

Do you have a primary care physician that you can sit down and have a heart-to-heart talk with? That might be the first place to start.

It sounds like you may need to see a neurologist, one that deals with MS patients and general neurology. Perhaps a gastroenterologist would also be a good idea due to your stomach issues.

Talk with your primary care doctor and let him/her know your concerns and symptoms. If you don't get any satisfaction for him/her, find a new doctor!

I hope you can find some answers and relief very soon!

[jreagan70]

Hi marlanarich:

You have a complicated health history. Based on how you've described your health issues, your existing issues are more likely to be the cause(s) of your symptoms than MS.

Your infertility/endometriosis and abdominal swelling have nothing to do with MS. Fatigue and cognitive dysfunction are nonspecific symptoms with may possible causes. The way you've described them, they could be due to the effects of all of your existing health issues. It's not logical or wise to completely disregard a group of significant other health issues as the cause of fatigue and cognitive dysfunction and start looking to blame them on a cause, like MS, that you currently have no evidence of having. It seems like everyone who has health conditions that cause them not to feel well experiences fatigue and cognitive fog.

If you want to look for a cause, the possibilities have to include Chronic Fatigue Syndrome, which has symptoms and presentations that are more in line with what you're experiencing than MS does.

Neuropathy can be central or peripheral, and you didn't say which kind you've been diagnosed with. MS is a disease of the central nervous system; peripheral neuropathy would not be due to MS. Symptoms from MS don't tend to come and go sporadically, striking randomly, bodywide. Some of your existing health issues can cause that.

Visual issues caused by MS don't occur only along with other symptoms. They don't occur only along with neck and back pain, since there are no visual connections outside the head itself. That kind of connection would have to be caused by a different condition.

The heat sensitivity that can occur with MS is not the same as heat stroke. Based on your description, you may, in fact, have had heat stroke, which should not be confused with MS.

Many conditions share the same symptoms, which is why no disease can be diagnosed based only on symptoms. And many of your symptoms don't even sound like symptoms common to MS.

You haven't said that you had any neurological tests at all. If you'd like to be worked up for MS, you MUST be examined by a neurologist and have have the battery of tests used for the diagnosis of MS. You need a complete physical neurological exam and, at a minimum, MRIs of your brain done with an MS protocol. Your neurologist may order evoked potentials tests, other nerve conduction tests, a lumbar puncture and/or spinal MRIs.

MS has specific diagnostic criteria that must be met. You can google the 2010 revision of the McDonald Diagnostic Criteria for MS. The criteria include the almost absolute necessity for brain lesions that are typical of MS. That bears repeating. Not just brain lesions, because may conditions can cause brain lesions, but lesions that are typical of MS.

There must be a minimum of two episodes of symptoms that are typical of demyelinating events. That bears repeating. Just any, non-specific symptoms don't count. Random pains are nonspecific and don't count. The symptoms must be typical of demyelinating events.

The symptoms of demyelinating events and MRI lesions must show separation in time and space.

And -- particularly important in the case of people like yourself who have complicated medical histories and many concurrent conditions -- ALL other possible causes of the signs and symptoms MUST be ruled out before a diagnosis of MS can be made. Just getting through the rule-outs can involve quite a lot of medical testing in addition to the MS-geared testing.

So until you have a complete workup by a neurologist, you can't do any more than speculate about MS. One place to start is to contact your local chapter of the National Multiple Sclerosis Society (you can search for them online) for a list of doctors in your area who are reported to be experienced with MS. These are not doctors they endorse, and the doctors on their list might not be outstanding, but it's a start.

You can also google Chronic Fatigue Syndrome organizations for names of doctors who can evaluate you for Chronic Fatigue Syndrome.

And finally, it would be beneficial if you can find a really good primary care physician who can help you to understand how all of your existing medical conditions are contributing to your symptoms. It might also be a good idea for you to talk with a mental health professional who can help you to determine why, in the presence of all of your health conditions and serious symptoms, you think that having a child is a good idea. If you think you feel bad now, having a child will make you realize what feeling bad from your health conditions really means.

From what you've described, you have a rough road ahead. I hope you can get the medical and mental health support you need.

[marlanarich]

In reply,

Hi marlanarich:

You have a complicated health history. Based on how you've described your health issues, your existing issues are more likely to be the cause(s) of your symptoms than MS.

Your infertility/endometriosis and abdominal swelling have nothing to do with MS. Fatigue and cognitive dysfunction are nonspecific symptoms with may possible causes. The way you've described them, they could be due to the effects of all of your existing health issues. It's not logical or wise to completely disregard a group of significant other health issues as the cause of fatigue and cognitive dysfunction and start looking to blame them on a cause, like MS, that you currently have no evidence of having. It seems like everyone who has health conditions that cause them not to feel well experiences fatigue and cognitive fog.

