Need some support

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Need some support

Postby jml945 » Mon Mar 28, 2011 2:38 pm

Hi everyone,

I have had a series of reocurring MS-like symptoms for the past 5+ years but have not been diagnosed with anything to date.

It started in 2005 with a burning/tingling sensation in my legs and torso areas. I have been to multiple doctors and neurologists who have done MRI's of my brain and spinal cord, blood tests, LP, all clean.

Each time I get a new episode of burning and tingling, which mostly happens in my legs, it seems worse than before. Lately I have noticed it is preceded by a foggy sensation in my head which is very difficult to explain but the best way to describe it is to say a very dull headache that doesn't hurt but makes me feel a little out of it. Can this be the sign of inflmammation in my brain? Every time I get these feelings I always end up having major symptoms afterwards.

Right now I'm experiencing the worst leg symptoms I have ever had. My legs feel so heavy and wobbly, and it's difficult to walk. I also get terrible cramps in my feet and calves at night which have been getting worse and worse as time goes by. I feel like my body is slowly dying on me, and I'm far too young to have these sorts of issues (I'm turning 30 in October).

My wife is having a really hard time dealing with my health issues and thinks this is all in my head. Doctors basically treat me the same way, and I'm having a hard time not giving up on getting a diagnosis and trying to get better. From the start, doctors assumed it was MS based on my symptoms but since I showed no lesions from my MRI they have not given me any diagnosis, and essentially have told me there is nothing wrong with me. Meanwhile I just get worse and worse, each attack becoming more debilitating.

Is there any way to get a diagnosis based on a clinical basis? At the very least I want to try some treatment to see if it helps me, or at least have the peace of mind of having a name for my condition. It would be better than having someone tell me it's all in my head. I know that it is not normal to have problems with my legs (as well as the countless other symptoms I have). If I end up losing my ability to walk because I couldn't get treatment soon enough and later find out I have a condition like MS I am going to be incredibly upset.

Has anyone else had a similar experience to mine? Any advice? What should I do and how do I go about relieving my pain and emotional distress?

Thanks,
Joel
29, male, Dallas TX
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Postby Filmmaker » Mon Mar 28, 2011 3:10 pm

Are you having any disabilty so far? Your symptoms may well be from fibromyalgia, chronic fatigue or a series of others mysterious diseases that are not MS which is alos a clinical diagnosis confirmed with MRI findings...
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Postby jml945 » Mon Mar 28, 2011 4:53 pm

No disability, just difficulty doing some of the things I have been doing.

Doctors have so far ruled out Fibromyalgia, Lupus and Lyme disease so it's not any of those. Besides, from what I have read my symptoms seem most similar to MS in how they come and go and the types of symptoms etc.
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Postby scorpion » Tue Mar 29, 2011 12:22 pm

jml945 wrote:No disability, just difficulty doing some of the things I have been doing.

Doctors have so far ruled out Fibromyalgia, Lupus and Lyme disease so it's not any of those. Besides, from what I have read my symptoms seem most similar to MS in how they come and go and the types of symptoms etc.


It would ebe very rare for someone to have gone through all the tests you have gone through and still have MS although it is not impossible I guess. Are there any large medical academic centers close to you that you could maybe make an appointment with? Sometimes it can take a litle while to be seen at them but they are usually on the cutting edge of medicine and may be able to give you a more definitive answer.
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Postby jml945 » Tue Mar 29, 2011 1:03 pm

Really? I have a friend who waited about 13 years to finally get an MS diagnosis after experiencing symptoms similar to the ones I have been having, albeit much more mild than what I have dealt with. I've heard of some people waiting 20 years or longer to get a diagnosis.

I could go to a University hospital, but I really want to wait until my symptoms get bad enough to warrant that. Right now they are bad, but not totally debilitating. If it gets to the point where I have a tough time walking, I will drag myself to the doctor but probably not before then. Suffice it to say, I have very little faith left in our medical system.

90% of the "care" I received was a doctor asking me a few questions, a series of poking and prodding, and then watching them shrug their shoulders and tell me it's probably anxiety. Meanwhile I have accrued thousands of dollars in medical bills for this care, receive no diagnosis at all, and am getting worse. It doesn't help that most of my symptoms are invisible and that no one else experiences them but me, but if I do have some sort of neurological disease like MS and it's a progressive form I doubt it will stay invisible forever. I guess my best "hope" for a diagnosis is to have it clinically diagnosed based on obvious symptoms, but I do realize that may take many more years. Guess I will have to learn some more patience.
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diet

