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Board: Multiple Sclerosis 11-04-2018, 08:36 PM
Replies: 11
Views: 368
Posted By MSJayhawk
Re: Ms Hug help

The jury is still out for Ocrevus. It has FDA Approval BUT it is still at Phase III. There have been at least 17 deaths attributed to Ocrevus and the long term residual effects are still unknown....
Board: Multiple Sclerosis 11-04-2018, 05:21 PM
Replies: 11
Views: 368
Posted By MSJayhawk
Re: Ms Hug help

I have had PPMS for 41+ years. I have had MS hugs since the beginning of my journey. At first they were scary, but afterwards, they ceased to be scary and just became an annoyance. PPMS patients...
Board: Multiple Sclerosis 10-19-2018, 11:33 AM
Replies: 2
Views: 322
Posted By MSJayhawk
Re: Overly sensitive skin

gillila,

You are not crazy. I have the same problems which can manifest variously. Sometimes I cannot even stand the touch of paper or other times plastic. At other times it can be a person's...
Board: Multiple Sclerosis 09-23-2018, 06:09 PM
Replies: 13
Views: 2,282
Posted By MSJayhawk
Re: MS and confused

Snukki,

Your legs will get stronger. As soon as your wires are reconnected and electrical stimuli are moving, your muscles will get stronger. For PT, it is important that your therapist has...
Board: Multiple Sclerosis 09-21-2018, 10:35 PM
Replies: 13
Views: 2,282
Posted By MSJayhawk
Re: MS and confused

Snukki,

When your legs are not working, maintaining tone and muscle memory are the main things you can do. When your neural pathways are firing sufficiently, you can walk. However, your...
Board: Multiple Sclerosis 09-20-2018, 03:23 PM
Replies: 13
Views: 2,282
Posted By MSJayhawk
Re: MS and confused

Snukki,
I spent 6 months bedridden due to MS Seizures and several years confined to a power chair. Later I lost the use of my left leg. Each timely MS Specialist told me to keep stretching and...
Board: Multiple Sclerosis 09-11-2018, 07:30 PM
Replies: 3
Views: 418
Posted By MSJayhawk
Re: looking for R/ R MS patients who are not on MS drugs!

Sorry, I just noted your RRMS :) :angel:
Board: Multiple Sclerosis 09-11-2018, 07:12 PM
Replies: 3
Views: 418
Posted By MSJayhawk
Re: looking for R/ R MS patients who are not on MS drugs!

Never been on the DMDs nor steroids 41+ years :angel:

My experience has been managing triggers, stretching, and maintaining physical and mental activities.
Board: Multiple Sclerosis 07-20-2018, 10:50 AM
Replies: 2
Views: 1,297
Posted By MSJayhawk
Re: Heat and MS

Hi. Symptoms can be affected by the hot weather. Once the symptoms begin, even though an introduction to air conditioning happens, the net effect might not be seen for awhile. Yesterday I had...
Board: Multiple Sclerosis 07-09-2018, 07:54 PM
Replies: 13
Views: 2,282
Posted By MSJayhawk
Re: MS and confused

Snukki, :) Yes PT can be painful, BUT not necessarily. Is your Therapist one with MS experience? Thorough stretching can and does help. I know it helped me. When the weather and temperatures...
Board: General Health 05-18-2018, 05:02 PM
Replies: 2
Views: 575
Posted By MSJayhawk
Re: Vitamin D deficiency

My doctor has me take vitamin D to maintain a mid-normal range. One of the important facts is that a D deficiency can mimic MS. This can cause confusion.

D deficiency symptoms start to...
Board: Multiple Sclerosis 05-18-2018, 12:53 PM
Replies: 3
Views: 1,272
Posted By MSJayhawk
Re: MRI Question

:wave: Thanks for your question. Neoplasm is any new or abnormal growth. For you it means that more probing is necessary as the report points away from lesions. I would, however, suggest that you...
Board: Multiple Sclerosis 03-21-2018, 05:20 PM
Replies: 3
Views: 721
Posted By MSJayhawk
Re: Touch sensations gone whacky. Anyone else?

updown,

Welcome :wave:

I get touch sensations that can "weird me out". Sometimes it is the touch of plastic or paper. Cotton has been my best friend :) I also had good luck with silk. ...
Board: Multiple Sclerosis 03-07-2018, 06:04 PM
Replies: 3
Views: 2,320
Posted By MSJayhawk
Re: Need someone to tell me this will be okay...because I'm scared.