If you want to look for a cause, the possibilities have to include Chronic Fatigue Syndrome, which has symptoms and presentations that are more in line with what you're experiencing than MS does.

Neuropathy can be central or peripheral, and you didn't say which kind you've been diagnosed with. MS is a disease of the central nervous system; peripheral neuropathy would not be due to MS. Symptoms from MS don't tend to come and go sporadically, striking randomly, bodywide. Some of your existing health issues can cause that.

Visual issues caused by MS don't occur only along with other symptoms. They don't occur only along with neck and back pain, since there are no visual connections outside the head itself. That kind of connection would have to be caused by a different condition.

The heat sensitivity that can occur with MS is not the same as heat stroke. Based on your description, you may, in fact, have had heat stroke, which should not be confused with MS.

Many conditions share the same symptoms, which is why no disease can be diagnosed based only on symptoms. And many of your symptoms don't even sound like symptoms common to MS.

You haven't said that you had any neurological tests at all. If you'd like to be worked up for MS, you MUST be examined by a neurologist and have have the battery of tests used for the diagnosis of MS. You need a complete physical neurological exam and, at a minimum, MRIs of your brain done with an MS protocol. Your neurologist may order evoked potentials tests, other nerve conduction tests, a lumbar puncture and/or spinal MRIs.

MS has specific diagnostic criteria that must be met. You can google the 2010 revision of the McDonald Diagnostic Criteria for MS. The criteria include the almost absolute necessity for brain lesions that are typical of MS. That bears repeating. Not just brain lesions, because may conditions can cause brain lesions, but lesions that are typical of MS.

There must be a minimum of two episodes of symptoms that are typical of demyelinating events. That bears repeating. Just any, non-specific symptoms don't count. Random pains are nonspecific and don't count. The symptoms must be typical of demyelinating events.

The symptoms of demyelinating events and MRI lesions must show separation in time and space.

And -- particularly important in the case of people like yourself who have complicated medical histories and many concurrent conditions -- ALL other possible causes of the signs and symptoms MUST be ruled out before a diagnosis of MS can be made. Just getting through the rule-outs can involve quite a lot of medical testing in addition to the MS-geared testing.

So until you have a complete workup by a neurologist, you can't do any more than speculate about MS. One place to start is to contact your local chapter of the National Multiple Sclerosis Society (you can search for them online) for a list of doctors in your area who are reported to be experienced with MS. These are not doctors they endorse, and the doctors on their list might not be outstanding, but it's a start.

You can also google Chronic Fatigue Syndrome organizations for names of doctors who can evaluate you for Chronic Fatigue Syndrome.

And finally, it would be beneficial if you can find a really good primary care physician who can help you to understand how all of your existing medical conditions are contributing to your symptoms. It might also be a good idea for you to talk with a mental health professional who can help you to determine why, in the presence of all of your health conditions and serious symptoms, you think that having a child is a good idea. If you think you feel bad now, having a child will make you realize what feeling bad from your health conditions really means.

From what you've described, you have a rough road ahead. I hope you can get the medical and mental health support you need.

I do know that the symptoms I have described are not caused by my current conditions because I've had those things my entire life without any serious problems outside of twice yearly sinus/brochial infections not being able to potty for a week. Unless the Endo has spread to various parts of my body I do not understand how those things can cause neuropathy, extreme fatigue, and the weird pain I have in my neck, head, shoulders, and back that correlates with my sensitivity to light which makes the pain worse. These things are all new and getting worse with time. I keep a small stash of prescription Ibuprofen and I had to take one yesterday which helped a lot but not fully with those symptoms. After the Ibuprofen, I was able to withstand the light better and the pain in my neck wasn't as bad. I am being driven mad trying to figure out the root cause of my symptoms so that it can be treated and I can go on to live a happy life. I do know very well that everybody looks at me like I'm crazy because a 20yo female shouldn't feel this way all the time. I rarely feel good and when I do, I use that time to clean. I just want to feel good again like I did when I was 16/17.

I have done extensive research for almost a year now. I have a theory that most people might be a little put off by but here it goes. These are messages I sent to my husband when coming on to this theory. No judging, it's just a theory. I am not a scientist or a doctor. This just stems from an idea after having a wth moment.

"I'm starting to think that there's something fishy going on with the fact that endometriosis has been around for centuries and still there's "no cure" but women can go through all of these super expensive surgeries and ivf and birth control pills being the main sell to women with endometriosis when in reality estrogen makes it worse to where you have to have the surgery like I did.


Just like there's "no cure for cancer" but they can go through chemo and transfusions amongst other expensive "treatments".
In reality, endometriosis is both an autoimmune and chronic inflammatory disease just like Multiple Sclerosis and Lupus. Only after birth control, miscarriage, and surgery do symptoms begin to affect the patient.


