What are your flare ups/attack like?

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Booklvr
Regular Member


Date Joined Mar 2012
Total Posts : 139
   Posted 4/5/2017 7:22 PM (GMT -6)   
Hi... I'm new here. I just got my MRI result. 4 lesions on my brain. For several years I have been diagnosed with fibromyalgia. Now it appears that it's not fibro and likely is MS. I'm waiting on seeing the neurologist. So far I have just seen my GP.

What happens when you get a flare up/attack? I'm asking so I can compare to my own symptoms.

I get flare ups fairly often. Always when I over exert myself either physically or mentally. I get bad pain in my shoulder, neck and head. My face hurts. I also have severe fatigue. I have to remain very still as no meds work so far. This happens monthly. More if I overdo it or because of fluxuating weather. Sometimes this lasts for 3 days.

On a day to day I have dizziness. Very weak leg muscles and a general weakness all over. I get weird muscle spasms all over. Jerky things that are unpredictable. Fatigue is part of each day along with lots of overall soft tissue and joint pain.

That's it in a nutshell. I'm on meds for fibromyalgia (Lyrica) but it doesn't work well and the side effects ar BAD!

I'd appreciate hearing from you. Thanks
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Fibromayalgia, Chronic Fatigue Syndrome, Periodic Limb Movement Disorder, Insomnia, Hashimoto Disease, Endometriosis, Pernicious Anemia

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 236
   Posted 4/5/2017 8:48 PM (GMT -6)   
Hi Booklvr,

It's important to not assume you have Multiple Sclerosis until you have an actual diagnosis. There is no single test, by it's self, that will give a definite diagnosis of MS. Lesions found on MRI can have many causes, sometimes it's MS and sometimes it's not. When you see the Neurologist you will probably have other testing done as well as a Neurological exam/evaluation.

A relapse (exacerbation, attack, flare-up) all mean the same thing; old and/or new symptoms lasting continuously for more than 24 hours. Exacerbations can last weeks with recovery taking longer. It's not a new exacerbation unless it's separated from the previous one by 30 days.

Each person experiences exacerbations differently and depends on what part of the Central Nervous System is affected. For this reason it's impossible to compare exacerbations.

I don't mind explaining what my exacerbations are like but I don't think it would be helpful for you especially when you don't know if you have MS. If you still want to know just ask I will tell you smile

When is your appointment with the Neurologist?
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Booklvr
Regular Member


Date Joined Mar 2012
Total Posts : 139
   Posted 4/5/2017 8:55 PM (GMT -6)   
Hi
Yes I would still like to know. My GP said it is likely the early stages of MS. I don't know what he means by early stages.

I'm in Canada do I have no idea when I'll see a neurologist. The GP did the referral and that puts me on a list which can take anywhere from 1 month to a year to get in. No one knows or will say how long it takes. I also have no choice about which specialist to see.

I'm so symptomatic that it's very frustrating to be this way constantly. I forgot to mention about the memory loss.... terrible!... and tremors/shakes. I have to use a motorized scooter for long distances. Walking more than 10 - 20 mins is often too much.

I'm just looking for information. I appreciate your reply.
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Fibromayalgia, Chronic Fatigue Syndrome, Periodic Limb Movement Disorder, Insomnia, Hashimoto Disease, Endometriosis, Pernicious Anemia

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 236
   Posted 4/5/2017 9:17 PM (GMT -6)   
My symptoms during an exacerbation:
- Numb from the waist down
- Bilateral leg weakness
- Loss of mobility - unable to do more than try and get around my home
- Severe fatigue
- Vibration/buzzing from the waist down including the girlie parts
- Severe pain ( Allodynia)
- Pins and needles in legs bilaterally
- Hand tremors
- Lhermitte's sign

My exacerbations last 4 to 6 weeks and recovery for mobility can take a year.

I would like to stress you may or may not have MS. Simply having symptoms that might be MS isn't enough. Many conditions, vitamin/mineral deficiencies, some medications and mental health problems all have similar symptoms as those seen in Multiple Sclerosis. There is a diagnostic criteria for MS, The Revised McDonald Criteria. Part of the criteria requires all other possibilities for a person's symptoms need to be ruled out.

Hope you get answers soon.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Booklvr
Regular Member


Date Joined Mar 2012
Total Posts : 139
   Posted 4/5/2017 11:09 PM (GMT -6)   
Thanks for that info. I checked on the Revised McDonald Criteria. I already tested positive for Hashimoto Disease and Pernicious Anemia. I'm stable for both now using meds.

I meet the criteria from the Revised McDonald Criteria regarding attacks and brain lesions. So... just waiting to see what the neurologist says. The only other thing I could find that it might be is Lyme disease, but I'm not a total match for that.

Anyway thanks for the input.
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Fibromayalgia, Chronic Fatigue Syndrome, Periodic Limb Movement Disorder, Insomnia, Hashimoto Disease, Endometriosis, Pernicious Anemia

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 236
   Posted 4/6/2017 7:41 AM (GMT -6)   
I would like to stress that until you see a Neurologist, have a Neurological exam/evaluation, and other testing there is no way to know if what you have is MS or not.

The problem with brain lesions is they can be caused by different things and not necessarily due to Multiple Sclerosis. The other problem is your "attacks." Many different conditions present like MS, including attacks, but is not MS.

Are your lesions demyelinating lesions? If all you know is you have lesions then they may not be caused by MS. Try not to assume you meet the criteria, it's not always as easy as one may think. There are many other conditions to rule in/out not including what you have already been diagnosed with.

Please let us know how your Neurology appointment goes smile
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.
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