Does this sound like MS to you?

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Does this sound like MS to you?

Postby Stephie » Sun Jun 05, 2011 6:42 am

Hey guys :) I'm a 17 year old female, and I've had a horrible illness for 2 years now. No doctor can find out what is wrong with me. They've ruled out arthritis (and the rheumatoid factor), and they've checked my HLA-B27 which came back normal so unlikely to be Ankylosing spondylitis. I'm starting to get really upset and frustrated over this, because I don't know if I'm going to die young, or what I even have! I've got a whole list of symptoms, which I'm going to write too, and I was hoping if anyone here has similar set of symptoms that has MS. I am convinced I have MS, however my doctor won't send me for a brain MRI or a lumbar puncture. I'm very worried that he just thinks that I want the medication, which is NOT true as I try hard not to use any medication.. I just want to know what it is. Anyway, here's my list of symptoms, some probably don't fit, but I thought I'd put them too;

. I don't have any of the eye symptoms, but I do get random flashes of light like a camera flash going off.
. Muscle weakness in my arms and legs when I relapse.
. Stiffness and no muscle tone. Actually been told that I have virtually no hamstrings.
. Posture problems. My rheumatologist said they won't investigate more until I sort out my posture.. but I physically cannot!
. Numbness and tingling in my lower legs and arms just randomly when I can be doing anything (sitting, standing, walking etc)
. Itchyness and burning sensations in my legs. This started recently, and it sometimes keeps me awake at night.
. Sometimes I have a loss of co-ordination, especially when I'm having a really bad day. My vision dissappears, and I'll fall over but it doesn't hurt? It's weird.
. Again, balance issues and falling over. Happened in college recently, but that could have been due to the dicloflex.
. Constant IBS. Stress or excitement makes me have stomach cramps, but most of the time I only manage to go once every few weeks. I use medication to give me regularity, but it does not work.
. Anxiety - sometimes for no reason at all. I can just be walking normally and then suddenly feel peculiar.
. Sometimes I forget where I place things.
. Horrible respiratory issues. I get a tight chest and a pain just under my ribcage, near my diaphragm. Sometimes I can't breathe properly. If I twist my body, my lungs intake and exhale air without me actually physically breathing.
. Pain in my ribcage - around the front and more around the back where my spine joins.
. Cold hands and feet - My body can't actually feel them cold, but if I touch other parts of my body with my hands, I can feel the cold.
. Pain in the top of the cervical spine and lower lumbar, usually not in the middle.
. I get extremely emotional sometimes, and will laugh/cry for no reason.
. Pain from no where. An MRI and x-rays have been done on my back and it's structurally fine!
. Constant fatigue.
. Paracetamol and codeine ineffective - Needs to be anti-inflammatory.
. If I bend my head down to my ribcage, I get an electric feeling down my back. Also get this in my legs.

I know nobody here is a doctor (..at least I don't think so lol), but I really hope people read this, and say that they have something similar, so I know I'm not crazy and these aren't a bunch of random symptoms and illnesses. Thanks everyone :)
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Postby lyndacarol » Sun Jun 05, 2011 10:17 am

Stephie – first of all, welcome to the ThisIsMS community. Overall, this is a friendly group that offers support and information that we find on MS.

You did not ask for advice on what to do, but wanted to know if your symptoms sound like MS. Absolutely, it is possible to be MS. I'm sure that many of us have had a good many of the symptoms you describe.

And this one:
If I bend my head down to my ribcage, I get an electric feeling down my back. Also get this in my legs.
is a classic; known as l'Hermitte's sign.

And this:
I get a tight chest and a pain just under my ribcage, near my diaphragm. Sometimes I can't breathe properly.
sounds like what is commonly referred to as the MS Hug.

In fact, as I look over your list again, I think that everyone of us has had one or more of the same symptoms. I know that many of them (cold hands and feet, for sure) have been discussed here in many or lengthy threads; use the search feature here to find some of them.

Be strong and continue looking for the answers; you are NOT crazy; you will not die young unless you play in traffic; you have found many friends here.
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Postby tsoft » Sun Jun 05, 2011 3:02 pm

Yes, it might be MS, but I think it is more likely to not. So, first I recommend you to calm down. It seems you have a doctor who makes the necessary (HLA-B27 etc.), so talk to him about your MS worries and request a MRI to remove your worries. Remember that these symptoms are very general and can be caused by a bunch of diseases, or even just anxiety. In this connection take a look on this site:
http://www.anxietyzone.com/index.php/topic,9832.0.html

And remember also that whatever happens from now on, as mentioned lyndacarol: you have found many friends here
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Postby mrbarlow » Mon Jun 06, 2011 12:26 pm

Many of your symptoms sound familar - some from personal experience.

