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Old 12-04-2008, 02:48 PM   #1
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How long did it take you to be diagnosed?what did the tests show? what were your sx?

Hi All,
I am still trying to work out why my dr has not diagnosed me with MS despite me having very common sx associated with MS.

When i first got ill, I had lots of high levels of inflammation in my blood and high IGG/IGM antibodies. They all have gone back to normal now. Do you think it is possible to pass through the relapsing remitting stage of MS to the secondary stage which is not inflammatory led? If so would it definitely show up on an MRI scan and Lumber punch at that stage? Would I have lots of lesions on the brain and have motor nerve problems?

I have 2 white spots on my MRI only, (but I have never had it done with contrast) I am almost sure I have MS as the sx are so bad, I just don't understand why I am not getting the confirmation in the medical tests....do you reckon it is because all my sx are sensory??

I would like to hear about other people's experience of getting diagnosed, what showed up on your tests? what were your Sx at the time? and did has it taken anyone over 10 years to get a diagnosis?

Last edited by hamfrie; 12-04-2008 at 02:48 PM.

 
Old 12-04-2008, 04:36 PM   #2
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Many doctors worry about a misdiagnosis- especially in the litigious society we now inhabit. I just read about a woman who has had MS for 40 years, but she did not get her diagnosis until she turned 70 years old. Although you might think "MS", a neurologist has to think "MS or ???". Symptoms of MS can also present with other diseases.

I was diagnosed in 1982. From the time I presented with my symptoms until diagnosis was 2 months. I was lucky that the chief neurologist was my doctor and he ran the gauntlet of tests in 3 days. I even had an early MRI. (LOL, the MRI then was like the invented wheel, but I am glad I was a test case!). I had my diagnosis on the third day.

Sooooo, you can see a wide difference in time to diagnosis. In fact, in hindsight, my symptoms started when I was 14. I had lived with it for 5 years without knowing. The Lord used a 2 X 8 to get my attention in 1982 because the 2 X 4 in 1977 failed to get my attention.

The good news is that MS diagnosis nowadays is lightyears beyond where it was. (insert 5 foot snow drifts uphill both ways..... ) Well, any way, stay proactive and run the tests. Your neurologist will get to a diagnosis. You want to be sure of your diagnosis before you start any meds. I have not used meds for 30 years (26 since my diagnosis).

 
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Old 12-04-2008, 06:47 PM   #3
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

There is NO blood test that will indicate MS. Blood work is used to check for other things. There are 100 other conditions that can have symptoms similar to MS and some of them also cause lesions.

My story:

I went to my PCP because I was having extreme difficulty walking, L'Hermittes, extreme fatigue, numb from the waist down, vibrations/buzzing, weakness in the extremities and extreme pain.

My PCP said he could not help me and handed me a referral to a neurologist. Once I started seeing the neurologist I was diagnosed in about 3 months.

Diagnosis was based on a positive Lumbar Puncture (LP), neuro exam and symptoms. I have has symptoms since childhood and diagnosed at the age of 25.
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Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Old 12-04-2008, 07:00 PM   #4
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

my first symptoms were a little bit of dizziness when i'd turn my head to look left or right when driving, then when i was working out, noticed that my right knee wouldn't bend smoothly, it jerked! went to my pcp, he referred me to every single kind of specialist, including heart, ear,nose,throat, had an ekg, eeg, etc, but the one that found anything was the last one, a neuro, he looked at my mri's & said i've probably had ut since i was a teenager! and i was 29 at the time, with no previous symptoms! it hit all at once like a ton of bricks, but by then i had an office job & was able to keep working for another 4 yrs

Last edited by Administrator; 04-26-2009 at 04:15 PM.

 
Old 12-05-2008, 02:56 AM   #5
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Thanks everyone for your replies, I really appreciate it.
Jay: no meds for 30 years, what made you decide not to take them? I suppose back then they were not so effective. Are you in a progressive phase after 30 years (If you don't mind me asking) whats is the average EDSS when people go into a secondary phase? (if you know)

Snoopy: in the last 4 days I have developed L'hermittes but there is a general vibration down the bottom of my spine when I am sitting normally so both you and Jay were diagnosed quickly...

Lib: so when you had your MRI scan were there lots of lesions? did you get diagnosed with RR?

Thanks again for your responses

Last edited by hamfrie; 04-26-2009 at 12:55 AM.

 
Old 12-05-2008, 03:40 AM   #6
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Yes, I was diagnosed relatively quickly but I was in the middle of a very severe exacerbation (relapse) that did not remit during the diagnostic process.

Note: L'Hermittes is not exclusive to MS and does have other causes.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

Last edited by Administrator; 04-26-2009 at 04:15 PM.

