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Old 04-12-2010, 01:55 PM   #1
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No diagnosis yet, but looking for advice (diet, etc.)

I'm 37 and female and for the past decade or more, I've been the queen of mystery ailments involving random roaming pains and fatigue. This is in addition to the likely slew of metabolism/hormonal issues I possibly have. I already know I'm hypothyroid and take medication for that and allegedly my levels are good. I was "tested" (inasmuch as it's possible to do so) for PCOS ages ago by an endocrinologist who determined I didn't have it, despite the fact I have nearly every symptom. About 4 years ago, the aforementioned roaming pains led my doctor to send me to a hematologist because I my symptoms could have been Hodgkin's. He determined that wasn't likely. Lacking health insurance and having to switch docs a lot sure hasn't helped.

The past few months, I've had crazy amount of new things to add to my already long roster of appearing then disappearing symptoms, including but not limited to: rectal bleeding (has since stopped), recurring UTIs, bleeding between periods/after sex, fatigue, incontinence, an abnormal pap, etc. The past few days, just as my UTI faded, I now have this crazy insane infected cyst that hurts like hell under my arm, which may or may not be on a lymph node.

The clinic I currently go to has walk-in hours, so at least I can see people when stuff goes on, but I've been there a LOT and I think they're starting to think I'm crazy. I'm hoping this cyst thing clears of its own volition (and is unrelated to my other issues) so I don't have to go in for that, but if it doesn't get better I'm definitely gong in this week, but I'm still really concerned over all.

In the wake of all of my past symptoms coupled with the new ones, I'm beginning to believe that what's been causing my ailments the past 10-15 is actually Multiple Sclerosis. I've had night sweats and tingling extremities on and off for years and that's increased a lot lately, but doctors always want to blame it on my weight (I've been overweight my whole life) and the fact that my weight somehow automatically makes me prediabetic. But I've been tested for diabetes several times over the years and I don't have it and I just had a blood test that again told me my average blood sugar levels the past three months are not in a diabetic range. Nor should they be, as I've been eating pretty damned healthily for the most part the past few months to a year.

I've also been getting mildly debilitating muscle spasms in my lower abdomen on a somewhat regular basis for the past few months, with them becoming more and more frequent in the past month. In the past month or tow I've also been bleeding between periods and after sex and getting back-to-back UTIs. In fact, the bulk of all the stuff that's going on with me has intensified in the past month. So, yeah, it could be cervical cancer. It could be PCOS or some other hormonal thing.

Over the years, at some point or another, and in many cases throughout, I've experienced all of the following: tingling/numbness, incontinence, urinary/bowel/sexual dysfunction, shaky hands, blurred vision, muscle spasms, wandering pain both dull and sharp. So, I've made an appointment with a physician to discuss the possibility of MS. Obviously I don't WANT to be diagnosed with MS (or PCOS or cancer), but I've been struggling so long with so many things that any diagnosis would be welcome.

That said, my gut is telling me it's MS and I have yet to bring this to a doctor because I've been reading about MS just learned how much of the past decade of my life can be explained away by MS. And, hell, I might have those other issues as well. I've been a fount of possible (and very serious) medical issues lately. It's pretty disconcerting and exhausting. Over the past 15 years, the lack of real concern and follow-through by the doctors and specialists I've seen has made me one of those people who uses Google to try to figure out what could be gong on, but never have the details of any disease's symptoms and progression so reflected all of my issues as those of MS do.

Since I the appointment I made isn't for a month and god only knows how long it might take to convince him or her to run tests, etc., my question is this: Is there anything I should start doing dietwise right now?

I've already changed my eating patterns over the past few months in the hopes of dealing with some of the possible symptoms like rectal bleeding and UTIs and I've found that there's been some positive benefits. I rarely eat red meat, I barely drink coffee or alcohol anymore, I eat lots of veggies and grains, etc., I take Omega-3s and try my best to east low carb and low sodium.

So I'm wondering what, if any, other foods I should be eating or what foods/supplements I should definitely avoid. I've read that MS may be caused by an excess of iron in the brain. Should I avoid food/pills with iron in them? I currently take multivitamins with iron because a few months ago I was told I was preanemic, but now I'm concerned I'm just adding to my problems. I'm genuinely interested in advice from those of you who've altered your diet in some way and noticed some improvement, however slight.

