what were your earliest symptoms, that first made you or the doctor think it was MS ???



and how long after that were you actually diagnosed with MS ??

Both of my legs and feet went numb during 2 months, constantly - that was the main symptom. Worse when walking, better when resting. I had also a numbness band in my lower right trunk.

I began with these symptoms in April and by June I was fully diagnosed. MS is so variable it can take from months to years to diagnose, as some people begin with very mild symptoms and they usually recover. If I hadn't insisted I would still undiagnosed today because the numbness went away and you just feel ok again.
And some people avoid the doctor until the situation gets really bad, so...

In my mid-30s I started falling down a lot. Sometimes I broke bones. They were weird falls because they seemed so fast. I was just slammed down--no time to catch myself somehow.

At the same time I was having strange eye problems--blurred vision being the easiest one to cope with. Others came on very suddenly: sudden complete loss of the lower half of the visual field (which caused some of the falls), or huge black areas in the visual field, and sudden episodes where my eyes seemed to be whirling around in my head.

There were some bladder problems too.

Actually what was probably the first indicator was a fall I had when I was 20 but no one thought about MS at that time. I had an episode of severe vertigo, fell face forward, and knocked out several front teeth. The vertigo came back a couple of times years later, in much milder form, but again no one thought of MS.

I will speak for my sister and her first signs were in her very early 20's, she was dropping pen/pencil out of hand...went to doctors and only one said "maybe MS"....

She went on to do a very stressful busy life and full blown MS hit her probably in her later 40's...

I believe sugars and carbs were her downfall but these were her addictions as I see it all now. I really tried to help her and give her info on alternatives but she did not want to hear me, only her MS docs and all their drugs, and believe me too too many as I believe.

She lost the battle at 68.

Keep an open mind and look at all therapies and I'm not saying don't hear the doctors...but they don't have all the answers for our bodies.

Take care.

Hi quadbkat.

I see you have spine problems, I'm very sorry

I am curious what has brought you to the Multiple Sclerosis forum, if you don't mind my asking.

In my case I have had symptoms of MS since I was a child (unknowingly). I went to see my PCP at the age of 23 when I was experiencing my first severe exacerbation (unaware of what was happening). Symptoms were many, scary and debilitating.

I was referred to a Neurologist immediately and diagnosed 3 months after starting the diagnostic process.

MS has a diagnostic criteria (The Revised McDonald Criteria) and cannot be determined by symptoms alone ---
http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

The symptoms of MS can mimic many other conditions. All other possible causes for a person's symptoms would need to be ruled in/out and positive testing which would indicate MS as a possibility. There is no symptom exclusive to this disease.

If you are concerned about MS please seek out a Neurologist for a Neurological exam/evaluation as well as all testing needed.

Take care.

I was experiencing many symptoms of MS about 5 years ago and wasn't sure what was going on with me. I have had spine surgery on my lumbar. Many of my symptoms mimic MS but could also be explained to my spine. I saw a neurologist and that was one of his first theories. Within a couple of months after ruling out many other possibilities, he ordered a spinal tap that would be the definitive answer. The test came back negative thankfully. However, after having a updated MRI, I found out I have Tarlov Cysts in both my sacral and thoracic spine.

Over the last few months my symptoms have become worse. Another MRI was ordered on my spine. Now, I have a bilateral cyst. One cyst measured 1.5cm and is compressing a couple of my nerve roots. Which is what originally brought me here to NeuroTalk. When I was first dx with the Tarlov Cysts, I didn't do much research on it. As I was told by a couple of my physicians nothing can be done without great risks involved. I left it alone. I have recently researched it more over the past few months to learn more because of a flare up of symptoms. I now understand why my neurologist first thought it was MS. Had it been MS it would have only taken a few months to be diagnosed.

Diamond Tiger <3, I hope you can find a way to deal with the Tarlov cysts.

When you said

,

I was surprised. I've become acquainted with quite a few people with MS over the years--and unfortunately there are many instances where people wait around undiagnosed for years, not knowing why they're having symptoms that are often disabling. The diagnosis isn't always so easy.

Hello, I hope you are doing well. To be honest I was surprised too after reading on the condition. I guess in my scenario was different because I was under a physician's care after going through my spine surgery and the after effects from it being under pain management.

When the symptoms began that made my physicians theorize it could be MS, it was much different from the symptoms I had been experiencing for several years at this point. I'm 39 currently. At the time of the MVAs I was in, I was barely 22. That caused my back injurybthat took nearly 5 years to get dx and fixed.
It was dragged out after seeking out many different doctors in different specialties to dx my spine injury. After having several scans done, all of them came back clean. Because of this, the door got shut on me per se in the sense of being told I was crazy or a addict. It took a new physician who listened to me and understood that something major had to be wrong after explaining how active I was and the competitive sports I also played besides working on my feet all day too. It got to a point I could no longer do these things any longer. To make a long story shirt as best as I can, it took a specialized test to show I had a grade 4 tear in a disc on a scale of 1-5, 5 being the worst. After finally getting the dx and having surgery, many physicians realized how wrong they were and listened to me whenever I complained, in which, I rarely did after my surgery. So, when the new symptoms began, I learned to be in tune with my body over the years and the doctors also learned to trust and listen to me. That is how it would have been dx so quickly had it been MS. I hope this answers your question.

