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Board: Multiple Sclerosis 05-25-2015, 12:07 PM
Replies: 7
Views: 213
Posted By MSJayhawk
Re: Out of Denial, Back to a MS Drug.

cherry8456,

For me it is light sensitivity which is affected by certain frequencies. Since 2002 the pain has disappeared and only presents if I have been without my sunglasses. At night I...
Board: Multiple Sclerosis 05-24-2015, 07:27 PM
Replies: 7
Views: 213
Posted By MSJayhawk
Re: Out of Denial, Back to a MS Drug.

cherry8456,

No worries. It certainly sounds like ON as you shared. I have had the grey (color washout) as well as complete vision loss. I have recovered each time. My forst bout of ON was in...
Board: Multiple Sclerosis 05-24-2015, 06:08 PM
Replies: 7
Views: 213
Posted By MSJayhawk
Re: Out of Denial, Back to a MS Drug.

cherry8456

Extavia and Betaseron are brand names for interferon beta 1b. If you had problems, you should not go back to these meds.

3 years on Tysabri without testing for the JC virus was...
Board: Multiple Sclerosis 05-24-2015, 12:49 PM
Replies: 46
Views: 1,815
Posted By MSJayhawk
Re: Please Help

Roxybell,

Please do not worry. The anxiety is causing and can cause worsening symptoms. Good luck on Thursday and look forward to results which will provide you answers. Guessing what you...
Board: Multiple Sclerosis 05-23-2015, 04:30 PM
Replies: 6
Views: 225
Posted By MSJayhawk
Re: Optic Neuritis

firemom31,

Vitreous detachment is quite common regarding floaters. Some people think floaters are MS related, but this is not the case. I am glad you are not dealing with ON. The movement...
Board: Multiple Sclerosis 05-22-2015, 05:03 PM
Replies: 7
Views: 173
Posted By MSJayhawk
Re: Will pred work for PP/SPMS?

mindi111,

MS is as clear as mud :D

ON only affects about 20% of MSers. If you have never had it, there is no way to know if you will ever have it. Indeed steroids are often used with ON.
...
Board: Multiple Sclerosis 05-22-2015, 07:49 AM
Replies: 9
Views: 295
Posted By MSJayhawk
Re: just looking for information.

drummer84,

For many, the first year is the big hurdle. You may find a roller coaster ride, but you can adjust to it. With the steroids you may experience some swings. The main thing I found was...
Board: Multiple Sclerosis 05-21-2015, 02:24 PM
Replies: 9
Views: 295
Posted By MSJayhawk
Re: just looking for information.

drummer84,

:wave: Welcome to the MS Family.

As to steroid reactions, I would encourage you to read a list of possible side effects and what things of which you should be aware. That is, when...
Board: Multiple Sclerosis 05-21-2015, 02:15 PM
Replies: 7
Views: 173
Posted By MSJayhawk
Re: Will pred work for PP/SPMS?

mindi111,

A relapse can be subjective, but it is usually considered a relapse if more than 30 days passed since the presentation of a symptom and the next onset. There are symptoms which present...
Board: Multiple Sclerosis 05-21-2015, 06:41 AM
Replies: 10
Views: 237
Posted By MSJayhawk
Re: Had some blood tests done

iCandace,

I am glad to see that you got some news on your blood tests. With a clear result, blood borne MS mimicries are eliminated as a possibility and this would push you closer to an answer....
Board: Multiple Sclerosis 05-21-2015, 06:25 AM
Replies: 8
Views: 306
Posted By MSJayhawk
Re: And now I know!

CountryGal22,

I understand. Mine is an esophageal issue too, though not to the extent to which you are dealing. For me the ice cold drink lessens the choking potential. When I started choking...
Board: Multiple Sclerosis 05-20-2015, 07:28 PM
Replies: 4
Views: 199
Posted By MSJayhawk
Re: Lemtrada- 1st course complete!

mindi111,

When I "feel" a "cold" coming on, it is the one time I take vitamin C. I take 3000-6000 mg per day until 3 days after the "cold" feeling goes away. I have not had a full blown cold...
Board: Multiple Sclerosis 05-20-2015, 07:23 PM
Replies: 7
Views: 173
Posted By MSJayhawk
Re: Will pred work for PP/SPMS?