Thanks in advance for any advice, diet or otherwise. Obviously, from past experience, I know how long it can take to get someone to believe that this is really my issue, but I've never been so convinced I have something so I'd like to start doing whatever I can as soon as possible to mitigate my troubles. I know nothing will "cure" me, but I definitely want to avoid doing anything that will make this already uncomfortable situation worse.

 
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Old 04-12-2010, 02:23 PM   #2
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Re: No diagnosis yet, but looking for advice (diet, etc.)

Before running off a cliff, check out the services of a competent neurologist who sees MSers as a major part of their practice. There are over 400 diseases which can present with MS like symptoms. If your gut says MS, I would "take your gut" and have the neurologist give you a "gut check".

In the meanwhile you have issues which you are tackling now. Ask your doctor to arrange a nutritionist to meet with you. The nutritionist can look at your meds you now take and help you come up with a healthy plan to follow. You should not start cutting out food groups on a whim. You should consult with a specialist and allow them to help guide you.
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MS diagnosed since October 3, 1982
MS onset circa 1977
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Old 04-12-2010, 02:45 PM   #3
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Re: No diagnosis yet, but looking for advice (diet, etc.)

I am unemployed and do not have health insurance and cannot afford to see specialists unless they are recommended by the clinic I go to and it takes months to get appointments with the physicians who can do the recommending. And who knows what, if anything, they'll wind up recommending. I've been living with all of these recurring issues for years and nothing has led anywhere, at least partially because I lack insurance/funds. I understand that my issue/s remain unknown and without diagnosis and that I'm requesting advice from people who aren't doctors, but I'm still curious to know what diet-related changes have helped MS sufferers. I just want to be as healthy as possible (regardless of how much my body seems to be fighting me) while I wait the months it might take to get in to see someone, let alone to get them to take me seriously enough to test me for the things that might be causing this.

 
Old 04-12-2010, 07:10 PM   #4
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Re: No diagnosis yet, but looking for advice (diet, etc.)

hi. Diet does not affect MS. In fact there is absolutely NO PROOF over the past 10 years that any food group makes MS worse or adding anything helps....the old days when the SWANK diet was in fashion have long since passed....however, the MS society recommends a heart healthy diet. Basically eating low fats and plenty of fruits and veggies are recommended...whole grains certainly help over processed grains. Coffee, alcohol and sugars are just fine with moderation. Red meat is probably the most curious of all foods....everyone knows that it isnt good for you, and yet if you search out lower fat cuts, eating things like Buffalo (bison) or Venison, its actually not bad for you. No fat, no cholesterol. With all that said, its quite possible that Dr Swank was onto something which has evolved over the past 10 years with more current information.

As for your history which you posted....honestly, why do you think you have MS? You wrote that I've experienced all of the following: tingling/numbness, incontinence, urinary/bowel/sexual dysfunction, shaky hands, blurred vision, muscle spasms, wandering pain both dull and sharp. Unless you have every single one of these at once, and they havent gone away- I dont see more then one symtom which reflects MS and even that is random (as you put it). As jayhawk stated- so many diseases present like MS, its a huge stretch based on what you wrote for anyone to take that and say "MS". Youll need a good neurologist - not a GP in order to diagnos or rule it out. There is no other way.

Suggestion to you- stop reading the internet. You quoted us things which you read, which have given you ideas....STOP READING. Go to your clinic and start ruling things out which they can help you with. I understand lack of medical insurance is a real hinderance- but looking up things online, reading outdated and un-monitored info and getting ideas in your head isnt going to help you either. No offense, but you have symtoms all over the place and you need a medical professional to help you sort it all out.
Wouldnt be jumping onto the MS bandwagon yet.....your symtoms are just not consistent and if you have been having them for all this time, you would be starting to see signs of definate disability by now. It doesnt sound like you have a progressive neurological disease, it sounds more like you have symtoms which bounce all over. This doesnt sound like MS.
I hope you find answers soon.
nikki
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Old 04-12-2010, 10:19 PM   #5
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Re: No diagnosis yet, but looking for advice (diet, etc.)

All of the symptoms I've mentioned plus the consistent numbness/itching/tingling in my legs (generally from about 6-pm until I fall asleep, which is sometimes as late as 4 a.m.), arms, and elsewhere . I currently have the following symptoms all at the same time: the aforementioned tingling/numbness/itching, recurring UTIs, unexplained bleeding, cysts, random infections, random stabbing pains, abdominal cramps, lower back spasms. I plan to ask the next physician I'm able to see (my appt. is more than a month away) to refer me to a nutritionist after I give him a list of all my symptoms past and present.