Best wishes,

Diamond Tiger

Sometimes it takes a long time to find a doctor who is on the same page as you're on, who has a sense of where you're coming from. Some doctors just don't have that skill even though they may be really adept in other skills they also need if they're going to be decent doctors.

I'm not sure why so many people with MS have to wait a long time for a diagnosis. It must be a difficult disorder to diagnose, with lots of look-alike diseases to choose from. Then, too, some doctors tend to take women patients' symptoms less seriously than they do men's, and MS seems to affect woman more often than men.

I suspect that some doctors just don't want to diagnose MS because they can't offer us much by way of a remedy or cure, and they don't want to be stuck filling out lots of forms for the next several decades for an MS patient who needs to apply for a disability pension or handicapped parking or whatever. They'd really prefer to have patients with a more challenging diagnosis, something interesting that they can write up in a medical journal. To a neurologist, a case of MS is very ho-hum because it's a fairly common neurological disease.

I'm glad you were able to find the medical attention you needed and it sounds as if you now realize that you and your doctor(s) can work together as a team.

I do agree there are many doctors who don't want to take the time to do exactly what they went to medical school to do, which is, to help people and heal them of any ailments. There are many doctors who lack a bedside manner.

In my case I guess I made it easier on the new doctors I saw after my spine surgery and firing most of those doctors who chose to ignore my symptoms and help me. But, before I fired them I went back to see everyone of them to show them how wrong they were in the hopes in the furure that what happened to me would not happen to anyone else who came to them for help and to be treated with a open mind.

As a woman myself, I do understand what you are saying in the difference of how many of us are treated in comparison to men. My loved ones say I can be intimidating being a young strong attractive woman. I have the physical appearance of being prissy or another word is, fragile. I do not appear to look like a tomboy as I very much am. I dress up nicely 99% of the time wearing high heels with long fancy finger nails and jewelry. Most would never think that I grew up running around climbing trees to playing football with my younger brother or having a great love and interest in cars. Nor, would most who do not know me ever think I'm capable of lifting heavy furniture by myself or picking up a bowling ball or a billiards pool cue and playing competitively. In my case alone I can get how many doctors wouldn't take me seriously based solely on my appearance.

The doctor who helped me by performing the specialized test to dx the spinal injury understood this about me. He and his wife who was his nurse and office manager took the extra time to get to know me. After explaining to them my upbringing and bowling since I was in diapers. Plus, my parents were semi pro bowlers. My mom was given the oppurtunity to become a full time pro bowler and was asked to join the pro tour. Both of them realized I can handle a lot of pain and not a big baby.

My ultimate goal after my back injury was to return back to working, bowling, and billards pool. I wanted to follow in my parents footsteps and look at possibly becoming a pro just as they had. When the MVAs happened and I had to quit competing up until after I had my surgery, they also wanted to see the same for me and were willing to do everything in their power to help me reach my goal. I had to express to them to not just stick me inside a box. It woyld be wise for them to think outside the box also when it comes to me from past experiences when I was younger. Thankfully they agreed and dod every test they could think of doing from PET scans down to bone scans. The actual test that dx the ruptured disc is a discogram.

It is so frustrating at how doctors never thought of performing this test. None of the doctors prior had ever mentioned this test. As you can imagine I was upset about this. Had the doctors kept a open mind and chose to really help me, I would not have been in that kind of pain for close to 4 years. I may not have ended up with as much nerve damage either.

With the nerve damage the ruptured disc was not the sole cause of it. I was also dx with having a split piriformis muscle that was pinching the sciatic nerve. I had to have surgery to cut one side of that muscle to release the sciatic nerve. If that wasn't enough, now comes the most recent dx of Tarlov Cysts that is conoressing my nerves too.

Only after these surgeries and doing pretty good afterwards up until I had a bad flare up but it being much more than that was when the MS possibility came into consideration. Now, I also learned the Tarlov Cysts were present when I had my spine surgery but my surgeon never mentioned this to me, nor, did he do anything about it when he was repairing my back. I learned later why he didn't do anything for the cysts and I agree with that.

What I disagree with is failing to mention this fact to me. I wonder more now how many times has something like this happened to people when a physicians fails to disclose that information. The saying is that doctors know best. In sone way this is true but not completely. The best doctor of your body is yourself.

My suggestion to everyone is, seek out help from as many physicians as it takes to help and dx the problems. Your own body says something is wrong, listen to it. Do not accept 1 doctor's answer. Get multiple opinions. Just because there may not be a cure for your condition does not mean to not get help. There may be treatments that can help. Just like MS, there isn't a cure for Tarlov Cysts either. I can relate to this issue. It does not stop me from getting help. I plan on returning back to bowling and billards pool competitively again once I come to a point my condition calms down as best as I can get it to.

Best wishes,

Diamond Tiger