Postby Selmahope » Thu Mar 31, 2011 6:06 pm

I would get on one of the MS diets if I were you and see if they help reverse your symptoms-the ms recovery diet is a good start/book, jelinek/swan, or doctor Wahl's. Don't wait for a diagnosis--the docs no so little about the spectrum of autoimune diseases. I too have no diagnosis but a multitude of ms type symptoms including optic neuritis, balance, gait, numb all over, muscle weakness, insomnia etc etc etc-it's been progressive. Maybe if I'd gotten really serious and followed one of the MS type diets, reduced stressed, regular meditation, etc. it would not have progressed. Doing it now .
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Postby jml945 » Fri Apr 01, 2011 5:53 am

I'm not really a believer that diet alone can reverse MS, but that's just me. I would rather go the traditional route and get put on some MS meds that have been proven to stop the progression of the disease. But apparantly that's just not an option for me as I can't get a diagnosis of any kind right now. Well except for "general anxiety disorder", and a prescription of lexapro, which obviously has not worked to cure me.... at all.
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Postby nellie » Fri Apr 01, 2011 7:26 am

jml- I had exactly your symtpoms at age 32. Went thru every test possible. Mri, spinal tap etc. I, too, was told it was anxiety & it did go away for quite sometime. As time went on the legs got a little worse and 15 years down the road I fell & broke the shoulder. Then they found it on the mri. I like you wanted an answer earlier on so I could have had some type of treatment. Now even though I have had ccsvi treatment I am no better so keep pushing to find out as I feel I would be doing so much better had I been diagnosed earlier. If you do get a ms diagnois ccsvi at your age is a great alternative. Good luck!
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Postby jml945 » Fri Apr 01, 2011 8:11 am

That's my worry nellie. My legs are getting much worse as time goes on. Last night I had a "dream" where my left leg was completely cramped, but it was actually happening in my sleep... and it woke me up. It was probably the worst cramp I have ever had. And my feet cramp up on almost a nighly basis. I fear that if my legs keep on progressing at this pace I won't be able to walk very well 10 years down the road... I'm only 29 now and should be able to exercize and get around perfectly fine but I can't. And I don't understand how any doctor can tell me that nothing is wrong with me and this is all just anxiety....
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Postby nellie » Fri Apr 01, 2011 9:31 am

You sound just like me. I forced them to do the spinal tap because I was sure it was MS. My sister has it & I knew the symptoms. They just kept saying it was anxiety but years later it was confirmed. In fact, I even saw a chiropractor looking for help when they couldn't find it. The first thing she said after feeling all the inflamation is "have you been screened for MS." I certainly am not trying to say it is MS but just be aware it is hard to detect sometimes & pursue all avenues. I,also, had immense tingling, numbness & spasms. Wish it had been anxiety for me & hope it is for you.
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Postby jml945 » Fri Apr 01, 2011 11:13 am

I had a spinal tap done years ago, nothing conclusive showed up. It was a horrible experience and they had trouble getting the needle in the first time. Then the hole didn't close up so spinal fluid was leakind out for days giving me horrible migraines and making me vomit they were so bad. So needless to say, I am not exciting about the prospect of having it done again.

But at the same time, just waiting as I get worse seems like a horrible option as well. But I guess MS has no cure so it really doesn't matter either way, if I do have it I'm really not going to get any better. I guess I just need to take life one day at a time which is what I've been doing for the past 5 years which have been the worst of my life. I cannot express how much physical pain I have endured, no one I know has any idea what I have gone through, not even my wife or my parents. It has literally been hell on earth. Any part of my body might be affected at any point, be it my legs, my arms, my eyes, eye lid, shoulder area, foot... or just fatigue in my entire body. This is why I want to figure this out more than anything in the entire world, not so much so I can get better, although I do wish that, but so that people can finally understand what I'm going through. Right now it's "Joel compains a lot about not feeling well... he's probably a hypochondriac or has anxiety" as opposed to "Wow, Joel has MS (or something else), that's probably why he hasn't been feeling well for 5+ years".
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Postby tara97 » Fri Apr 01, 2011 1:13 pm

I would take some magnesium for those leg cramps if you want to get on top of this and dont wan to wait around for doctors to figure this out then I would not dismiss nutrition as it is what you are made of. If you suffer from an illness then you suffer from an imbalence of what you are made of.
the cotton behind the eyes thing that makes you feel foggy, is my beleif that when I experience this, I am overproducing gaba and the chemistry in my body to calm my nerves is too much. I slur like I am drunk sometimes.
do not become too distrought about this whole diagnosis sham. it is my completely far out belief that medical school has become a trade school for Rx protocol. The job of Doctor or medicine man should be left to the empathetic but those who go into the feild do it because they seek power and prestige not because they understand. those who seek power and prestige are generally egotistical because it is the ego itself who seeks this power. You have nothing to lose while you wait for a diagnosis to at least explore nutrition. the lie that nutrition is an insignificant source of balence was designed by those who financially gain from us believing this lie. Or perhaps I am crazy. I wish you the best at any rate and I hope you dont do what I did and dive into madness and suffering just to vindicate that I am sain and it is not in my head.
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Postby jml945 » Fri Apr 01, 2011 1:41 pm

