Non-typical symptoms?

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Non-typical symptoms?

Postby jeepinrebel » Tue Jun 09, 2009 7:03 pm

Hi everyone!

My wife was diagnosed with MS in August 08 after having major migraines and the Dr. requested an MRI. Since the diagnosis she has had these episodes of blacking out. She is not falling unconcious, she is just not remembering up to an hour of time. Lately as the heat here in TX has gotten hotter she has had them more frequently - two this week alone. Has anyone else experienced this? Her neurologist continues to tell us this isn't common with MS and is more than likely a panic or anxiety attack. The only problem I have with that is sometimes they occur when there is nothing to trigger a stress related attack.

She has been on Copaxone since September. Unfortunately each MRI she's had since has contained new lesions. She is scheduled for another tomorrow because her doctor is concerned her MS is progressing rapidly which would indicate it's not recurring remitting is this correct? If so what should we be looking at doing? She is only 33 and this is very hard for her to accept. She has always been the strong one and it kills her to depend on me and my son for simple things like moving the laundry basket.

Sorry to ramble but I'm at my wits end and don't feel like anything is helping at the moment. Thanks for your time!
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Postby jeepinrebel » Tue Jun 09, 2009 7:12 pm

After I read my post I thought I should describe the blackouts more. Here is an example:
We were watching TV and I got up to go play with my son. I returned to the living room to find my wife gone. I found her in our office talking out loud to herself and organizing papers. When I called her name she continued as if I wasn't there. I physically had to pull her attention to me and even then she looked at me as if I wasn't there. Her pupils were dilated and she was talking as if she was a child. She did acknowledge I was there but only to tell me what she was doing step by step. Not really addressing me so much as just using me as a mental place holder.

I convinced her to stop and come sit with me in the living room. She had poor motor control going into the living room. She sat for about 10 minutes and then it was like a light went off and she was completely normal. When I finally had the courage to ask her about what she had done while I was with our son she insisted she had been watching TV the entire time. She did say she had a phone conversation with a friend for 30 min right after I left the room (her cell confirms that). But she did not remember anything after the call to 10 min after I returned her to the living room.

This has happened in one carnation or another just like this at least 10 times since being diagnosed with MS.
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Postby lyndacarol » Tue Jun 09, 2009 7:46 pm

It is difficult to answer your question -- there are many cases of MS which have such differences in the symptoms.

In my opinion, you have identified that the situation is not normal; the next step is to work with a compassionate doctor and search for answers. Your wife MAY have MS. She MAY have another condition -- MS is often misdiagnosed. She may even have MS AND another condition.

Assuming that she does have MS, take a DEEP breath and begin to read all you can about this disease (This website offers LOTS to start with.). Start with a thorough physical exam, keeping your own file with copies of every test result.

You have many new friends here who understand and are willing to answer questions.
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Postby jeepinrebel » Thu Jun 11, 2009 9:42 am

Thanks for the reply.

I have read a ton on MS (probably not as much as I need to still) and she definitely has all the typical MS symptoms. Her MRIs are pretty conclusive as well. So I have no doubt she has MS. I guess my concern is more with the non-typical symptom of the blackouts. She has been through so much the last few years that I was hoping we wouldn't need to look for another problem.

She has had two foot surgeries, a partial hysterectomy, she had her gall bladder removed when she was a child and is scheduled for surgery on her back next week to fix a herniated disc in her L4. She was layed off from the vet clinic she ran for 10 years and had to move on to a new career which she loved. She just recently went on short-term disability at work in order to try to alleviate some stress. She walks with a cane and even then has a hard time. She was hospitalized for four days in December after one of her blackouts where she actually did fall unconcious and when she woke she had not idea of what was going on or had happened.

Anyway I will quit rambling. I just think it may help me to get some of this out since I really have no one to talk to about this. It kills me to see my wife, who is probably the strongest person I know, melting away mentally and physically. I try to stay upbeat when I'm with her but it honestly is getting harder and harder. It doesn't help that I watched my mother go through very similar issues with Lupus since I was about 10 - which is my son's age when this started. Again sorry for rambling and thanks for your help and support.
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Jeepinrebel

Postby lyndacarol » Thu Jun 11, 2009 5:42 pm

You may not realize, but MANY people are reading your posts and understand your situation. You and your wife are already in the thoughts and prayers of those people. We invite you to "ramble" -- we really understand.

I, personally, have not experienced most of the symptoms that your wife has -- no migraines, no blackouts;but I did have a cervical laminectomy (surgery for a herniated disc, which now I think was part of the scarring of my MS -- the scarring prohibited the removal of the disc).

