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BlsdMama

Medical Update

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So, in a happy update, I am having much more "traditional" MS symptoms.

Having a lot of rib pain and a "swaying" feeling last weekend (so last last Saturday) headed to urgent care and they sent me onto the ER.  The pain was worst in the evening and much relieved in the morning - two days in a row.  The ER doctor there really thought this was something called the MS "Hug" or "Girdle."  

 

The off balance feeling is really unsettling and it comes and goes - I really feel a bit like a drunken sailor. :P  And last night, for the first time, my feet were really cold (chose to drive DH's truck to town and the heat chose not to cooperate) and the right foot felt like it was on fire.  Was THRILLED for the pain. All the fear I had had of ALS was that I had not been experiencing a lot of sensation/pain so this past week and a half of dealing with pain has been nothing short of really wonderful!  I'm sure the wonderful will wear right off soon, but right now it feels like a mountain of anxiety sliding off my shoulders.

 

My appointment with the new neuro is Monday and I'm feeling ready for it rather than fear and trepidation.  I know that MS isn't "good" news and I am so sorry for the suffering that people with that diagnosis deal with in its various forms, but getting ALS out of my head has been a huge relief, even if it was a tiny statistical probability!   Thank you all so much for the support and the encouragement.  The ER doc feels they will probably do a new MRI and a spinal tap.  I'm also going to request a Lyme test through Igenex just to be sure.  If anyone knows of any questions I should be thinking of for Monday, I'm all ears.

 

I'm really wondering if this drop foot could potentially go away -- it's really becoming rather useless and it makes driving a bit of a challenge.

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Glad to hear that this is looking much less like ALS all the time!

 

No firsthand experience here, but I know that some people with some kinds of MS do experience great symptom relief and restoration of function when they are treated.

 

I have a relative with the kind that started in the feet, and her testing always comes back as unusual for MS in some way. She has had (slowly) progressing issues over time. However, she has had a lot of local help through various organizations for keeping her working and able to do things for herself. It's been rough, but local agencies have hooked her up with equipment that helped her be mobile. A local chapter of an MS organization built a ramp for her house to get from outside to inside. She's had a van retrofitted for her motor scooter. All that to say that as soon as you have a diagnosis in hand, I strongly recommend networking with others in the community and particularly with agencies that offer grants to help with things. Maybe you will never need it, but you can probably be a support to someone else, and they can be a support for you in return. 

 

This relative has also had some relief of symptoms/pain with dietary interventions, but it's hard/expensive for her to keep up with (some of the difficulty is logistical and specific to her family, so don't be afraid to try dietary stuff). 

 

 

 

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Glad to hear your good news and I hope your appointment goes well!

 

My Dh has two relatives (a sibling and a cousin) with MS. They're in their 50's/early 60's and were both diagnosed around 20-25 years ago. They've both lived very full and active lives and are doing well. 

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A few of my friends who have MS went through a few neuros and it took a couple of years to get diagnosed.  ***hugs*** May you get some clear answers and good pathway forward to address things!

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Glad ALS is off the table so to speak. Hope the doctors cam help with the MS if that is ultimately the diagnosis.

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Foot Drop went completely away for my husband. He has hardly any symptoms right now. It's called relapsing remitting MS because sometimes things are bad, but it doesn't mean it won't all be better months later.

I am very optimistic and so is my dh. :)

 

If you ever have any questions , feel free to private message me. Really. I would be happy to help in any way I can.

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{{{{{{{{hugs}}}}}}}}}} My son gets MS hugs and they SUCK!!! There is a medication that you can take that will help it, but I don't remember what it is (and am not somewhere where I can look).

 

I'm sure I've said this before, but when my son was dx'ed with MS I was relieved. MS SUCKS! There is no doubt about it. But, there are things that are much worse than MS.

 

Kris

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My dad has drop foot (no MS; he has idiopathic neuropathy). He now wears plastic braces on the lower part of his legs (under his clothes) that keep his toes from dropping as he walks. When he first started wearing them, he claimed that he couldn't tell if they made a difference, but now, a year later, he can tell that they help prevent him from tripping over his toes. (He still drives, though I wish that he wouldn't.)

