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Old 10-04-2020, 02:21 AM #1
quadbkat quadbkat is offline
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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 ??
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Old 10-04-2020, 02:52 AM #2
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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...
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Old 10-04-2020, 10:25 AM #3
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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.
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MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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Old 10-04-2020, 02:57 PM #4
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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.
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Old 10-04-2020, 03:03 PM #5
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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.
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Old 10-05-2020, 07:00 AM #6
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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.
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Old 10-05-2020, 10:13 AM #7
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Diamond Tiger <3, I hope you can find a way to deal with the Tarlov cysts.

When you said

Quote:
Had it been MS it would have only taken a few months to be diagnosed.
,

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.
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Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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Old 10-13-2020, 01:35 AM #8
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Quote:
Originally Posted by agate View Post
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
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Old 10-13-2020, 01:53 AM #9
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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.
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Repeal the law of gravity!

MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24
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