Are you sure you have MS?

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Are you sure you have MS?

Postby growing2boys » Tue Jan 25, 2011 3:28 am

Hi everyone,
I have a few lesions on my brain "suggestive" of MS. Negative LP. No obvious spinal lesions.
I also have 4 herniated disks & 8 cysts growing around the nerve root areas of my spine from cervical to thoracic area.

My symptoms- severe leg numbness, weakness, spasticity. The favorite pins & needles (neck down) Generalized muscle spasms (neck down) Constant pain/pressure around my chest. I am 42 & getting quickly worse.

My question.
What makes you feel confident you have MS? There are so many things that can cause lesions on the brain.

I tried taking Copaxone & I found the site reactions horrible. I have a box of Avonex staring at me. I don't want to take it. I'm not convinced I have MS. All of my symptoms can be explained by MS or my spinal problems, so I can't get a "you absolutely do have MS" diagnosis. The only sure MS symptom I have is facial numbness .My neuro thinks I have MS. My spine guy thinks it's my spine.
They can't tell me exactly how my Gabepentin works, but they want me to believe they are 100% certain I have MS?

What makes you guys sure? I don't know how I will motivate to inject the flu when I don't even think I have MS.
Thanks!
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Postby Rokkit » Tue Jan 25, 2011 8:12 am

Does heat make you worse?
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Postby jgkarob » Tue Jan 25, 2011 9:32 am

Hi,
If you were living in Europe, you wouldn't be prescribed a DMD without a diagnosis and 2 relapses.
To be honest, it seems to me that doctors in the US prescribe the DMDs far more often than in the rest of the world and I'm not so sure this is a good thing.
Are you having relapses?
If not, then the CRAB drugs won't do anything.

You could look at Low Dose Naltrexone. It can help a great deal with symptoms. Some people swear that it stops progression, especially for non-relapsing MS.

The old test for diagnosing MS of hot baths, may work. It never did for me.
I have very classic lesions (Dawson's Fingers) and a positive LP.
It can be difficult to diagnose MS, but there are many conditions that have similar symptoms, such as Lyme Disease, Hughes Disease, Fibromyalgia and some other disc-related problems.
Cysts on nerve endings isn't a familiar MS symptom. I have a neuro friend who may be able to help.
best wishes
jg
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Postby growing2boys » Tue Jan 25, 2011 9:59 am

Thanks for the replies.

I've had a negative LP & evoked potentials. Heat does not cause symptoms to worsen. I have periods where my symptoms are worse & then get better, but I have constant weakness, numbness & pain that is getting progressively worse.

My neuro states "I am 100% certain you have MS" & he has become hostile with me since I am not quick to jump on board with the DMD's. He refuses LDN.

I just don't understand how he can be 100% certain. It seems like complete guess work to me & at best I would guess he has a 50/50 chance of being right.

I guess I am curious if anyone is in the same boat as me. How can you really know that it's MS when you only have lesions?
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Postby leetz » Tue Jan 25, 2011 12:04 pm

pharma? kick-backs?
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby 1hunter » Tue Jan 25, 2011 12:23 pm

I have the same question...
i also have a negitive LP & evoked potentials, i had a mild attack of some kind 1.5 years ago (just a little numbness in my hand and leg) that went away. I have had no other symproms since. At the time i had a MRI that showed 9 lesions. I have had 2 more MRS's since and there were only small changes in the most recient MRI (for the better)..
The nero i saw (today actually) said it is still classified as CIS. He stongly reccomended that i start Avonex. He said because of the 9 lesions there is a high probability i will develop MS at some point (50%)
Again i have had no symptoms in the last 1.5 years and i love hot baths and saunas.
i wish i knew what to do....
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Postby tara97 » Wed Jan 26, 2011 11:09 am

I know I dont have ms. just like I know it wasnt ms that my uncle had either. thats just what they call it. I have porphyria and porphyria has caused the lesions and then porphyria caused it to later turn into sjogrens. I can feel the difference between what was called MS and what is now called sjogrens as before it was more localized and more recently I feel it everywhere. I can feel it in my muscles and my perpheral, my parasympathetic system and even in my joints. I used to be negative for ANA during attacks so I know it wasnt sjogrens before but suddenly I have been defaulted to it and have been told that this must always have been so. I have both MS and sjogrens Dx but I reject them both because their must be a how and why baseline to all these what and wheres and a genetic disorder is the perfect culprit for me. dont get to hung up in diagnostics, as they are just observations of where you have been effected not why this is occuring. the answer to the question "why" is "because" or "the reason is that" and this is causation not just correlation.
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Postby growing2boys » Wed Jan 26, 2011 12:14 pm

All great insights & replies guys- thanks

Tara, I had to look up Sjogrens & I am a nurse :oops:
I am sorry you are suffering so much.