That's why they dont catch till later. And I dont believe the theory that endometrial implants are there before birth and that you're born with it. However, similar reproductive illnesses are said to be hereditary like endometriosis but I do not believe that its specific to the female reproductive system since men can get it too. I'm beginning to think that maybe its actually linked to a hereditary gene passed through families to both men and women that seems recessive in men because it affects women more because they have more endometrial tissue (which is a rapidly regenerating tissue in the body that both men and women have) women just have more of it for childbearing.


It may actually be a recessive gene for a chronic inflammatory autoimmune condition that affects both the central nervous system and any organs or parts of the body that carry a potentially strong immune reaction to foreign cells (spleen, uterus, pancreas, liver, including endocrine glands) which would explain why most women with endometriosis turn out to be diagnosed with other similar conditions such as MS or Lupus or IBS or Chrones disease shortly after the onset of endo. Also explaining why significantly more women than men are diagnosed with these conditions usually between the ages of 20 and 30 when endometriosis is more prevalent. But few men still end up with endometriosis implants mostly caused by estrogen exposure (estrogen is produced in men only a little, and women produce it in masses) later to be diagnosed with a chronic inflammatory autoimmune condition.


In conclusion, doctors are not treating the cause of endo because "they dont know what causes it" they're just treating the symptoms as a condition. When in reality, it's a byproduct of another disease. Therefor, MS, Lupus, Chrones disease, it's all the same condition caused by that one hereditary chronic inflammatory autoimmune gene that is different in everybody because it affects different parts of the body spontaneously. It's all the same thing, not all these different "conditions". That's what they all are, conditions of another disorder like conditions of a single contract.


The break down of those "conditions" like Lupus and MS and Chrones and Endometriosis do not exist. They're side effects.


Toxic environmental conditions make all those things+ worse because it either weakens the immune system or sends it into hyperdrive and in fact does both."



I'd like to know ya'll's thoughts on this theory as to being related to one cause passed down through generations as a single chronic inflammatory autoimmune gene that can affect the body in a number of ways then being ruled into separate conditions based on the area of the body it affects. Please, share.

[SNOOPY]

Hello marlanarich and welcome to MSWorld.

Has a Dr. mentioned the possibility of MS to you? If not I am not sure why you are assuming what you are experiencing has anything to do with this disease Multiple Sclerosis is a disease of the Central Nervous System(CNS) this includes the brain, spinal cord, and optic nerves.

The only way to know if you have Multiple Sclerosis is to under go testing for the disease.

Information about diagnosing Multiple Sclerosis:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out
http://www.nationalmssociety.org/Sym...agnosing-Tools

The issue of infertility: I am sorry you are having fertility problems but you are trying to fit a square peg into a round hole in connecting this issue with MS. Multiple Sclerosis does not cause infertility (or endometriosis), but endometriosis can cause infertility.
http://www.nationalmssociety.org/Liv...hips/Pregnancy

Information about Endometriosis:
http://www.womenshealth.gov/publicat...metriosis.html

Information about Autoimmune Diseases:
http://womenshealth.gov/publications...-diseases.html

Abdominal swelling is not related to Multiple Sclerosis. You may want to keep a food journal and see if any of the foods you are consuming are triggering the swelling or other symptoms. Dairy is one of the foods that come to mind. When my Daughter eats dairy she bloats.

If you are on any medications please check side effects as a possible cause to some of your symptoms.

I keep a small stash of prescription Ibuprofen and I had to take one yesterday which helped a lot but not fully with those symptoms. After the Ibuprofen, I was able to withstand the light better and the pain in my neck wasn't as bad.

Over the counter pain relievers will not touch the pain experienced in MS. Multiple Sclerosis pain is treated differently. If you have had some relief from Ibuprofen then your pain isn't from a disease like MS.

[Temagami]

There are links between infertility and bloating and gluten consumption. If you try doing an elimination diet, you can´t "cheat" or you won´t know for sure. NSAIDS like Ibuprofen disrupt the intestinal mucosa and allow particles into the blood stream that should not be there.

[Poppy7402]

I was thinking the same thing Temagami. I'm ones of those who have gluten issues and MS.

The other day I baked beautiful smelling bread and couldn't help myself from eating a slice. The rest of the day my stomach was like I was very pregnant, painful and I felt extremely nauseous. When we were having children I also had six miscarriages that I've now put down to the gluten thing - we had three beautiful children eventually. There were lots of other issues that have settled since I cut gluten from my diet.

There is a 'theory' proposed by some fairly prominent researchers that if you have food sensitivities and you don't take care of them (ie avoid the foods), you have a genetic susceptibility and then something stressful comes along, it can kick off an autoimmune disease. Which one is supposedly pot luck.

There's a lot written by Professor Hadjivassiliou, Alessio Fasano, Umberto Volta, Nora Gedgaudas and many others about the connection between gluten/food sensitivities and chronic disease.

