Leg ms, brainstem ms, cognitive ms, what type is yours?

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Leg ms, brainstem ms, cognitive ms, what type is yours?

Postby Athina » Sun Jan 01, 2012 5:11 am

Ms is a highly variable disease. In other words, in different people ms presents itself in very differing ways. Two people with ms may not have much in common as regards symptoms, degree of disability, pace of progression, severity of the attacks and so on.

How would you describe your version of ms?

Let me start. I have had ms for roughly six years. I am a woman of late thirties.

Firstly, i would say that my ms is foremost presenting itself as the dysfunction of alertness and circadian rhythms, read daytime fatigue and sleeplessness at night.

The second problem is autonomic dysfunction. Heartbeat irregularities, regulation of perspiration, severe adult acne, constipation. Thirdly I have intense pain episodes in my jaw/cheek/neck area. It looks like it could be classified as atypical trigeminal neuralgia.

Also I have problems with hearing loss and episodes of nausea.

I do have some cognitive problems but my basic ability is good, so thus far I don't have a problem with this. But for years I have had problems with irritation, concentration and I find noisy environments with a lot of crowds increasingly unpleasant. Multitasking has always been unpleasant, too. In this sense, I have always been "a mental male", I guess! But I think these count as cognitive problems anyway.

Psychologically my mood has always been pretty volatile, up and down. Diagnosed with depression, though. Who would'nt be, with this disease. On SNRI pills.

I guess my ms is different from the standard as I don't have much problems with eyesight so far, nor with walking.

These six years have been very frustrating because neurologists and doctors are so hooked up with ms being a primarily a mobility issue. WHich is not always the case. I mostly look well, no one could see that there is something wrong with me. But when someone gets to spend more time with me, s/he will notice that I get easily tired, have to rest a lot, might become suddenly
fatigued, have to cancel activities often, have to take pain and other meds often, want to spend most of my time in peace and quiet.

My ms is classified as rather active, lots of lesions, still relapsing-remitting, still no permanent disabilities really. I have been two years on temporary disability pension. Most of the time doing ok. Haven't been on dmds. Five times pulse steroids.

I would really like to hear how you other people describe your ms! For me figuring this all out and studying things by myself has been pretty challenging. It is so hard to grab these ameba like things. Neurologists just do some of the technical work, very few of them have helped me to understand and name the phenomena I've been going through. Hope to hear your views on this.

Athina
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Edit: Subject line modified
Last edited by Athina on Mon Jan 02, 2012 10:10 pm, edited 1 time in total.
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Re: What kind of ms do you have

Postby Athina » Sun Jan 01, 2012 5:22 am

Forgot to remark: I have labelled my ms brainstem ms. Don't know how accurate this is. But that's how I would see it anyway.

One ms girl I know has mswith predominantly walking problems and leg spasticity. I'd call this the textbook ms. Or leg ms.

Another woman has mainly cognitive issues such as memory problems. According to her, not much physical symptoms. This would be cognitive ms.

Other suggestions? :smile:

Athina
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Re: What kind of ms do you have

Postby mrbarlow » Sun Jan 01, 2012 8:55 am

Mine is largely restricted to some mild tingling in my hands and feet following a bout of Optic Neuritis I fully recovered from. I suppose what I have might be what is described as benign MS? However doing a lot to try and keep it that way - Rebif, diet, supplements, hookworms.
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Re: What kind of ms do you have

Postby Azaeleaprawn » Sun Jan 01, 2012 3:44 pm

My 1st episode (undiagnosed) was close to 30 years ago, having little or no effects until the last 5 years and my diagnosis in September was SPMS.
I have suffered from vertigo, had some speech problems, tinnitus, optic issues and the odd minor cognitive issue but my main problem is with spasticity in my legs and hips and problems with walking.
So I guess my ms could be called "textbook ms" or as you, Athina, so aptly named it, "leg ms".
In fact if I didn't have the spasticity giving me walking problems, I, for the most part wouldn't even really feel like I have ms.
So let's hear about all the successful remedies for spasticity out there. I'm trying l-threonine (6gms/day) right now - just started it last Thursday.
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Re: What kind of ms do you have