:wave: Prayers for you. Any kind of trauma can trigger symptoms as it is a stress on out bodies. Broke my ankle last year and went through symptoms but I have PPMS and have daily symptoms. Still I...
Board: Multiple Sclerosis 02-22-2018, 11:18 PM
Replies: 14
Views: 1,620
Posted By MSJayhawk
Re: MS out of control NO more rest

BTW, you might try watching TV because it helps zero out your brain waves. This allows your brain to rest even if sleep is elusive :angel:
Board: Multiple Sclerosis 02-22-2018, 11:16 PM
Replies: 14
Views: 1,620
Posted By MSJayhawk
Re: MS out of control NO more rest

:wave: Welcome. I have been without rest for 40+ years now. You will cycle through symptoms and the severity will likely cycle. I have found that I have had excellent results in avoiding many of...
Board: Multiple Sclerosis 02-16-2018, 01:20 PM
Replies: 2
Views: 639
Posted By MSJayhawk
Re: Tysabri and Prednisone

I would have to say that you really have to rely on the medical advice of your prescribing doctor. As prednisone has a diminishing benefit, perhaps that should be a lower priority. That said, if...
Board: Multiple Sclerosis 01-28-2018, 01:17 PM
Replies: 5
Views: 1,216
Posted By MSJayhawk
Re: Clemastine to repair dremyelinating ?

Typically you can speak to the study group. I know that the notices at the university hospital where I went highlighted upcoming studies and the requirements for being accepted. The notices showed...
Board: Multiple Sclerosis 01-27-2018, 08:38 PM
Replies: 5
Views: 1,216
Posted By MSJayhawk
Re: Clemastine to repair dremyelinating ?

Rem4,

A Phase 2 clinical trial showed that the antihistamine clemastine fumarate helped people with a chronically damaged optic nerve. The therapy led to faster firing of patients' vision...
Board: Multiple Sclerosis 01-25-2018, 11:14 PM
Replies: 5
Views: 1,506
Posted By MSJayhawk
Re: Diagnosed M.S., Severe "Man" problems ...

James,

The identification of the weight gain reason can help a great deal too. Exercise is important to our overall health. Low impact exercise is best. As to length of exercise, this is...
Board: Multiple Sclerosis 01-24-2018, 06:33 PM
Replies: 5
Views: 1,506
Posted By MSJayhawk
Re: Diagnosed M.S., Severe "Man" problems ...

:wave: Welcome James.

You have to look to the cause of the testosterone depletion. It may be unrelated to your MS. Have you spoken with your MS Specialist?? If it is not related to MS, your MS...
Board: Multiple Sclerosis 01-08-2018, 06:46 PM
Replies: 1
Views: 694
Posted By MSJayhawk
Re: Update.

Nae948,

No worries. Treating the depression is important and can help your struggle with MS. As to taking medication- No one can force you to take a certain medication nor any medication. You...
Board: Multiple Sclerosis 01-07-2018, 09:26 PM
Replies: 1
Views: 718
Posted By MSJayhawk
Re: Possible Tumefactive MS -- I would appreciate any insight!

