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Board: Multiple Sclerosis 05-03-2015, 05:53 PM
Replies: 7
Views: 463
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: 202
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: 463
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: 209
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: 209
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: 209
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: 209
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: 494
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: 494
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: 175
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: 189
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...
Board: Multiple Sclerosis 04-30-2015, 07:29 AM
Replies: 4
Views: 164
Posted By MSJayhawk
Re: Massage therapist noticed?

Gully,

When I get vibrations in my legs, I can literally see them, but there are times when I sense them but do not see them. My hands will vibrate too, but this vibration is rarer and always...
Board: Multiple Sclerosis 04-29-2015, 11:07 PM
Replies: 7
Views: 248
Posted By MSJayhawk
Re: Ms help!!!!!

Donnachloe,

DMDs are the meds like Copaxone, et al Oral/IV/Injection). DMDs are to lower your immune system because MSers have immune systems in hyperdrive.
In the US, the DMDs approved:
...
Board: Multiple Sclerosis 04-29-2015, 08:23 PM
Replies: 7
Views: 248
Posted By MSJayhawk
Re: Ms help!!!!!

Donnachloe,

A symptom drug may help, but the DMDs will not. Sometimes you have to allow time to heal. When my hands are numb and tingling, it depends on my trigger. If it is due to high...
Board: Multiple Sclerosis 04-29-2015, 07:39 PM
Replies: 7
Views: 248
Posted By MSJayhawk
Re: Ms help!!!!!

Donnachloe,


:wave: Welcome.

Welcome to the MS family. Thank you for sharing. If you are going to use meds, it is important to get one which best suits your lifestyle but also one which you...
Board: Multiple Sclerosis 04-29-2015, 05:11 PM
Replies: 2
Views: 158
Posted By MSJayhawk
Re: SPMS and Tecfidera

kb993,

Under the newest guidelines, Progressive patients are no longer recommended to use DMDs. I would ask your doctor why the new guidelines are not used. :angel:
Board: Multiple Sclerosis 04-29-2015, 12:13 PM
Replies: 4
Views: 125
Posted By MSJayhawk
Re: Mild Obstructive Sleep Apnea

Indierock,

Thanks for the update. I am glad it is something treatable. Sleep Apnea effects can vary from person to person and sleep deprivation can more adversarial affect women than men. I...
Board: Multiple Sclerosis 04-29-2015, 10:06 AM
Replies: 2
Views: 147
Posted By MSJayhawk
Re: MS and diet pills/B12 Injections

hitchedlc,


:wave: Welcome.

Your doctor should be consulted. The reason for the weight gain needs to be considered and often a decrease in caloric intake and an increase in exercise can...
Board: Multiple Sclerosis 04-28-2015, 07:55 AM
Replies: 2
Views: 177
Posted By MSJayhawk
Re: HI! and a question ... too old for ON?

cherrybrooks,

:wave: Welcome. Ditto to what Snoopy shared with you. MS keeps giving and giving. ON affects or presents in about 20% of MSers. My first bout with ON did not present until 2002...
Board: Multiple Sclerosis 04-24-2015, 07:37 PM
Replies: 5
Views: 292
Posted By MSJayhawk
Re: Changing meds

Daphnieh,

Many sites will provide you with a line graph showing the types of MS. Doctors would have to graph your MS symptoms over time and graph it. You can do this yourself. There is a...
Board: Multiple Sclerosis 04-24-2015, 03:54 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Glad to hear your good news.

Let the evidence speak for you. You should have a summary of your symptoms to share with the MS Specialist. Other than that, go into this without...
Board: Multiple Sclerosis 04-23-2015, 07:36 PM
Replies: 5
Views: 292
Posted By MSJayhawk
Re: Changing meds

Daphnieh,

The meds are no guarantee that you will not suffer further relapses. There are side effects and screening tests for most meds. If you reach a point wherein you are feeling bad every...
Board: Multiple Sclerosis 04-23-2015, 01:04 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

The VEP is not able to look at a specific region and locate the damage, it is simply a sensitive measure of the electrical pathways of your body. Could it be your vision? ...
Board: Multiple Sclerosis 04-23-2015, 11:47 AM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Just let it be. The worst case? Another VEP.
You cannot go back and change things. Just let it be and you will be fine.