I'm sorry to hear about your rather unhelpful Doctor. Are you in the UK by any chance. This sort of treatment sounds like No Hope Service Gold Standard MS treatment.[/b]


My advice would be to assume you have and adopt a damage limitation strategy. High dose vitamin D & co factors, omega 3's,anti inflammatory diet, zinc etc. THere is no harm in this approach and whatever you have will probably respond to better nutrition and anti inflammatory food

You could as a last resort consider getting an MRI done privately (£400 in the UK)

Good luck
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Postby bartman » Tue Jun 07, 2011 6:40 pm

Stephie,
I know exactly what you have and it's what many on this board have as well they just don't know it. You have Lyme and Bartonella and probably babesia. Read the following Dr. Burrascano Lyme Guidelines (just google it), than go to Lymenet.org and post this same message and you will get a host of responses on what to do. Please take the time to do this right now, it is a long hard recovery. One of the most common symptoms of bartonella is rib cage pain. Babesia causes muscle weakness. The symptoms of Tick Born Disease and MS are identical, the difference is that most people who go the route of Lyme recover, no one recovers from MS because MS treatment are completely opposite Lyme treatment, in fact immunosuppresant drugs like steroids and interferon invigorate the bacteria and help it spread deeper into your tissue and organs and nerves. Then your become so sick and the infection because it no longer is in your bloodstream but deep inside tissue is near impossible to detect. Read about the Lyme disease controversy. Please educate yourself, you are way to young. Get out of this forum, MS is for 26-40 year olds, you do not have MS.
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Re: Bartman

Postby NHE » Tue Jun 07, 2011 10:57 pm

bartman wrote:I know exactly what you have and it's what many on this board have as well they just don't know it. You have Lyme and Bartonella and probably babesia.


There's absolutely no way you can know this. You are neither a medical professional nor have you examined this individual. A more responsible and appropriate position would be to state that this person's symptoms appear consistent with a possible lyme infection and then suggest that they get examined by a qualified medical professional.

NHE
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Postby Wonderfulworld » Wed Jun 08, 2011 7:23 am

According to MS theory its a disease of young adults age 26-40. She is too young.

It is a disease that is often (but not exclusively) diagnosed often in that age group. Doesn't mean that it doesn't happen children and adolescents too! I certainly showed signs of having developed it age 12 although it wasn't diagnosed until I was 25.

Stephie I really hope you find out the true cause of what is ailing you soon. It's very distressing when you feel symptoms and don't have a name on what's causing it.
Has your GP run a blood test for Coeliac disease? - Anti-gliaden antibodies test. Coeliac disease can cause neurological symptoms and a host of vitamin/mineral deficiencies too - would be good to rule it out anyway as it's easy to 'fix' with diet alone - although I would not necessarily go 'gluten-free' unless you are truly coeliac as it is a restrictive diet.
Hope that helps
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby mrbarlow » Wed Jun 08, 2011 7:36 am

Steph

I would suggest you approach your Doctor and try and force the issue of some tests. Lymes disease is a possibility but Bartman is being irresponsible by categorically telling you that is what is is. However from what you describe clearly something is wrong and a 17 year old should not have the symptoms you describe

If not done already I would suggest;

A B12 deficiency test to see if you have Pernicious anaemia which mimics many of the symptoms of MS & indeed Lymes.

A test for Lymes disease.However bare in mind whether you have likely been bitten by a tick - do you live in a forested area / area with lots of deer?

An MRI to look for MS characteristic lesions.
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Postby Stephie » Wed Jun 08, 2011 2:03 pm

Thank you very much, Bartman, for making me feel even worse. Do you not think I have checked for these things? I have NO rash, and the rib cage pain is not the predominant pain. I live in a city in the UK. No rural areas, and I have not been to any rural areas, so if I do, I have no idea how I've caught it. I am actually currently preparing myself for a career in virology, so DO NOT tell me I am uneducated, that is extremely offensive. You just said yourself MS is commonly diagnosed in young women, which I am.

I have tried and tried for 2 long years of non stop pain, and useless medication to get a diagnosis. I have cried for solid days straight because I don't know what it is, and I'm so frightened. I have been tested for everything under the sun, and everything has came back normal. If I had lyme disease, would I not have increased white blood cells? My CBC came back normal.