In my own experience and reading, I think a low-carb diet and exercise are the most effective treatment. This stems from my belief that excess insulin (hyperinsulinemia) is fundamental to MS. It follows that I believe that anything that lowers insulin levels will help.It seems to me that this mechanism could account for the improvement reported by Ivy Larson in her book, "The Gold Coast Cure," and in other programs, such as the Swenk diet and the Best Bet Diet.

For that reason, as folks at this website know, I suggest that everyone with MS request a "fasting serum insulin test" from a physician. This is NOT a glucose test; this is an INSULIN test.In fact, it is a good idea to test and establish baseline levels for many things suspected to be involved with MS -- vitamin D3, zinc, even thyroid hormones.

Keep reading, keep searching, keep questioning -- you fit right in here at this website. Welcome again.
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Postby patientx » Thu Jun 11, 2009 8:06 pm

Jeepinrebel:

I've only been at this MS thing for about 1 1/2 years, so I'm still learning that the actual experience of this disease isn't the textbook definition the doctors tell you. But, the blackouts you describe are not commonly a symptom of MS, as far as I know. Your wife may have something else going on, in addition to or instead of the MS. I would try to find a doctor to get some answers about the blackouts. In my opinion, panic/anxiety attacks and stress are cop-outs doctors rely on. I'm not saying that panic attacks can't cause these blackouts - I don't have any medical training. But in my experience, doctors too readily rely on these things when they don't have an easy answer.
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Postby brog64 » Wed Jun 17, 2009 11:49 pm

To me it seems like a seizure disorder. Can you ask your neurologist to run an EEG on her? Seizures don't always involve unconsciousness and twitching. There can be partial seizures or absence seizures which sounds a bit like what your wife may be experiencing (but hey, I'm no doctor!)

These can co-exist with MS.

Best of luck with it and silly as it may sound make sure your doors are secured at night so she can't wander out doors in one of these states.

Belinda
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Postby whyRwehere » Thu Jun 18, 2009 1:27 am

Hi Jeep,
I think your wife may have certain symptoms of MS, but it seems like there is something else. I have not heard of problems like that, what do you call it, because it isn't exactly a mental health issue, but it's something in the head.
You also mention she was at a vet's clinic...see this article:
http://www.uvaldeleadernews.com/article ... /news1.txt
Has she been checked for a brain tumor?
Have you seen the ccsvi forum on here?
Has she been checked for bacterias? (Lyme, CPN, what the vet had....).
Don't settle on the MS diagnosis, because they haven't definitively found out what that is, even....
She's been through a lot, I really hope she gets better!!
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does any one have this problem?

Postby tara97 » Thu Jun 18, 2009 11:32 pm

I was doing the romberg test at home and decided to try it with my eyes open and noticed that the whole upper part of my body sways uncontrolably back and forth quite intensly if I concentrate to stop it the bottom half of my body rocks and my legs shift wieght rapidly back and forth. it is so wierd. I never noticed it before because it doesnt occur when my wieght is shifted on one leg which is how I stand normally. Only when my weight is equal and my feet are together. I come to notice that I when I am sitting straight it also does it. does anyone have this problem?
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Postby rasnet6 » Fri Jun 19, 2009 3:54 am

you know the best piece of advice I was ever given by my neurologist is to never assume a symptom is a result of MS...

always get symptoms checked out, as otherwise you run the risk of ignoring a serious underlying problem, or suffering long term from something you neednt.

So my advice for non typical symptoms is to push the medical profession to confirm or deny their relation to your wifes MS. You never know you may find an easy solution??
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Postby jeepinrebel » Thu Jun 25, 2009 6:23 pm

She has had extensive testing for seizures. When she had her first really bad episode she ended up in the hospital for 4 days. There they tested her for 24 hours on an EEG monitor with video. Then in January they tested her here at home with a 48 hour plus EEG with video monitors (that was fun let me tell you!). Both showed no signs of seizures.

She has also had numerous blood tests and was even sent to an encologist (also known as a hematologist - who knew? :oops: ) just to check for as many rare diseases and virus as they could. Her blood came back normal - well normal for her anyway lol.

I am really starting to think these are onset from stress. I've now seen quite a few and every time except the first time there was some "crisis" going on. This last time her doctors were really pushing her to take short term disability and probably long term disability. She really worried about that. So much she didn't sleep for 4 days and finally had a really bad black out episode. But at the same time I am not just going to drop it at that. I will keep bringing it up every time I see a doctor with her.

So my latest drama is she was faxed a copy of her latest MRI from three weeks ago. The report says compared to January's MRI she has numerous new lesions with 4-5 that they feel are very large. She has been on Capazone now since September. She has an appt with the neurologist next Thursday. Should we be looking to try something different? We are already examining the dietary ideas I have found here. They will be difficult since we have a growing, always hungry 11 year old boy around, but I am willing to try anything just about.

Also Thanks everyone for taking the time out to read and respond, it is very much appreciated!
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