I am only hung up on my diagnosis for 1 reason. The spinal doctors will not operate on my thoracic disk (the one most pressing on my cord) if they can blame my weakness & other problems on MS. You can't get a direct appointment into a neuro surgeon - so every time I try to get an appointment with a surgeon that MS diagnosis tags along with me...they tell me "well it's probably your MS"
Having this Ms diagnosis hanging over me is IMO preventing me from getting appropriate care for my spine.

Personally I am at the point where I would rather take a bullet then keep going on like this. I am in constant, terrible pain. I can't walk more then 1/2 mile before I start to shake all over & my leg gets to heavy to lift. I'd just give up if it wasn't for my little boys. I plan on doing just that when they get older. I just tell myself 15 more years of this **it & it's off to Sweden for me for a bit of Kevorkian therapy.

Thanks guys
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Postby lyndacarol » Wed Jan 26, 2011 5:48 pm

Dear Growing – Please do not be impatient about having surgery on a thoracic disc.

Here is my story: Because my GP diagnosed me with Thoracic Outlet Syndrome and had already scheduled a surgeon to remove my first rib, I sought a second opinion from the Mayo Clinic in Rochester, Minnesota. My doctor there did not believe it was Thoracic Outlet Syndrome; but after two weeks of testing everything they could think of, the verdict was a cervical herniated disc. I had surgery, a cervical laminectomy to remove the disc (but scar tissue made it impossible to remove). That car ride home from Mayo's was the WORST! It took weeks to get back to the point I was before surgery. My symptoms never improved; later that year I was diagnosed with MS. Today, I believe my symptoms were MS all along; I believe I went through that surgery for nothing.

I do not fault the doctors at the Mayo Clinic. Everyone there did his best. They are all very caring people! Diagnosis of MS is just very difficult.

I know it is very difficult to be patient when you are in pain. I wish I had the answer for you now, but I think it will be coming for all of us soon. Have you tried a low-carb diet? I think protein and fats are important in the diet (protein for muscles, myelin is composed of fat) – I know that carbohydrates trigger too much insulin production in me and cause me problems.
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Postby Daisy3 » Thu Jan 27, 2011 3:37 pm

Lyndacarol,

I am intrigued with the possibility that insulin production,triggered by carbs can cause problems for people.
My other half is also addicted to anything sweet..
You mentioned a low carb diet, how long did you do it for before you started to see results? I am looking at the Terry Wahls diet for him at the moment. This is because he is relapsing progressive. I hope it will make a difference. If you have tried something different and worked out a strategy then please do share..
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Postby lyndacarol » Thu Jan 27, 2011 6:44 pm

Daisy3 – I discovered that in the hour after I ate a meal heavy with carbohydrates, I was "dizzy" and weak. I was disoriented and just generally felt unwell. After lying down for about an hour after a meal, I felt better again – back to normal. This coincides with the initial release of insulin upon eating; a second release occurs when the food hits the intestines/bloodstream and the amount of glucose in the portal vein determines the amount of insulin needed.

I am also trying to incorporate much of Dr. Terry Wahls's program into my diet. I think the key to her regimen lies in eliminating sugar completely and also any carbohydrates that convert readily to glucose in the body.

All my life I have eaten entirely too much insulin-producing food – sweetened breakfast cereal, white bread in every sandwich, far too many cookies and candies, white potatoes, etc. Now, I avoid all that, as well as totally avoiding any sugar alcohol such as sorbitol, xylitol, mannitol, etc. – any artificial sweetener. I feel much better with this new diet.

I also believe my constant sinus drainage (mucus) since age 6 has also triggered insulin secretion.