[marlanarich]

Hello marlanarich and welcome to MSWorld.

Has a Dr. mentioned the possibility of MS to you? If not I am not sure why you are assuming what you are experiencing has anything to do with this disease Multiple Sclerosis is a disease of the Central Nervous System(CNS) this includes the brain, spinal cord, and optic nerves.

The only way to know if you have Multiple Sclerosis is to under go testing for the disease.

Information about diagnosing Multiple Sclerosis:
http://www.nationalmssociety.org/Sym.../Diagnosing-MS
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out
http://www.nationalmssociety.org/Sym...agnosing-Tools

The issue of infertility: I am sorry you are having fertility problems but you are trying to fit a square peg into a round hole in connecting this issue with MS. Multiple Sclerosis does not cause infertility (or endometriosis), but endometriosis can cause infertility.
http://www.nationalmssociety.org/Liv...hips/Pregnancy

Information about Endometriosis:
http://www.womenshealth.gov/publicat...metriosis.html

Information about Autoimmune Diseases:
http://womenshealth.gov/publications...-diseases.html

Abdominal swelling is not related to Multiple Sclerosis. You may want to keep a food journal and see if any of the foods you are consuming are triggering the swelling or other symptoms. Dairy is one of the foods that come to mind. When my Daughter eats dairy she bloats.

If you are on any medications please check side effects as a possible cause to some of your symptoms.



Over the counter pain relievers will not touch the pain experienced in MS. Multiple Sclerosis pain is treated differently. If you have had some relief from Ibuprofen then your pain isn't from a disease like MS.

It was an 800mg Ibuprofen prescribed by my doc for pain and swelling after surgery and it did help a little. I am not "set" on one specific cause. However, I am exploring the possibilities because whatever is going on is affecting my life to the point to where I can't do my job right anymore and all I have to do is sit and make calls all day and type. Sometimes, the pain, weakness, and fatigue makes it even hard to type. Can't hold my back straight and my spleen swells up a lot and hurts. all these things coming on one after one over the course of about 6 months and then getting worse. I cannot explain to you how smart I was before all of this started happening and now, I've got neuropathy, it's not peripheral, it's all over my body and I hurt all the time. the pain and tightness swelling under the left side of my rib cage is the scariest part. My Eosiniphils were High in my recent blood test and no sign of an infection. Also, the constant tightness and pain in my neck that travels down my back, up my head, and through my arms and my trouble walking right or at all has brought up the possibility of swelling in my central nervous system. I'm sure you all can understand how scary this is for a 20yo female to go through. This is not just about the possibilty of MS. I just thought that since ya'll had enough experience with autoimmune diseases that ya'll might be able to help me because when I lived in Fort Worth Tx, I was FINE. Now I live in a place where air polution is crap, but the people around me are fine. I just wanted some guidance.

[marlanarich]

On top of that, I just now tried to get up out of my chair and fell right back down and couldn't.

[SNOOPY]

Hi marlanarich,

My Eosiniphils were High in my recent blood test and no sign of an infection.

I am not a medical profession and have no knowledge of what your recent blood work means. This link will give you some information but you really need to speak to your Physician about your symptoms, fears, and what possible causes should be looked into.
https://www.nlm.nih.gov/medlineplus/...cle/003649.htm

I've got neuropathy, it's not peripheral, it's all over my body and I hurt all the time.

How do you know what kind of Neuropathy you have? Have you had testing? Neuropathy can have many different causes.

Information about Neuropathy: http://www.medicalnewstoday.com/articles/147963.php

I'm sure you all can understand how scary this is for a 20yo female to go through

I know it's scary for you but online support groups can only do so much You need to see your Dr.

[SNOOPY]

Blood work:
In the case of MS, blood work is used to check for other conditions. To date, there is no blood test which can be used to rule in or out MS.

[marlanarich]

Hey went to the doc

Doctor said my spinal cord is swelling. What else other than MS causes that?

[SNOOPY]

Doctor said my spinal cord is swelling. What else other than MS causes that?

You should ask your Dr. to clarify what he means by "spinal cord swelling" and what it means. Swelling of the spinal cord can have many causes and the reason you need more clarification.

Multiple Sclerosis causes damage to the Central Nervous System. The disease attacks the Myelin Sheath, the protective coating surrounding the nerves. The damage leaves scaring (lesions)...this is not swelling.

[SNOOPY]

If you are concerned you have MS you will need to see a Neurologist for testing.

[Guzzy]

You also need to go and get tested for Celiac Sprue (Coeliac disease)

It can cause a LOT of symptoms if left untreated, including neurological and fertility ones.

Do not eliminate or reduce gluten-containing foods from your diet for up to 6 weeks before the test; otherwise you may well get a false negative. You need to eat gluten so that any antibodies you make show up in the test.

Wishing you wellness.