Hi Friends-hope you’re all doing well during this Covid 19 crisis. I realized I haven’t been on here in two months.
I was wondering if any of you had a problem with one of your sides going out constantly? I’ve had this issue now for over 6 months and seems to be getting worse. I told my Neuro about it last week during my teletherapy appt and was referred to a Pain Clinic in which I have a teletherapy consultation tomorrow am. The right side of my neck, right shoulder, upper right arm on side goes out often everyday. I have to lay down on bed to unlock it or lay on floor and use foam roller to stretch out tight kinks. It doesn’t always help ease tightness completely, but helps sometimes. I stretch everyday too and take baclofen for spasticity. I’m just sick of it!! Also, I have locked up muscles in mid back area going down to right hip down to leg, calf then foot. Been having numbness now in leg and calf since yesterday. Just contacted my Neuro this am for advice on numbness. I’m waiting for a reply. I hope this is not a relapse or progression again. Maybe it’s just something that has been out.
I’d would love to hear from you!
Thanks, Nikki
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nicoly3467
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Sorry Nikki I don’t know how to help you. You have done the right thing by contacting your neurologist please let us know how you get on. I hope this is only a temporary situation for you, big hug, Blessings Jimeka 🤗
I agree and did, thank you! I was referred to a Pain Clinic and I need to do some imaging tests (Full spine MRI, X-ray, etc) the doc will order then they’ll come up with a specific therapy plan for me. I’m excited and hope it helps. Thanks!
oh my sounds scary ...hope it is all resolved for you quickly...doesn't sound very fun but is sounding scary....prayers and love to get better and fixed fast ...
I have a baclofen pump. With MS it is difficult to tell what works.
Am I waiting to long for results or should it work sooner? I found a neuro physical therapist .She did good stretching and Idid get some positives from that.Unfortunatel she got promoted and I can not find someone like her.I am now on Ocrevus I fusion every 6 monthskeep trying and good luck.
Dear Nikki, Your muscle spasms unfortunately sound like a progression of your MS. Definitely check with your neurologist but there are a few things that you can do to help mitigate the problem. 1. Ask your neurologist if you should increase your Baclofen.I have gotten to a point where I now have a Baclofen pump with a cathater feeding directly to my spinal cord it helps a lot. 2. Find a physical therapist that specializes in neurological therapy if fortunate find a good one, which can be harder than it sounds counting on where you live, and have the therapist come up with a stretching routine that you or with the help of a personal trainer can do a few times a week .
The problem may go away or the problem may be a reality that you will just have to live with, I don’t think a Pain Clinic will really help that much if you have MS your problem is with the disconnect of your nerves, steroids, cortisone or botox shots can give temporary relief but over the years a stretching routine and increasing Baclofen has helped muscle spasms in the long term for me. Hope this helps, good luck. Peter
Hi Peter-thanks for info! Much appreciated. I’m glad the Baclofen pump has helped you. That’s something for me to consider, if this keeps happening.
The AZ pain clinic has a few other methods too besides injections so I’m excited. I had a teletherapy consultation last week. I’ll be meeting a Chiroprator soon online with this Pain Clinic for a teletherapy session and Doc will advise specific home exercises that will help right side just like you suggested.
The PT Doc is ordering imaging tests I have to do so he can see what prob is first then create a therapy plan for me. I like this idea a lot! One of the tests is a full spine MRI, which I never had a full one done before all the way to lumbar spine I’ve had cervical spine MRI’s to thoracic a few times.
Nikki, I am attaching a copy of an email I had sent to a young women I had talked with at my neurologist's last year as the email explains I live in Indiana and describes mary of the actions that help me with MS, Peter
Dear
I am sending you this email in response our conversation this morning. It is my understanding that you have recently been diagnosed with Multiple Sclerosis
I hope this note may be of some help.
I have suffered with MS since being diagnosed in 1986-and consider myself fortunate, loss of sensory abilities, muscle spasms, weakness and loss of balance have all effected me but it is only within the last 6 years that I can’t drive and only within the last 3 years that I have had limited individual mobility, I am now in a wheelchair.
MS is an insidious autoimmune disease with no cure it effects each individual differently and the progression is different for everyone that is effected. The disease attacks the coating of the body’s nerve endings and leaves a scar (sclerosis) which stops the body from its normal nerve functions. That is a very scary diagnosis but there is hope.