I'm no fan of how doctors today push around a lot of expensive drugs, but I also am skeptical of any "cure" for MS or other chronic diseases using only nutritional supplements and diet. Do you know of anyone who has been cured of MS from these methods? Because if so I would do it in a heartbeat... but I don't think it's at all credible.
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Postby tara97 » Fri Apr 01, 2011 11:30 pm

I put myself in remission after it going progressively worse non stop for about 9 months. I had plasma pherisis and cortico steroid treatments and several rounds of antibiotics and just kept getting worse. I even lost control of my parasympathetic nervous system. at one point I thought I really had als or something else because of the peripheral involvment. In fact I still believe that I really have porphyria but that notion is unsupported by diagnostics. I have gone 8 years the first two bouts of paralysis only lasted two weeks each, the third lasted 8 months of going back and forth and then spontainiously remissed and then the forth I finally developed an ANA titer of 1:1280 but that was new. finally last year one doctor finally said that this is MS and no one bothered to pull all the info together at once to evaluate this obvious fact because the lesions we have on film from the past did not leave a scar. I had to go through 8 years of looking at each bout as a separate entity before any one thought to pull it in to one disease process but by that time the sum of this things parts had been so over analyzed that the diagnosis of MS was not good enough anymore because it described what and where but not how and why so I moved onto porphyria which explains how and why but not what and where. I have a genetic predisposition to environmental vunerability. I put myself in remission but I dont know if I really have MS or do I just appear to have it. Like I said just look into the factors and keep an open mind. no snake oils just minerals and vitamins, clean living and this can be considered in conjunction with western medicine it does not have to be abandoned
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Postby Loobie » Sat Apr 02, 2011 5:27 am

jml945 wrote:I would rather go the traditional route and get put on some MS meds that have been proven to stop the progression of the disease.


If you find one of those, let us know! Seriously, there really aren't any medicines proven to be effective in stopping progression. If there were, we'd be all over them instead of continuing to progress. Have you had MRIs of your spine? I have questionable lesions on my brain and everything that is a definite is on my spine. I'm not alone in that regard either.

Just remember that the primary endpoint of all of the MS drugs was to slow the formation of lesions as evidenced on MRI. Statistically they were shown to drop the rate of lesion formation. However, that doesn't correlate with slowing disease activity at all. That was convenient, but since you have no lesions on your brain? I would seek counsel at another MS specialist at an MS clinic of at a university like Scorpion said. Many local docs will only 'catch' your diagnosis if it's typical. It sounds like yours is not. Many, many people on here are not either and they had to seek out someone willing to look outside the box. Have you done any Evoked Visual Potential stuff? When I was diagnosed they couldn't use my cranial MRI either, they used a combination of symptoms I was having, my spinal tap, the Evoked Visual tests and finally my spinal MRIs.

Even though you don't have much faith left in trying to find it through doctors, that is alas the only way you'll get a diagnosis as you say already in your posts. I would just keep searching and start at an MS clinic where they are used to not just dealing with rote cases of MS.

It's a real shit sandwich when you're in limbo like you are. Whether it's MS or not, what you are going through is hard to deal with. Especially since you don't have spousal or familial support; that has to be incredibly hard to deal with. That, in and of itself, would be enough to motivate me to not rest until I had a diagnosis. However, I feel you in that 5 years of trying to get it is just a monumental undertaking. Where to find the motivation to keep pursuing? That has to be hard and I don't envy that position. One thing I might try is to educate my wife on symptoms because what you describe sure sounds familiar. That is 100% me not telling you I think you have it. I'm just not qualified to say, but I will say that your symptoms sure SOUND like it.

I'll get pilloried for saying this by some, but if you're at wits end going the traditional route, you could always get an appointment with one of the DR's doing the CCSVI procedure. If it's obvious you have blood flow problems, they could be fixed and, for some anyway, it has really helped. For some anecdotally, a great deal. Shoot me a PM is you want any help getting an appointment to look into this. But it sure seems like you're running into a wall trying to get your diagnosis.

If you had only been searching for six months or so to get a diagnosis, I'd be chock full of things to try. But after 5 years it sounds like you've tried everything one does to get a diagnosis (spinal tap, MRI,etc) but I would make sure you do the EVP tests. If those come back that there is an issue, at least you'll know you have slow nerve conduction which indicates damage to your nervous system by SOME culprit.

One other thing is to see a physiatrist. Not a psychiatrist, that wasn't a misspell. They can do an EMG on you where they can see if you have slow nerve conduction and whether or not you have central nerve damage (probably MS or something), or peripheral nerve damage (something like a pinched nerve or something like that).

Hang in there brother. At your age you have to be scared shitless. I hope you can find some peace of mind and I sure hope you get the support of your loved ones!
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