:wave: Welcome. As you are in good hands at the Mayo, trust your specialists :) In tumefactive multiple sclerosis lesions are larger than two centimeters. This condition is also more aggressive...
Board: Multiple Sclerosis 12-27-2017, 01:02 PM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

For me, stretches before bedtime have helped alleviate muscle cramps. Traditionally Tai Chi has been a morning exercise, but anytime should work. It really is a matter of what works best...
Board: Multiple Sclerosis 12-26-2017, 11:31 PM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

That is good to hear. I use an exercycle which has handles for my arms to assist my legs in pedaling. Make sure you listen to your body while exercising. While my goal is 20 - 30...
Board: Multiple Sclerosis 12-26-2017, 08:49 PM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

Rather than a treadmill with a forearm/elbow crutch, try an exercise bike or a walk about the track. Also consider pool therapy. Some gyms even have underwater treadmills. :) :angel:
Board: Multiple Sclerosis 12-26-2017, 05:23 PM
Replies: 2
Views: 1,359
Posted By MSJayhawk
Re: Recently new diagnosis of MS

:wave: Welcome. In quick reply, yes no or maybe is the answer as each MSer reacts and experiences symptoms differently. For me I dragged my left leg for nearly 3 years, but now I have 80%...
Board: Multiple Sclerosis 12-26-2017, 09:13 AM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

Interestingly, you will probably be in a position where steroids will not be useful or necessary by the time they get a bed for you :) :angel:
Board: Multiple Sclerosis 12-19-2017, 11:05 PM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

National Health System is a meandering behemoth ! Hope you hear something soon :) :angel:
Board: Multiple Sclerosis 12-16-2017, 08:46 PM
Replies: 15
Views: 1,461
Posted By MSJayhawk
Re: Early Chrimbo "pressie" 😕

Janet,

I hope you make it home for Christmas :) Best of luck on the LP and the IV Steroids. Take some mints with you to help with the metallic taste in your mouth. As to the LP, stay down...
Board: Multiple Sclerosis 12-08-2017, 04:32 PM
Replies: 5
Views: 1,423
Posted By MSJayhawk
Re: Diagnosed today

Janet,

Elhers Danlos Classical Type combined with MS is a double whammy indeed. While taking your IV Steroids, have some mints with you as the steroids can give you a metallic taste in your...
Board: Multiple Sclerosis 12-07-2017, 10:12 PM
Replies: 5
Views: 1,423
Posted By MSJayhawk
Re: Diagnosed today

Janetb1968,

:wave: Welcome to the MS family. I know you would rather not be a member, but you are most welcome among fellow MSers.

The Lumbar Puncture here in the US is generally an...
Board: Multiple Sclerosis 11-12-2017, 10:09 PM
Replies: 5
Views: 1,293
Posted By MSJayhawk
Re: My mother is having terrible symptoms

Hitmaker,

I would encourage you to introduce your mom to this site. Perhaps she would benefit from lurking or even asking things :angel:
Board: Multiple Sclerosis 11-12-2017, 10:07 PM
Replies: 5
Views: 1,293
Posted By MSJayhawk
Re: My mother is having terrible symptoms

Hitmaker,

Meds can add to our woes. There are lifestyle aides available to assist with MSers.. Speaking with her doctor, if you are able, can help her. Sometime a change in meds is necessary....
Board: Multiple Sclerosis 11-12-2017, 08:01 AM
Replies: 5
Views: 1,293
Posted By MSJayhawk
Re: My mother is having terrible symptoms

Thank you for sharing. One of the difficulties may be the fall your mom experienced as concussions can leave long term effects. I am not a doctor. but I think some of her problems stem from the fall....
Board: Multiple Sclerosis 11-06-2017, 11:17 PM
Replies: 8
Views: 1,881
Posted By MSJayhawk
Re: I don't know what has happened to me and need help (LONG)

Silver fillings have often be called into question, BUT this is a false theory. This has been repeatedly presented over the years. Many dentists have made money off of MSers needlessly. ...
Board: Multiple Sclerosis 10-30-2017, 12:55 PM
Replies: 5
Views: 1,385
Posted By MSJayhawk
Re: MS and cold

Rem4,

Nice update :) Glad you are headed in the right direction :angel:
Board: Multiple Sclerosis 10-29-2017, 11:17 AM
Replies: 5
Views: 1,385
Posted By MSJayhawk
Re: MS and cold

Rem,

When my colds/ etc overwhelm my immune system which is already in hyperdrive, I have found that taking 3000 mg of vitamin C 3-4 times a day helps me. I continue to take it 2-3 days after...
Board: Multiple Sclerosis 10-27-2017, 09:26 AM
Replies: 8
Views: 1,881
Posted By MSJayhawk
Re: I don't know what has happened to me and need help (LONG)