:angel:
Board: Multiple Sclerosis 04-23-2015, 11:02 AM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Let not your heart be troubled. The fact that you failed the VEP means that there is something there (or your nervousness may need to have VEP repeated). The VEP is quite...
Board: Multiple Sclerosis 04-22-2015, 11:18 AM
Replies: 44
Views: 1,616
Posted By MSJayhawk
Re: Please Help

Roxybell,

The "normal" level for women for ferritin is: 18–160 ng/mL or 18–160 mcg/L. Your result is in the low normal, but not deficient. Raising your level to 89 would put you in mid-normal. ...
Board: Multiple Sclerosis 04-21-2015, 06:10 PM
Replies: 44
Views: 1,616
Posted By MSJayhawk
Re: Please Help

Roxybell,

I am glad you do not have a cancer concern. At least this should alleviate some of your worry. Healthy individuals only absorb about 10 to 15 percent of the iron they consume...
Board: Multiple Sclerosis 04-21-2015, 05:52 PM
Replies: 8
Views: 318
Posted By MSJayhawk
Re: Headaches

starissa,

Barring any light issues, it sounds like another ON relapse. When I experience ON, I always have pain followed by ON's vision problems. The pain is different than my light...
Board: Multiple Sclerosis 04-21-2015, 10:55 AM
Replies: 5
Views: 240
Posted By MSJayhawk
Re: To stop Avonex or not...

gillila,

There is no simple answer. The truth is that the medical community cannot tell you if your MS is being suppressed by your body alone or if the meds have played a role. The DMDs are...
Board: Multiple Sclerosis 04-20-2015, 12:17 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Thanks for your update. The VEP is non-invasive, but it does take time to "glue" the electrodes to your scalp and then to test each eye. If you have no minute loss of electrical...
Board: Multiple Sclerosis 04-19-2015, 04:38 PM
Replies: 7
Views: 280
Posted By MSJayhawk
Re: Questions

My doctor varies the dosage accoring to her patients. She does not order any amounts over 4000 iu per day. She said this is because the quality of the vitamins is not consistent. For me, 1000 iu...
Board: Multiple Sclerosis 04-19-2015, 02:17 PM
Replies: 7
Views: 280
Posted By MSJayhawk
Re: Questions

lnvazquez,

Did your doctor establish a supplement dosage? My MS Specialist monitors mine. She started me with a prescription strength and then I supplemented with OTC Vitamin D3 thereafter. ...
Board: Multiple Sclerosis 04-19-2015, 12:44 PM
Replies: 7
Views: 280
Posted By MSJayhawk
Re: Questions

lnvazquez,

:wave: Welcome.

Sorry to hear your dad has MS.

Your last information caught my attention as the most immediate prossible culprit- Vitamin D deficiency. The symptoms you shared...
Board: Multiple Sclerosis 04-19-2015, 09:40 AM
Replies: 44
Views: 1,616
Posted By MSJayhawk
Re: Please Help

Roxybell,

Indeed, you are in a tough spot, but only you have the ability to free yourself from the confines. I can empathize with you. If you can release yourself from the fears and anxieties,...
Board: Multiple Sclerosis 04-18-2015, 12:31 PM
Replies: 19
Views: 1,120
Posted By MSJayhawk
Re: Anxious about unexplained symptoms

Sunshine2015,

As you are moving, please ask your doctor for a referral. Often they have colleagues which can meet your needs. Stay strong! :) Do keep a disc of your MRI images and store it...
Board: Multiple Sclerosis 04-18-2015, 10:37 AM
Replies: 19
Views: 1,120
Posted By MSJayhawk
Re: Anxious about unexplained symptoms

Sunshine2015,

Thanks for sharing your update and good news. I am glad you have a doctor who is looking after you in such a way as you have shared. It sounds like anti-anxiety meds are working...
Board: Multiple Sclerosis 04-18-2015, 09:29 AM
Replies: 3
Views: 255
Posted By MSJayhawk
Re: Recently diagnosed with MS

I see. Welcome to the MS family. If you have been diagnosed, I would ask your diagnosing doctor for a reference for a doctor in Miami or close to where you will be. Most MS doctors can assist you...
Board: Multiple Sclerosis 04-18-2015, 08:24 AM
Replies: 3
Views: 255
Posted By MSJayhawk
Re: Recently diagnosed with MS

:wave: Welcome.