 
Old 12-05-2008, 09:08 AM   #7
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

I was diagnosed with "possible ms", officially by my first neurologist...he told me that he only wrote that because if he wrote "definite", insurance companies here in america would never take me! but, he said it was definite. And i was diagnosed VERY quickly, in my opinion! went to my pcp in july 1994...found out after my mri in september 1994! i don't know how many lesions i have, but i do know that most of them are on my cerebellum, which, when my pcp got the mri & looked at it with me, he sat down & buried his face in his hands, shaking his head, & said that's the worst place for them!

Last edited by Administrator; 04-26-2009 at 04:15 PM.

 
Old 12-05-2008, 09:31 AM   #8
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Following diagnosis in 1982, steroids were the main med. I did not want them and my doctor told me that I would be better off without meds. The steroids could not be used for more than 2 years. I chose to live without the cost of medications to treat the symptoms as well as the adverse side effects. I followed the Swank Diet.

I am progressive, BUT progression and stage shifts in progression are not definite based on length of disease. There are people who can live their lives in a relapse remitting mode. Doctors measure progression by the relapses. Progressive for me means that I live daily with my symptoms without any "normal" times to recover. (I choose to call my good days normal regardless of the symptoms). For me, a really bad day is my abnormal day.

My choice to go med free was a personal choice I made by myself. My neurologist still sees me every 6 months and is fully supportive of my med free life. She is fascinated with the different methods I have arrived at when resolving muscle/nerve pain.

Whatever choice you make, make it for you. Looking back, I have had no regrets in choosing med-free. I am blessed and believe that God has blessed me greatly. I try not to let MS get in my life, but because I have it, I have learned to avoid the triggers and follow adequate rules to prevent increasing the disease progressions. Sure I am worse than 6 years prior, BUT in many ways I am better. That is, I have 6 years of experience in learning my triggers.

My doctor shared this with me:
Pro-Active REST instead of Re-Active COLLAPSE

and the 4 P's

PACING
PRIORITIZATION
PLANNING
POSITIONING

Blessings to you!

Last edited by Administrator; 04-26-2009 at 04:14 PM.

 
Old 12-05-2008, 10:57 AM   #9
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Thanks Jay...I should live by those rules...I am definitely the type of person who "over does" things...as soon as I feel a bit better I do way too much, I am trying to learn not to do this.

I am not over familiar with the "swank diet" but when I got ill, I stopped eating wheat and dairy and included lots of healthy foods and supplements. I have noticed that everytime I go off this diet I get an attack of something. Also stress is a major trigger for me.

I live everyday with all my Sx (the numbness and fatigue, visual probs), I have not had a day where I felt like I did before (before I got ill). I do remember when I first got ill not being ill in between and have totally normal days (that was about 8 years ago)

Before a person is progressive would they have multiple lesions on the MRI scan? Can a person like me be already progressive with an EDSS of 1? or to be progressive must you be further along the scale?

Other than the Swank diet what else have you been doing?

Thanks for taking the time to write

Last edited by Administrator; 04-26-2009 at 04:14 PM.

 
Old 12-05-2008, 11:20 AM   #10
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

The number of lesions does not rate the progress. The time between attacks is the main factor. You might check with the MS Society there as well as searching the internet for "MS Types". I know there is a chart available that separates the MS types and is quite simple to understand.

Dr. Swank developed the Swank Diet in Germany for his MS patients. The main thing I had to change was beef. I stopped eating it for one year and only ate the light chicken/turkey or light pork (I also ate rabbit, venison, squirrel, game birds-light meat, and fish). After one year, the Swank diet allows 3 oz of red meat each week. For me, I went 4 years without beef. After tasting it once, I have come to dislike it. I have avoided the beef since.

Stress, my doctor told me in 1982, was the worst thing for a MS patient. He told me that if I did not avoid the stress, my MS would kill me. I learned to "let go and let God". There are things in life over which we have no control. For those things, I have learned not to worry about them. Also, I worry (if I worry )only about the big things. The little things in life tend to sort themselves out.

In the past 6 years I have found most of my triggers. The main trigger I can not control is a seasonal trigger. I experience a downturn in December and again in May. No date is specific, but the only commonality is the seasonal shifts.

Temperatures are a major trigger for me as is physical exhaustion. I wear a cooling vest for the summer or avoid going out in the heat of the day. In the winter I get hit when the temperatures fall below 52 degrees Farenheit. (For me my best range is 53-73/75 degrees Farenheit). I keep the thermostat on the house at 68 during the day and 62-64 at night. These have all worked for me. I am sure that you can determine your optimal range .

 
Old 12-08-2008, 05:00 AM   #11
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Its weird with temperature with me, I live in the UK and it is always cold here.
I always feel so much better sitting out in the sun, relaxing. However hot baths make me a lot worse. AlsoI don't knw if anyone else has experienced this but when I hve things like a leg wax or anything that stimulates pain, I am numb in that area for a good few hours after....