I think fats are important to have in the diet. I have recently added whole fat milk because of a Harvard University study on trans-palmitoleate. Avocados are very good – I even read once that avocados reduce insulin secretion (I have been unable to track down the research source of that statement.); even though coconut oil has had a bad rap because it is mostly saturated fat, it is a medium chain molecule and is really good for you.

Try the Wahls's diet for three months – it can't hurt your husband. I had never eaten kale in my life and now actually like it!
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Postby jgkarob » Fri Jan 28, 2011 1:57 am

Hi Linda,
This is my diet too! I have felt so much better since starting it (2006+) and I eat an avocado each morning for breakfast.
Not only does it not cause a spike of blood sugars, but it seems to keep my bowel moving.
I can't emphasise just how important diet can be.

I'd like to know your thoughts on the Swank diet. This is definitely NOT the diet for me, but there is a sizeable group of MSers who swear by it.
In my opinion, it's just another MS conundrum, that there is no one-size-fits-all treatment/diet/ whatever.

However you try telling that to an evangelistic Swanker. Well, actually you can't tell evangelists anywhere that there is more than one true path.
xxx
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Postby lyndacarol » Fri Jan 28, 2011 6:26 pm

jg-- My thoughts on the Swank diet? My opinions may depart from general consensus – I think fats and oils, along with protein, are vital to good health. Emphasis in the last decades has been on "no fat" or "low-fat" and the result has been increased obesity with all its accompanying health problems. When the food manufacturers removed fat, which carries the taste, the sugar component was increased in order to improve the flavor.

Any success that comes with the Swank diet, I believe, comes because it also reduces carbohydrates, which convert quickly to sugar (glucose).

I think we have been hoodwinked into believing all fat is bad. I am not surprised by your experience with avocados; I think they are a source of very good fat! Actually, I think it may be the fish OIL in salmon, etc. that provides us with the most benefit. In fact, the benefits of vitamin D and vitamin E may actually come from their OIL property. Could this be the mechanism for olive OIL, too?

In any event, I am consciously trying to add good fats and oils to my diet, not reduce them.
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Postby jgkarob » Sat Jan 29, 2011 2:13 am

Thanks so much for replying Linda,
The original Swank diet is like the Ornish diet, where all your energy has to come from starchy carbs (lots of bread!) and pulses.

Lots of MSers modify it a little as it's old fashioned advice now, with no recognition to the ratio of Omega 3s to Omega 6s.

It is a bit of a paradox though, why the starchy diets seem to help people and so do the Paleo type diets!
I'd be so ill on the Swank diet - I get indigestion just thinking about it!

I love salmon and actually prefer it raw, although smoked is nice with my avocado.
I have a very high risk of type 2 diabetes and fortunately, all my doctors here are very keen on low carbohydrate diets. So I'm well supported and can discuss diet, instead of having to keep quiet about it (smile and nod) as I did in the UK.
I feel so much better on this way of eating. Nerve pain is reduced, mobility is better as inflammation is reduced.

Which food is highest in vitamin D?
Yep. Lard. I'm fully into fats and feel very good.
There's a great free recipe site at http://www.PaleoFood.com

Thanks again for being here and posting such sensible advice.

jg
xx
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Postby Jimmykilt » Sat Jan 29, 2011 6:40 am

1hunter wrote:I have the same question...
i also have a negitive LP & evoked potentials, i had a mild attack of some kind 1.5 years ago (just a little numbness in my hand and leg) that went away. I have had no other symproms since. At the time i had a MRI that showed 9 lesions. I have had 2 more MRS's since and there were only small changes in the most recient MRI (for the better)..
The nero i saw (today actually) said it is still classified as CIS. He stongly reccomended that i start Avonex. He said because of the 9 lesions there is a high probability i will develop MS at some point (50%)
Again i have had no symptoms in the last 1.5 years and i love hot baths and saunas.
i wish i knew what to do....


This is very similar to my situation. My "ms" was discovered after I had an MRI following an accident. A few lesions, negative on lp and ep, no symptoms. "definitely ms and straight to dmds was the advice". I declined medication, after all I had no symptoms and I was negative on all the tests they gave me. Fast forward 3 and a half years and I still have no symptoms, although I go in for periodic mris and I have had a few new lesions (not many though). I have no interest in the drugs and if anything does happen, I'll look at Ldn way before I look at big pharma. Makes me wonder how many are walking around with lesions that are completely unaware and remain symptomless.
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