The only remedy for guys like me years ago was to load me up with steroids, now there are a host of disease modifying treatments available still no cure but a real measurable delaying of the progression.
In the past thirty years I have learned what helps with MS.
1. JOIN the National MS Society, MS Foundation and the MS Association of America they are a wealth of information, you are not alone, these organizations report the latest research and successes, club activities and may help with such things as cooling vests so you don’t overheat to body lifts to help you to get up from the floor when you fall because you have limited balance and muscle abilities. The MS Society and MS World Inc. have great monthly publications and the Indiana chapter of the MS Society is also very helpful with programs and information. The Indiana chapter of the MS Society supplied me with stretching guides that I use to help with my spasticty.
2. DO NOT put your faith in any neurologist in Northern Indiana I have gone thru a few over the years ranging from totally incompetent to really nice guys who may or may not help but to get ahead with this disease make an appointment at the Mellon Center at Cleveland Clinic in Ohio or Rush University Hospital Neurology Department or University of Chicago Neurology Department in Illinois. Check medical coverage to see who is in network.
3. MUST CHANGE DIET this is tough but can not articulate how important this is, we are what we eat and it affects everything with MS. I can recommend three cookbooks; Runners World Cookbook, Mediterranean Diet Cookbook there a bunch to choose from and The American Heart Association Cookbook when you seriously change your diet good things start to happen but it is very difficult to get into the routine but I believe it does help slow the progression of MS dramatically.
4. GET AS MUCH SUN AS POSSIBLE, expose as much skin as you are comfortable with weather permitting, all is best but some is good. The more exposure the more vitamin D your skin naturally produces, up until the last few years MS was known as the white mans disease the highest concentration of people with MS per 100,000 is Scotland and Finland the lowest being counties like Indonesia and Brazil therefore a lack of vitamin D may contribute to the disease. Exposure to the sun in moderation is good, I also take a vitamin D tablet daily, no definitive clinical proof but I think it may help can’t hurt.
5. AVOID EXTREMES IN TEMPATURE, too cold causes problems and too much heat and humidity really causes problems just try to stay in 70 and safe and outside when possible but again be careful not to overheat or get chilled.
6. AVOID STRESS IF POSSIBLE, like diet and lack of vitamin D no definitive clinical proof, that I known of but I believe we experience a lot of stress in daily living which I believe is a contributor. Try not to worry and be happy.
7. THERE IS SOME HELP WITH MEDICATIONS, the vast majority of disease modifying MS drugs are tier 5 specialty drugs which are very expensive, organizations such as Patient Access Network (PAN) Foundation and other foundations try to offset costs. These organizations rely on donations to help fund their programs they can help or not help according to their current funding if nothing else it is worth applying for assistance.
I hope this note is helpful I imagine many of my recommendations can easily be refuted but this is what has worked for me. Just remember that you have to get up every day and continue to swing the bat do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis but we do have to live with it.
Sincerely, Peter Banfich
Favorite Quote:
“In the midst of winter, I finally learned that there was in me an invincible summer.” Albert Camus
Post Script:
The following is from a monthly MSAA email publication I receive you had mentioned interest in stem cell treatments, check out this video Stem Cells and the Near and Long Term potential for Stem Cell Treatments in Multiple Sclerosis
Its really hard i just finally strted walkn the mall for half an hour 3 x a week.n goin to planet fitness with a good friend we worked n salon together..my white blood count went down for 2 months i felt better..im always isolated..so it was a god send..she has gotten lupus so we both needed to get out..but since this WORLD illness im back to being sick..i found a used gazzella kinda like a eleptical but it really helps..you can accually do a little more like work one leg etc..but its still so hard to do things in this isolation..prayers hv a blessed day xo
Yikes, I’m so sorry! I don’t have this issue, but I have had to get massage therapy for years. That’s not an option now, so I got a massage thing off amazon that has heat and rolling things. Helps, but also hurts, so I have to use icy hot the next day too. I hope you get sorted soon! Amazon is not shipping anything no essential for a few weeks, btw.
Yes, thanks! I met with a Pain Clinic online last week and Doc will start a therapy plan for me after I complete some imaging tests (full spine MRI, etc). He wants to see what prob is first then create a plan.
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