The local MS Association or Society can assist you with a list of MS Specialists in your area. Were you already diagnosed or is this a journey to a diagnosis?

Thanks for...
Board: Multiple Sclerosis 04-18-2015, 08:20 AM
Replies: 1
Views: 301
Posted By MSJayhawk
Re: Please help - crazy neuro symptoms

tevs,

:wave: Welcome.

In your list of doctors, were any of them MS Specialists? You were told that it is not MS. Did they tell you on what basis that decision was reached?

MS symptoms...
Board: Multiple Sclerosis 04-17-2015, 06:02 PM
Replies: 44
Views: 1,616
Posted By MSJayhawk
Re: Please Help

Roxybell,

In looking at your blood tests you might see the MPV as low, but remember that is you compared to the averages. For you your MPV might be normal for you. Some people have vitamin D...
Board: Multiple Sclerosis 04-17-2015, 01:39 PM
Replies: 44
Views: 1,616
Posted By MSJayhawk
Re: Please Help

Roxybell,

Let not your heart be troubled. If you had cancer, you would see an oncologist or be referred to the hematologist by an oncologist. The MS clinic where I go has hematology techies and...
Board: Multiple Sclerosis 04-17-2015, 01:31 PM
Replies: 5
Views: 317
Posted By MSJayhawk
Re: Newly Diagnosed and Deciding on DMT

BBB3,

Because the long term side effects are a risk, many forego the meds. None of the current meds can guarantee you will not have a relapse. It really comes down to a personal decision. When...
Board: Multiple Sclerosis 04-16-2015, 10:23 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Good update. I hope indeed that you gain control of your anxiety because anxiety alone can literally debilitate. I hope you can trust what the neuro told you because it really...
Board: Multiple Sclerosis 04-16-2015, 08:47 AM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Your report was written by a radiologist They write a BROAD report to cover a multitude of possibilities. Allow your doctor to look at the image. My MS Specialist always reads the...
Board: Multiple Sclerosis 04-16-2015, 06:50 AM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

Humans tend to find that for which they are searching whether good or bad. Dr. Internet is a major contributor to this end. The internet can provide a distraction, however, such...
Board: Multiple Sclerosis 04-15-2015, 12:14 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

The troubling appearance of this would be that the doctor is depending upon the radiologist. This may be a mistake on my part, but what you shared sounds like the radiologist needs to state MS for...
Board: Multiple Sclerosis 04-15-2015, 10:52 AM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,


No worries. If you were to have MS lesions, the likelihood of locating them is greatest on the brain and cervical spine. The thoracic spine and lumbar spine are les likely to...
Board: Multiple Sclerosis 04-15-2015, 07:15 AM
Replies: 8
Views: 318
Posted By MSJayhawk
Re: Headaches

starissa,

Kudos. It sounds like you are aware of sources of headaches. My headaches caused by light sensitivity start in the area behind my right eye. I have also had pain in both eyes when ON...
Board: Multiple Sclerosis 04-14-2015, 04:08 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

A review at the MS Clinic will help. Is Scarlet Fever in your medical history? That is, are your doctors aware of this fact? Your bout with Scarlet Fever could well indeed have...
Board: Multiple Sclerosis 04-14-2015, 02:14 PM
Replies: 36
Views: 1,135
Posted By MSJayhawk
Re: Symptoms

Seamonkey1976,

No worries. 9 spots could have been with you since childhood. I gave up counting my spots long ago. I have many more than 9 spots.

Adding your thoracic spine to an MRI may...
Showing results 1 to 50 of 500

 








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