Wonderfulworld - Thanks :) Yes, I've had a Coeliac disease test ran with my second batch of blood tests about half a year ago. I have been diagnosed with IBS though, which I know can cause some symptoms, but I wouldn't think they'd be this severe.

mrbarlow - I do live in the UK, and I've noticed that all doctors I have had are completely ignorant towards both MS and AS (I have AS in the family). I've had anemia for a long time, but never had a b12 test. Ive got an appointment with a rheumatologist, but also a connective tissue specialist (I have no idea if they're connected?) and I'm going to request a brain MRI there. Also I have never been into a forest area, and I've never even seen a deer in real life. I'm no medical professional, but Lyme disease sounds near impossible :roll:
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Postby jimmylegs » Wed Jun 08, 2011 3:24 pm

hi stephie,

i'll throw a nutritional 2 cents into the mix if you like:

'I don't have any of the eye symptoms, but I do get random flashes of light like a camera flash going off. '
flashes could be indicative of optic neuritis a common presenting symptom in ms. optic neuritis is also seen in patients with suboptimal zinc levels.

'Muscle weakness in my arms and legs when I relapse.'

could be a vit D3 or calcium problem. more likely iron though, since iron deficiency is so common.

'. Stiffness and no muscle tone. Actually been told that I have virtually no hamstrings.'

magnesium is low in ms patients on average. stiff muscles, spasticity etc, even tetany can be treated with magnesium. if the calcium to magnesium balance gets off, there's not enough magnesium, to occupy enough of the calcium receptors, which trigger muscle contraction.

'. Numbness and tingling in my lower legs and arms just randomly when I can be doing anything (sitting, standing, walking etc) '

hard to say but think about b complex. and anything that will help your circulation (including magnesium, actually), plus hydration.

'. Itchyness and burning sensations in my legs. This started recently, and it sometimes keeps me awake at night.'

again, b complex, i'd have to go back over recent posts to refresh my memory for anything other than b-complex for the burning feet thing.

'. Sometimes I have a loss of co-ordination, especially when I'm having a really bad day. My vision dissappears, and I'll fall over but it doesn't hurt? It's weird.'

that sounds pretty odd. can't say i have any specific recommendations but the most messed up i ever got cognitive/coordination wise, was due to zinc deficiency.

'. Constant IBS. Stress or excitement makes me have stomach cramps, but most of the time I only manage to go once every few weeks. I use medication to give me regularity, but it does not work.'

water water water, zinc zinc zinc, magnesium magnesium magnesium.

zinc to help the intestines heal (search the forums for posts by me containing the phrase "tight junctions" to learn more), magnesium to loosen, and provide needed nutrition, and water to help loosen as well.

'. Anxiety - sometimes for no reason at all. I can just be walking normally and then suddenly feel peculiar. '

magnesium, and high potency fish oil, and vitamin d3.

'. Sometimes I forget where I place things.'

fish oil, water, and zinc.

'. Horrible respiratory issues. I get a tight chest and a pain just under my ribcage, near my diaphragm. Sometimes I can't breathe properly. If I twist my body, my lungs intake and exhale air without me actually physically breathing. '

could be a spastic diaphragm. magnesium.

'. Pain in my ribcage - around the front and more around the back where my spine joins.'

probably vitamin d3, and magnesium. both low in ms patients (but ironically still in the normal range)

'. Cold hands and feet - My body can't actually feel them cold, but if I touch other parts of my body with my hands, I can feel the cold.'

magnesium and circulation, vascular health etc

'. Pain in the top of the cervical spine and lower lumbar, usually not in the middle.'

lots out there to read on bone pain and vitamin d3

'. I get extremely emotional sometimes, and will laugh/cry for no reason.'

we call it lability, it has links to suboptimal zinc which is also common in ms patients

'. Pain from no where. An MRI and x-rays have been done on my back and it's structurally fine! '

bone pain i take it?

'. Constant fatigue.'

iron is the go-to

'. Paracetamol and codeine ineffective - Needs to be anti-inflammatory.'

you don't have paracetamol or codeine nutrition issues. vitamin d3 is anti-inflammatory, so is zinc, fish oil, magnesium, etc etc

'. If I bend my head down to my ribcage, I get an electric feeling down my back. Also get this in my legs.'

it's called l'hermitte's sign and is a clinical indicator of an active cervical lesion.

if you are able to ask for nutritional testing i can point you to detailed bloodwork threads i have done for others. there are also posts detailing optimal levels seen in healthy controls for the various nutrients that are common in ms patients.

hope that helps!

jimmylegs
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby bartman » Wed Jun 08, 2011 3:25 pm