Postby broomdancer » Mon Jan 02, 2012 6:07 am

My husband was dx'ed with ppms in 04. Walking deficulties, heat sensitivtiy, fatique, tiredness, spastic left leg, tingleling left side hand and arm, burning feet were his issues. June 2010 had the ccsvi treatment and he had wonderous improvement for about 6 weeks. Most of the improvements have remained but his walking abilities have deteriorated and is in more pain which he did not have before. Thought that his sciatic nerve was responsible but after having an MRI Dec 23rd we have not received the results yet. I believe it has something to do with his back as he has had problems with his back for years. An earlier MRI stated: best seen on the axial T2 weighted sequence, there is a rounded focus of increased signal intensity noted anteriorly & centrally within the spinal cord at the C3 level. This measures no more than 3mm in maximal transverse dimension. There is no associated spina cord expansion. There is no spinal cord edema. Clinical indication: ? multiple sclerosis (note the question mark)
All in all, I really don't know where to go next? I am leaning toward going to a chiropractor but I am affraid that more damage could result if we choose the wrong practictioner or should I just leave it be. He is not on any ms drugs but vitamins, mag. vit d3 and bacophen. I would really appreciate anyone suggesting a course of action we could try..
With regards,
Diana
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Re: What kind of ms do you have

Postby Athina » Mon Jan 02, 2012 10:22 pm

Hi, perhaps you should post this as an own issue on the list to create a separate thread for your husband. I wish you all the best. When will you receive the MRi results?

Ok, so your husband has a dg of PPMS. The deterioration of walking is in line with that diagnosis. Physiotherapy in general would be a good option, is your husband having any? Baclofen should be good for the spasticity. I definitely would not go to a chiropractor at this point. Pain management should be the priority I think first, have you consulted a good neurologist or other doctor on that? Glad to hear that the ccsvi treatment improved something for you!

broomdancer wrote:My husband was dx'ed with ppms in 04. Walking deficulties, heat sensitivtiy, fatique, tiredness, spastic left leg, tingleling left side hand and arm, burning feet were his issues. June 2010 had the ccsvi treatment and he had wonderous improvement for about 6 weeks. Most of the improvements have remained but his walking abilities have deteriorated and is in more pain which he did not have before. Thought that his sciatic nerve was responsible but after having an MRI Dec 23rd we have not received the results yet. I believe it has something to do with his back as he has had problems with his back for years. An earlier MRI stated: best seen on the axial T2 weighted sequence, there is a rounded focus of increased signal intensity noted anteriorly & centrally within the spinal cord at the C3 level. This measures no more than 3mm in maximal transverse dimension. There is no associated spina cord expansion. There is no spinal cord edema. Clinical indication: ? multiple sclerosis (note the question mark)
All in all, I really don't know where to go next? I am leaning toward going to a chiropractor but I am affraid that more damage could result if we choose the wrong practictioner or should I just leave it be. He is not on any ms drugs but vitamins, mag. vit d3 and bacophen. I would really appreciate anyone suggesting a course of action we could try..
With regards,
Diana
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Re: Leg ms, brainstem ms, cognitive ms, what type is yours?

Postby KateCW » Mon Jan 02, 2012 11:23 pm

Spinal cord MS-I am significantly Affected
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: Leg ms, brainstem ms, cognitive ms, what type is yours?

Postby broomdancer » Tue Jan 03, 2012 3:33 pm

Athina: Thank you for replying to me. No results from his MRI yet, but just getting over the holidays may be a factor...again, I appreciate your advice as I am not sure if I understand his earlier MRI results as to what they mean...His MS Dr said that there was a new drug under approval that will be available to possibly aid in his walking next year (Ampyra). Let's hope! Sorry,I would like to appologize for interrupting this thread, I am not very computer knowledgeable. With regards Diana
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Re: Leg ms, brainstem ms, cognitive ms, what type is yours?

Postby Athina » Tue Jan 03, 2012 10:14 pm

MRI signal hyperintensity at C3 implies that at least when those pictures were taken, the problem was really up in the spinal cord (in the cervical cord). That is not good as it might affect all four limbs. everything below that level. But I'm not a doctor and perhaps that specific lesion has faded away.all the best!

regards Athina
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