I already eat a heart healthy diet so I'm good on that point. While I know there isn't a specific diet for MS, I thought there might be a chance that some readers have tried diet manipulation to help with their issues and I was curious. Just because there isn't a prescribed diet for MS doesn't mean someone out there hasn't tried something. Whatever I have, it's already been years of suffering and I'd like to minimize it as much as possible on my own.

Likewise, I'm reading things BECAUSE it's been 15 years and none of my doctors have found out my problem nor do they seem to have any sense of urgency to do so. Now that I finally have a clinic giving me free health care, I feel I can push them harder, but I've found that the more I defend my position about my health and the more I come to them with issues, the less they actually seem to take me seriously. I'm actually excited to go in as a walk-in tomorrow to show them this huge, painful, infected cyst (possibly an infected lymph node) because it's something THEY'LL actually be able to SEE and FEEL. Trusting doctors has led me nowhere in the past 15 years. I don't see the problem with researching things and learning more about how the body works and what causes could be to blame when it doesn't. I'm not a hypochondriac and I know that it's easy to get stressed or swayed by things you read online, but at this point, I truly feel that if I don't do it, no one else is going to.

Don't get me wrong, I understand what you're saying about not getting worked up or too speculative, but it's the only way I feel I can fight for myself when I'm waiting and waiting to see doctors and then waiting because they tell me stuff like, "Well, make an appointment in 6 months and we'll reassess." As if I have nothing better to do than sit around for 6 months in pain and discomfort.

Last edited by MeshGearFox; 04-12-2010 at 10:21 PM.

 
Old 04-13-2010, 04:55 AM   #6
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Re: No diagnosis yet, but looking for advice (diet, etc.)

I wish you answers and good health. I dont mean to offend you. I just dont think you understand that MS is a progressive disease. UTIs, Itching, unexplained bleeding, cysts and random infections along with stabbing pains and abdominal cramps and stabbing lower back pains are your first 8 out of 9 symtoms which you list. The 9th is tinging/numbness. Only the 9th is even remotely a sign of MS. And, that is a sign of no less then 500 other diseases...

The reason I mentioned not reading is because the internet is not monitored. 99% of the details/facts and writings are purely outdated, bogus or guesses. Its not medical facts. Therefore, when people read things, they automatically jump to "I have that" or "that sounds like me" and they get carried away.

MS is the type of disease, that when it hits- you have a relapse. Almost all of us have wound up in the hospital, or at the very least in our doctors office, being sent for aditional tests- usually MRIs, and then we find out what is going on. Almost all of us had an onset symtom which we still have. Every single one of us deals with a few things in common. MS is progressive, it is also a disease which affects fatigue and its not the common "im tired all the time' type of fatigue. MS fatigue is specific and those of us who have it, know what it feels like.

I hope you dont have MS. I wouldnt want you to have it. But I really dont think you do. In fact, almost all of your symtoms suggest an infection of some sort, which really does need to be checked out further. You should also request to have your blood levels done, ruling out everything including vitamin deficiencies. You might also look at reinvestigating some substantial GYN advice. Alot of what you are describing could be GYN related.

I wish you peace as well as health. And, speedy answers.
Nikki
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RRMS- dx 05

 
Old 04-13-2010, 05:22 AM   #7
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Re: No diagnosis yet, but looking for advice (diet, etc.)

why you not try using acai berry?

 
Old 04-13-2010, 05:35 AM   #8
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Re: No diagnosis yet, but looking for advice (diet, etc.)

There is no panacea for MS or many other maladies. Regarding MS were it so simple to cure, surely someone would have found by now. Beware of those who will seek to part you from your money, regardless of how little or how much you have. In times of desperation, the sweet words of salvation from your predicament is only to loosen your grip on your monies.
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Old 04-13-2010, 01:13 PM   #9
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Re: No diagnosis yet, but looking for advice (diet, etc.)

There was an entire article in the last months listing of a national MS magazine on why Acai berry is NOT recommended for MSers.....anything which stimulates the immune system is not recommended and anything whch is a "fad" such as Acai Berry or any of the other promoted "miracle juices" are nothing more then what Jayhawk talked about- a way to part you with your money!
Be ware of taking something which will actuallly excaberate your MS.
Nikki
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RRMS- dx 05

 
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