Stephie,
First, I apologize if I offended you. I do not believe I said you were uneducated. What I mean when I say educate yourself about Lyme disease and the coinfections bartonella and babesia is to learn about the biggest controversy in medicine. I had know idea about it. But basically, it is a misconception to think Lyme disease requires a rash. It does not, in fact less than half get the bullseye rash. But the controversy of Lyme is over the unreliable testing which misses more than half of the cases and the duration of treatment which guidelines say are 2-4 weeks. In the US, there are currently 7 states that have passed laws protecting doctors who treat lyme with long term antibiotics and every state has the same bill going thru the legislative process. Also, bartonella can be transmitted via other pathogens besides ticks such as fleas, lice, and other insects. You should take a look at the antibiotic section on this site and learn about the Wheldon protocol in relation to CPN (which is known to cross-react with Bartonella). There is also a documentary called Under Our Skin that provides a really good summary of the controversy. Again, it is my belief that MS is infectious and based on the symptoms you wrote down it sounds like bartonella, babesia and lyme. I was treated for all of them and I can tell you it has made a world of difference. I personally had the respiratory problems and the ribcage pain which cleared up with antibiotics. I was sick for years but since my cousin was sicker with what turned out to be misdiagnosed MS for 12 years, I didn't complain. I think this is a huge global problem that the doctors either don't know about or are completely ignoring. I am just trying to help you and spare you years of pain and suffering for my entire family. I guess whats the danger of giving antibiotics a try, you might be surprised, but you need to understand it gets worse before it gets better. Again, I will check but I don't believe I ever said you were uneducated, if I did that wasn't my intention. My intention was to get you to really become educated about the lyme disease controversy. Lyme disease is a misnomer because it's pretty much a guarentee that you also contract one of the coinfections with it making it much more difficult to detect and treat. It wouldn't hurt to tell someone else about this thread and have them research with you, 2 heads is better than 1, especially if you feel so ill. I don't have any reason to be on this forum other than to pass along knowledge that I learned to try and help. I had absolutely no idea the biggest controversy in medicine involves Lyme disease (which mimics over 300 other diseases, including MS) and I don't think many people do.
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Postby bartman » Wed Jun 08, 2011 3:33 pm

Stephie,
This was an article in The Telegraph on May 16. It wouldn't hurt to read it and maybe contact someone in the support group listed at the end. I am just trying to help you.

<shortened url>
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Postby Stephie » Wed Jun 08, 2011 3:50 pm

jimmylegs - Thank you loads! I'm going to suggest the vitamins/minerals to my doctor, and see if he can prescribe me anything :)

Bartman - Sorry, I probably misread your post. Sorry for being angry, but I'm sure you can probably understand how frustrating being diagnosed it. I don't believe I have lyme simply for the reasons that the only symptoms of lyme that I exhibit, are the same as the ones for MS. I don't have any of the additional lyme disease symptoms - No fever, no hairloss, no weightloss, fine menstrual cycle, my urine is normal colour, among other things. Anyway, I guess it can be a possibility, so after I have a brain MRI to rule out lesions, I will look into it further :)
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Postby bartman » Wed Jun 08, 2011 4:41 pm

I don't take it personally, I understand how sick you are and just want to help. FYI, lesions don't necessarily mean MS, they can be caused by infection. The best way to know for sure is to treat with antibiotics and look for a reaction, called a herxheimer which is produced from the toxins of the bacteria making you feel worse initially. One last thing, and I'll leave you alone forever if you decide to get a CRAB drug look into Copaxone and Minocycline. There are many studies that show the 2 combined are better than Copaxone alone. Coincidentally, you will also be treating both at the same time which protects you either way. Just know it is a long process. You should also look into The Wheldon Protocol. Dr. Wheldon treated his wife Sarah with an antibiotic combo that stopped her MS and she had remarkable improvement. And they are from the UK. All the best to improved health, my thoughts are with you.
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Postby HunnyBunny » Thu Jun 09, 2011 7:42 am

Hi Stephie,

Sorry that you're going thru all this. I started having problems in my late teens early 20's, but I'm one of those bloody suffer in silence types, and didn't do much about it till my 30s... and still waiting for answers in my 40s. It's good to see that you're keeping up on this. Don't give up. I would definitely look into all the supplements recommended by Jimmylegs.

I'm very curious about your Celiac test results. You didn't post it, so I'm assuming it was OK. If you did, then I'll blame it on my crazy eye issues ;) . I am Celiac/gluten intolerant, and just wanted to let you know that the symptoms CAN be THAT bad. My tests came back negative for Celiac, but I had already been on a gluten free diet for 1/2 year by the time they got around to the test. They said the anti-bodies were too low for Celiac confirmation, but I found out later that you have to be on a gluten diet for at min 3 mths straight in order for the test to work. I also belong to the celiac.com forums, and there will tell you that even the blood test is not always competent. I am most definitely gluten intolerant. A gluten-free diets is highly recommended for those with MS as it is very common to be gluten intolerant. Though the most painful symptoms (including muscle pain, abdominal pain, & migraines) have greatly reduced, many are still there (numbness, tingling, extreme weakness, babinski, I could go on). So I'm still waiting for my spine MRI, which luckily is this Monday!!!

Hang in there Stephie, this is a great forum for support!
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