Steroids are not DMDs and MIGHT work. The problem is when a person with PPMS or SPMS should take it. The problem is that long term use of steroids diminishes in effectiveness over time. My doctor...
Board: Multiple Sclerosis 05-19-2015, 05:17 PM
Replies: 8
Views: 306
Posted By MSJayhawk
Re: And now I know!

CountryGal22,

I have swallowing issues with certain foods. I use ice water and ice cold drinks. It helps me greatly and has reduced my swallowing difficulties. Some things are just too difficult...
Board: Multiple Sclerosis 05-19-2015, 11:07 AM
Replies: 8
Views: 306
Posted By MSJayhawk
Re: And now I know!

Tomatoes can be an inflammatory to some people. I might suggest "Black Galaxy" a black (deep purple) tomato developed in Israel. The added the DNA of the blueberry to a dark tomato. The flavor is...
Board: Multiple Sclerosis 05-19-2015, 07:08 AM
Replies: 8
Views: 306
Posted By MSJayhawk
Re: And now I know!

gillila,

No worries. Just sharing info that may or may not help others.
Tightness and cramps are different. Cramps are much more painful, I think. Tightness is something I feel each day and...
Board: Multiple Sclerosis 05-18-2015, 08:49 AM
Replies: 10
Views: 957
Posted By MSJayhawk
Re: new to Ms

msms,

Heat can be a stressor for most MSers; therefore, you are in good company. Keeping a journal can help you determine if you have any food triggers. I avoid beef, dark fowl, and processed...
Board: Multiple Sclerosis 05-17-2015, 09:09 PM
Replies: 11
Views: 478
Posted By MSJayhawk
Re: Need Advice

RMH3838,

Your optometrist may have seen something, but I assume the ophthalmologist is in a better position to review any potential visual concerns.

Be that as it may, in regards to your...
Board: Multiple Sclerosis 05-17-2015, 10:02 AM
Replies: 9
Views: 295
Posted By MSJayhawk
Re: just looking for information.

drummer84,

:wave: Welcome.

Based upon the fact that you had an earlier lesion the doctor felt was related, you are on the right path. Some MSers may present with a single lesion and nothing...
Board: Multiple Sclerosis 05-16-2015, 12:51 PM
Replies: 4
Views: 203
Posted By MSJayhawk
Re: MS help

highandlow89,

Thanks for your clarification.

If you have MS, you could have a lesion for each symptom or not. Location of a lesion can cause multiple symptoms as well as single symptoms. ...
Board: Multiple Sclerosis 05-16-2015, 11:07 AM
Replies: 10
Views: 237
Posted By MSJayhawk
Re: Had some blood tests done

iCadance,

Further is strenuous exercise. Are you doing any? Low impact and with moderation should be considered. :) :angel:
Board: Multiple Sclerosis 05-16-2015, 11:05 AM
Replies: 10
Views: 237
Posted By MSJayhawk
Re: Had some blood tests done

iCadance,

As you are on meds, this could answer the question as to the elevated levels. Your doctor would need to assess the possibility of a med cause for the elevation. :) Also, you might...
Board: Multiple Sclerosis 05-16-2015, 11:01 AM
Replies: 4
Views: 203
Posted By MSJayhawk
Re: MS help

highandlow89,

There are over 400 known mimicries of MS. From your list of symptoms. you have to consider the length of presentation of each symptom. That is, of the list, are all these symptoms...
Board: Multiple Sclerosis 05-16-2015, 10:51 AM
Replies: 10
Views: 237
Posted By MSJayhawk
Re: Had some blood tests done

iCadance,

I see. Thanks. The Creatine Kinase (CK) is used with heart attacks as well as other concerns such as strokes or other injuries. Levels of CK may rise if you have a thyroid problem or...
Board: Multiple Sclerosis 05-16-2015, 09:20 AM
Replies: 10
Views: 237
Posted By MSJayhawk
Re: Had some blood tests done

Thanks for your update.