Rosemerryn ,

:wave: Welcome. Going to see the GP is a good thing, but because you were diagnosed with MS, your GP may have his blinders on when working with you. Those things you described do...
Board: Multiple Sclerosis 10-08-2017, 09:03 AM
Replies: 2
Views: 1,270
Posted By MSJayhawk
Re: PML risk, Tysabri and Lemtrada

Daphnie,

Being positive for JC throws a wrench into the situation. Even if you were not JC positive, you would still need to be vigilantly monitored. The fact that you are JC positive requires a...
Board: Multiple Sclerosis 09-20-2017, 11:05 PM
Replies: 3
Views: 825
Posted By MSJayhawk
Re: tissue loss/scarring with Copaxone

tiku67,

Some MSers might experience a reaction to the injection site, but it is impossible to know how long or whether or not you might experience a reaction. Site reactions are possible effects...
Board: Multiple Sclerosis 09-04-2017, 09:07 AM
Replies: 4
Views: 1,314
Posted By MSJayhawk
Re: MS related pain?

mickchick1962,

I would side with the arthritis angle, BUT I would also not dismiss the involvement or link with MS. The feeling of uneasiness/panic can be the MS link. Anxiety or stress can...
Board: Multiple Sclerosis 08-24-2017, 08:06 PM
Replies: 4
Views: 1,642
Posted By MSJayhawk
Re: Question for a friend who was diagnosed, then un-diagnosed.

firemom31,

If your friend met the Revised McDonald Criteria, then the diagnosis should stand. Another MS Specialist should be sought. That said, absent the lesions, the D deficiency could...
Board: Multiple Sclerosis 08-14-2017, 08:11 PM
Replies: 2
Views: 850
Posted By MSJayhawk
Re: Urinary Retention

Elle J,

Bladder issues can be stress and anxiety triggered too. Under increased stress, personally I have an increased bladder as well as bowel frequency. Also to be considered are dietary...
Board: Multiple Sclerosis 08-11-2017, 11:40 AM
Replies: 8
Views: 1,427
Posted By MSJayhawk
Re: Stuck between a rock and a hard place!

Rosebud45,

One day at a time is all we have. If she is under your roof, then there has to be an understanding. Food is often used as a tool dating to childhood control issues.

That said, ...
Board: Multiple Sclerosis 08-06-2017, 09:51 PM
Replies: 8
Views: 1,427
Posted By MSJayhawk
Re: Stuck between a rock and a hard place!

Rosebud45,

As she is a grown adult, it is difficult to effect a change without her cooperation. Given your national healthcare differs from that of the US, I am unsure if your daughter can get...
Board: Multiple Sclerosis 08-01-2017, 09:44 PM
Replies: 3
Views: 629
Posted By MSJayhawk
Re: Update

Nae948 ,

Your doctor needs to be addressing your Vitamin D deficiency. While the deficiency will not cause lesions, it will cause MS like symptoms which could cause you conflicts between MS and...
Board: Multiple Sclerosis 07-15-2017, 07:59 AM
Replies: 8
Views: 1,427
Posted By MSJayhawk
Re: Stuck between a rock and a hard place!

Rosebud45 ,

:wave: Welcome.

Isolation only feeds a cycle of depression which feeds onto itself. Staying in bed will only continue to weaken her and intensify the effects.
...
Board: Multiple Sclerosis 07-11-2017, 05:17 PM
Replies: 3
Views: 631
Posted By MSJayhawk
Re: Looking for a new Neuro in NJ

Reeny706

There is a search link in the stickies at the top of the forum page. It can locate an MS Specialist based on your zip code. :) :angel:
Board: Multiple Sclerosis 07-10-2017, 10:30 PM
Replies: 3
Views: 767
Posted By MSJayhawk
Re: Ultra-sensitive arms

CI1967,

My MS has been PPMS since I was diagnosed. My symptoms can start out slowly or strike quickly. There is no rhyme or reason. It might also be that you have had a symptom but your...
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