 
Old 12-08-2008, 07:10 AM   #12
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Hot baths are not good. My original neurologist told me that the worst area to "heat up" would be from my shoulders up. I found that for the most part this was true. It took a major lifestyle change for me and dips in the Japanese onsen was out.

I can well understand sunning yourself in England due to the cold and dampness prevelant in many areas. I remember traveling there for 2 weeks and the sun only peeked out my last day! No, I do not know what it is like to have my legs waxed nor do I plan to do so!! LOL. Still I can understand the numbness you experience following the procedure as far as stimulated pain.

I think you are well on your way to discovering your triggers and what to avoid.

 
Old 12-08-2008, 04:01 PM   #13
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

My first symptoms were fatigue, a stabbing pain in my back and constant L'hermittes. I thought I had a pinched nerve, and I barely considered the fatigue, since that could be anything. To make a long story short, I had an MRI of the brain that showed many more lesions than one I had a few years earlier. My PCP sent me to an MS specialist, and he confirmed the dx. I never needed a lumbar puncture, but I did get bloodwork and x-rays to rule everything else out. I also had a nerve conduction study, which showed nerve damage in my left leg. That test did not rule in or out MS, it was just another piece to the puzzle. Looking back, I've had symptoms since my teens, but they were never enough to send me to the doctor.

I also have problems with temperature, but heat is the worst. I used to take hot baths a lot, until I was a prune, but no more. Now it is very cold here, and I can't sleep if the thermostat is higher than 63 degrees. Heat makes my symptoms worse. Extreme cold does the same, but it's not as pronounced. At least I'm saving on my gas bill!

I get the waxing thing. I wax my eyebrows, and afterwards I'm numb there for a few hours. I guess it beats pain though, and I don't need my eyebrow area to function.

I changed my diet a few years ago, before my diagnosis, after my husband had a heart attack. We basically follow the American Heart Association diet, but I do cheat sometimes. It does have some similarities to the Swank diet. All I know is that I've felt better since that change, and my husband hasn't needed heart meds since two months after his attack. His cholesterol and blood pressure are perfect now. The diet gave me more energy too.

I also do what my Italian grandmother always said--to eat food when it's fresh, in-season, and locally grown. Avoiding pesticides can't hurt. My husband is from the UK (Oxford) and the diet has been harder on him. I've made a few steak and liver pies for him since his heart attack, but not many!

Jayhawk, I love the advice you gave on the 4 P's. I've never heard that, and I'm going to remember that! Doesn't it seem like MS hits Type A people, or is it just me?
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Avonex started 11/07,
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Last edited by Administrator; 04-26-2009 at 04:14 PM.

 
Old 12-09-2008, 08:03 AM   #14
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

I was dxed because I was having a problem with my eye. Turned out to be Optic Neuritis. Had no clue what was going on or what this was. I was sent for an MRI of the brain (also had one of the optics) and lesions were found. I was shocked -- it was very hard to believe I had MS. I did have tingling and some other sensory sx but nothing that I couldn't (or didn't) ignore for a long time. In retrospect (ONLY) it's possible that there were other things over the years that might have been MS related, including some bouts with vertigo over a period of about 18 months -- but that occurred probably 17 years before!!!! But, based on history, my MS specialist thinks I've had MS for a very long time. BUT -- there is no way to know for sure. I still have sx that I know now are MS related but nothing so bothersome that it doesn't interfere with my everyday life. I can't predict what the future will hold (as none of us can) but I am very grateful. MS comes in all different packages and I personally believe that there are a lot more subsets than are currently recognized AND also that we did not all get here the same way. It's a very mysterious disease and although none of us want to have it, it sure is interesting!!
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Last edited by Administrator; 04-26-2009 at 04:13 PM.

 
Old 12-09-2008, 02:40 PM   #15
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Re: How long did it take you to be diagnosed?what did the tests show? what were your

Hi,
I also have my eyebrows waxed and it is horrible! I suffer from spasms in my arms and back and lately when I have my eybrows waxed and tweezed I get spasms in my back which is painful and makes me squirm alot. I've had an incredibly stessful couple of months and I think it is exacerbated by this, it wasn't always painful.

I am also on a dairy, meat and gluten free diet. I've never eaten meat and I know from a couple of early slip ups that dairy is a major contributor for me. I had a buzzy fuzziness and bad sense of touch in my left hand from my first attack. After my new diet it went away (after 1 and 1/2 years). As soon as I eat dairy, even as an ingredient, the buzzing comes back. It's so pronounced that at the beginning, when I felt it, if I looked back over what I'd eaten that day, I'd find dairy in it somewhere. Since I've gotten used to the diet and know what dairy is in, I haven't had the buzzing at all. And it was a constant symptom for so long!

You will get to know your own symptoms and triggers over time. Dairy doesn't affect everyone. But I still believe (almost 2 years after dx) that giving it up has been the best thing for me and my symotoms.

Cat

 
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