What was elevated? :angel:
Board: Multiple Sclerosis 05-15-2015, 08:50 PM
Replies: 10
Views: 957
Posted By MSJayhawk
Re: new to Ms

msms,

Triggers can vary. For me, I have a low and high temperature trigger. These triggers did not develop until 2002 when my MS worsened. Maintaining a journal can help you determine what...
Board: Multiple Sclerosis 05-13-2015, 04:34 PM
Replies: 4
Views: 199
Posted By MSJayhawk
Re: Lemtrada- 1st course complete!

mindi111,

Thanks for sharing your update. I am sure that it will help others who are walking the same path as you. :angel:
Board: Multiple Sclerosis 05-12-2015, 10:53 AM
Replies: 7
Views: 396
Posted By MSJayhawk
Re: Severe pain... help please

Sarars86,

It may be noted in your background history and she might be reviewing it for the radiologist. I do not think you should worry about the question. I think it shows compassion and...
Board: Multiple Sclerosis 05-11-2015, 08:06 PM
Replies: 10
Views: 957
Posted By MSJayhawk
Re: new to Ms

msms,

:wave: Welcome.

Welcome to the MS family. Do not worry about any particular area where you might have a lesion. Your CNS "wiring" is not an exact match to others and there is simply...
Board: Multiple Sclerosis 05-11-2015, 03:18 PM
Replies: 6
Views: 225
Posted By MSJayhawk
Re: Optic Neuritis

firemom31,

Thanks for your news! I am glad you saw an MS Specialist.

IF steroids are to be used to deal with ON, you cannot delay the visit with the ophthalmologist. Also the ophthalmologist...
Board: Multiple Sclerosis 05-11-2015, 01:37 PM
Replies: 8
Views: 306
Posted By MSJayhawk
And now I know!

My MS Specialist told me to have some V-8 Vegetable juice on standby in case I have cramps which present. Today I was reading that magnesium was determined to be the key in a recent study of muscle...
Board: Multiple Sclerosis 05-11-2015, 10:00 AM
Replies: 6
Views: 281
Posted By MSJayhawk
Re: Anyone else taking Nuvigil for fatigue

Gma5and2,

No worries. When a new symptom presents, it is best to have it checked by your regular doctor just as you did. A long term neuro with experience with MS is important, I think. Even...
Board: Multiple Sclerosis 05-10-2015, 09:10 AM
Replies: 3
Views: 195
Posted By MSJayhawk
Re: Plegridy update - 3rd shot complete

KingBaxter,

Thanks for the update and taking time to share your experiences. You are a "pioneer" to many, I think. Your experiences can help others. :angel:
Board: Multiple Sclerosis 05-10-2015, 06:43 AM
Replies: 6
Views: 281
Posted By MSJayhawk
Re: Anyone else taking Nuvigil for fatigue

Gma5and2,

The important question is whether you have developed or progressed into SPMS or not. New guidelines were established for MS Specialist for treating SPMS and PPMS patients. I do not...
Board: Multiple Sclerosis 05-09-2015, 11:17 AM
Replies: 8
Views: 599
Posted By MSJayhawk
Re: No diagnosis - waiting for another MRI

sarabeach123,,

Thanks for sharing your update. You have so many hurdles to cross up there. If there is something rally troubling about your MRI, I should hope that they would call you in...
Board: Multiple Sclerosis 05-07-2015, 01:21 PM
Replies: 5
Views: 296
Posted By MSJayhawk
Re: SPMS and Tecfidera

M.Paul,

SPMS = Secondary Progressive MS. (Most RRMS MSers will eventually go from RRMS to SPMS)
PPMS- Primary Progressive MS (10% of MSers have PPMS)
RRMS- Relapse Remitting MS. (85% of MSers...
Board: Multiple Sclerosis 05-07-2015, 07:53 AM
Replies: 7
Views: 396
Posted By MSJayhawk
Re: Severe pain... help please

Sarars86,

I understand your gait. You might try a change in shoes. I have had foot drop since I was 14 yo (I am 51 now). For me, while I have learned to drag my foot along, a change of shoes as...
Board: Multiple Sclerosis 05-06-2015, 11:01 PM
Replies: 7
Views: 396
Posted By MSJayhawk
Re: Severe pain... help please

Sarars86,


:wave: Welcome,

Long term use of pain meds has long term health consequences. MS pain is often not affected by pain meds in the long term.

I will share that what you described...
Board: Multiple Sclerosis 05-06-2015, 04:48 PM
Replies: 4
Views: 255
Posted By MSJayhawk
Re: Understanding

verysad123,

:wave: Welcome.

