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HELP ! Please read my post and give me some of your knowledge
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usedtotri posted:
Hello everyone,

I am so sorry many of you have MS. It seems terrible. I am struggling for a diagnosis of some sort but, can't seem to find any answers. I went from a recreational triathlete, completing 5 triathlons in a Summer season to being absolutely exhausted. I figured I was just overtrained but it lasted from late August right on into winter. Depression right? Yes a little, I live in Michigan but I spent 5 weeks in sunny Texas and Florida and have felt depression before-this wasn't it.

This March I became VERY exhausted and had extreme all over pain after raking my yard for about 10 minutes, it happened again and again. Prednisone in a burst helped a lot. I was on pain meds but then needed none. Until the Prednisone was done, then the pain came back. At the same time I developed some of the classic MS symptoms, top hits on medical search sites. MRI shows no MS.

I have had increasing pain, always starting in the right foot. The pain comes with weakness and shaking if it gets too far along. I've increased all the way up to 60 Morphine ER 4-5 times per day to manage the pain. I have tried to reduce pain relievers all along but we just keep increasing doses. I have NO answers and NEED help. I have a Rheumatology appointment, Neurology follow-up and pending appointments (on hold) at Mayo and Cleveland Clinic.

Can anyone ask me questions, shoot me some ideas? I go from playing with my boys (albeit tired and in some pain), appearing normal to the neighbors to being driven home from vacation laying in the back seat of my car absolutely sick and in pain. "He looks OK to me" "He seemed fine the other day" "He just needs to get off of those meds" And yet I've rolled out of bed, pissed my pants and crawled to the phone for help in so much pain. HELP? Anyone? I think I have MS but, the doctors just don't have it diagnosed yet. I saw a rheumatologist who listened to me for the first part of my story, about 2 minutes, and said I had Fibromyalgia (by the way she never touched me) so I got up and left her office.

A neurologist says something is severely wrong and he has some ideas but the test he did, an EMG showed nothing. The EMG doctor said "you've definitely got something going on." But I don't know what it is, yet. And the next tests, you don't want me to do right now."

OK, your turn. Anyone? Even an I feel your pain would be nice.
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hackwriter responded:
Dear usedtotri,

You are doing all the right things to find answers, and how well I know the anguish and frustration that goes along with this journey.

An EMG measures electrical signals in the muscles that might indicate peripheral nerve damage, which MS does not cause. My EMGs were normal, which for me ultimately meant that the damage was occurring in the central nervous system rather than the peripheral. A positive EMG doesn't rule out MS, however, and a negative one doesn't confirm an MS diagnosis either. An MS diagnosis is a result of several kinds of test results (emphasis on MRIs), clinical evidence and history. It's a tough one, and doctors have their work cut out for them.

So many other conditions must be ruled out, not the least of which are diseases such as Fibromyalgia, RA, Lupus (rheumatology stuff) as well as diabetes, stroke, Lyme disease, and a host of others. If it is MS, you'll be hard-pressed to get a diagnosis without the presence of lesions in the brain or spine. Our MRIs are limited in that they do not pick up cortical gray matter damage or very small, scattered white matter lesions and inflammation. So you could in fact have them, but it might take some time for larger ones to show up on a scan.

It's a waiting game for so many of us. I first presented with symptoms and two cervical lesions, yet I didn't get the MS dx for six more years. The criteria for Relapsing/Remitting MS generally require two separate flares and two or three lesions in brain/spine that develop over a period of time, plus a lumbar puncture positive for a certain number of oligoclonal bands.

So keep an open mind about possible causes, keep those MS clinic appointments, keep researching, and keep pushing for answers. I hope you'll give us an update on your appointment results. And do please come back to vent and ask questions, that's what we're here for.

Kim
 
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swampster1952 responded:
Hello usedto,

Yeh, I "used to" do all sorts of things before the MS got its claws into me. Now I can barely do anything. At least pain is not too big of a problem for me.

As Kim said, keep your appt. with the Mayo clinic. Get to the bottom of this so you can start treating what ever it is that you have. Remember, we are our own best health advocate so keep on pushing until you get some answers that make sense to you.

Best,

Dave
 
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xperky responded:
Hi usetotri. Here's an "I feel your pain" for you! But, literally, I might feel some of your pain. My right foot also gives me lots of trouble. It doesn't like to be stood on or walked on much. Over time the left foot and hands and other spots have become troublesome.

My story is somewhat like yours. Very active person, then - bam - pains, numbness and fatigue. Got the "possible MS" diagnosis after a series of tests.

Long story short, after various episodes, and over 3 years, I have the FM, RA, OA and still possible MS diagnoses.

By the way, many people have FM along with auto-immune diseases. It can be quite debilitating on its own, never mind when combined with other ailments. It might be worth trying some FM treatments, just to increase your quality of life while you keep looking for more answers. Some people have it so bad they become disabled.

Good luck on your search for answers. It can be a lengthy search.
 
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rickander responded:
a spinal tap will definatly tell you if you have MS., or go find a good neoroligist to get a MRI and some advice
 
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feelurpain replied to rickander's response:
This is not necessarily true. My Spinal tap came back positive for MS and I have 5 brain lesions and one small plaque and my neurologist still hasn't diagnosed me with MS due to lack of other symptoms. But they are treating me for MS. It's frustrating not knowing for sure. I need peace of mind so I can try and move on with life. My advice is to just keep going to Nero and dont give up.

Since I have memory issues now as well I have been writing down all symptoms and issue's I have every day to give the Doc next time I see him.


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