A vitamin D deficiency is very likely the culprit. A supplement program is usually something that needs to be maintained unless the cause of the deficiency has...
Board: Multiple Sclerosis 05-03-2015, 05:53 PM
Replies: 7
Views: 688
Posted By MSJayhawk
Re: Would like to share list of strange symptoms

guille1966

I have not had the symptom you described just now. This is, however, real. Unfortunately this is still not fully understood. What you are experiencing is called Allochiria (a Greek...
Board: Multiple Sclerosis 05-02-2015, 11:07 PM
Replies: 2
Views: 331
Posted By MSJayhawk
Re: Odd symptoms

caznut,

:wave: Welcome.

Over the past few years I have had to learn to turn slowly as to not lose my balance. Mine is MS related. My mother had the same thing, but for her it was...
Board: Multiple Sclerosis 05-02-2015, 10:22 AM
Replies: 7
Views: 688
Posted By MSJayhawk
Re: Would like to share list of strange symptoms

guille1966,

:wave: Welcome.

While some of your symptoms do indeed resemble Raynaud's Syndrome, not all do. Raynaud's Syndrome is an MS mimicry. MS has many mimicries (400+ known). For me,...
Board: Multiple Sclerosis 05-01-2015, 07:41 PM
Replies: 8
Views: 291
Posted By MSJayhawk
Re: Clinical Studies of Guanabenz for Treatment of Multiple Sclerosis

Brian,

No worries.

Within the pharmaceutical world there are many meds which have been discovered to act upon different cases. No one has yet tested this high BP med on an MSer without high...
Board: Multiple Sclerosis 05-01-2015, 10:25 AM
Replies: 8
Views: 291
Posted By MSJayhawk
Re: Clinical Studies of Guanabenz for Treatment of Multiple Sclerosis

I should have been a bit clearer. As Guanabenz is already an FDA approved drug, the time frame for approval for MSers would be faster, but if the clinical studies are just now getting started, it...
Board: Multiple Sclerosis 05-01-2015, 10:10 AM
Replies: 8
Views: 291
Posted By MSJayhawk
Re: Clinical Studies of Guanabenz for Treatment of Multiple Sclerosis

Clinical trials could mean 2 - 5 years to market depending on the follow-up and FDA approval hurdles. I do not know what the process is like in Canada, but here in the US, barring a miracle, from...
Board: Multiple Sclerosis 04-30-2015, 07:25 PM
Replies: 8
Views: 291
Posted By MSJayhawk
Re: Clinical Studies of Guanabenz for Treatment of Multiple Sclerosis

RBC8486,

:wave: Welcome.

Here in the US as of April 2015 National Institutes of Health Clinical Center was still advertising the recruiting of trial participants.

:angel:
Board: Multiple Sclerosis 04-30-2015, 02:37 PM
Replies: 12
Views: 572
Posted By MSJayhawk
Re: New here -- dropped big toe/tingling/more

grozer,

I do not know which MS clinic would serve you best, but off-hand, either one would be fine because your main goal is to be seen by someone who deals with MSers and MS mimicries. There...
Board: Multiple Sclerosis 04-30-2015, 12:51 PM
Replies: 12
Views: 572
Posted By MSJayhawk
Re: New here -- dropped big toe/tingling/more Follow up after neuro

grozer,

Thanks for your update. I would disagree that sometimes doctors do not know why because I do not think it apples to your situation. While I still do not think you have MS, I would still...
Board: Multiple Sclerosis 04-30-2015, 10:56 AM
Replies: 2
Views: 229
Posted By MSJayhawk
Re: Ms Issue

Musikat,

:wave: Welcome.

I was diagnosed with MS in 1982. At that time MS was considered a career ending sentence. I lost many "fair weather friends", BUT I gained new friends and discovered...
Board: Multiple Sclerosis 04-30-2015, 07:49 AM
Replies: 2
Views: 273
Posted By MSJayhawk
Re: please Help 26 yro female ms symptoms i need help

jmaynar,

:wave: Welcome.

There are over 400 known MS mimicries which can cause "Dr. Internet" to list MS. Let not your heart be troubled.

I agree that it is more than likely Vitamin D...
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