 

You might ask the neurologist if these kind of braces would be recommended for you.

 

And :grouphug: :grouphug: . MS stinks, but it's better than ALS for sure. I hope that you are able to get a definitive diagnosis from the new doctor.

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{{{{{{{{hugs}}}}}}}}}} My son gets MS hugs and they SUCK!!! There is a medication that you can take that will help it, but I don't remember what it is (and am not somewhere where I can look).

 

I'm sure I've said this before, but when my son was dx'ed with MS I was relieved. MS SUCKS! There is no doubt about it. But, there are things that are much worse than MS.

 

Kris

 

 

Well, the ER was very generous - - they sent me home with 800mg ibuprofen, valium, and hydrocodone.   I have (so far) opted to let them look nice in the bottle so far.  I have this paranoia about addiction.  I've heard lidocaine patches can make it better.  For me, it helps knowing it comes and it goes.... Meaning it eventually has to go, or at least has so far!

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Foot Drop went completely away for my husband. He has hardly any symptoms right now. It's called relapsing remitting MS because sometimes things are bad, but it doesn't mean it won't all be better months later.

I am very optimistic and so is my dh. :)

 

If you ever have any questions , feel free to private message me. Really. I would be happy to help in any way I can.

:001_wub:

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Definitely make sure your neuro is looking for Transverse Myelitis also. Some of your prior descriptions fit, and you may have had a second attack. If it is myelitis it will be important that they treat you ASAP (as well as if it is MS).

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If it is MS, a friend of mine was cured of his MS by a stem cell transplant. It is experimental but worked great for him.

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I was just wondering how things were going with you, having been glued to the reports of the babies for the past week+.

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I don't have MS. but do have what is now often referred to as Overload Syndrome- for me that is a mixture of three autoimmune diseases- Rheumatoid Arthritis, Sjogren's Syndrome, and Lupus.  I also have two other autoimmune conditions.  That is all that I know of but new ones can arise as one of mine just began a few years ago.  I have had the mix of autoimmune diseases since right after I graduated college.  I didn't get my first diagnosis until over ten years later.  I didn't get any understanding of how this really was one giant disease for me until a few years ago- almost 30 years since I first had symptoms.  Anyway. I have had a good life.  Yes, I have had pain and loss of some functions.  But my life has been worthwhile and I have done valuable jobs with this, the most important being homeschooling and graduating my three children. It takes a bit of time to get used to having a different life.  But most of us with chronic illnesses do get used to it and continue to enjoy parts of our lives just as before even if some activities may be different.  

 

Now about the pain pills. The rate of addiction in people with actual pain who get treated is about 3%.  That means that 97% do not get addicted.  Just because someone takes pain pills on a regular basis does not mean addiction.  Addiction involves activities such as upping medication dosages without doctor consent, doctor shopping to get pills, trying to get pills from other friends or relatives, and finally going to the black market.  It does not mean taking medication as prescribed and following precautions such as not drinking alcohol with the pain pills.

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Now about the pain pills. The rate of addiction in people with actual pain who get treated is about 3%.  That means that 97% do not get addicted.  Just because someone takes pain pills on a regular basis does not mean addiction.  Addiction involves activities such as upping medication dosages without doctor consent, doctor shopping to get pills, trying to get pills from other friends or relatives, and finally going to the black market.  It does not mean taking medication as prescribed and following precautions such as not drinking alcohol with the pain pills.

 

Not necessarily disagreeing with this, but would like to offer some perspective from watching a person who takes pain pills for 30 years.  Pain pills are designed to mask pain. The pain that you experience with nerve related issues (such as MS) is what happens when the brain finds damage on a nerve and interprets it as pain. It is not the same "pain" as you have when they cut through your muscles for surgery.  The most effective drugs for nerve related issues are drugs which address this brain/nerve connection and seek to stop/diminish the signal that tells the brain there is pain there. Such as--Neurontin (Gavepentin), Lyrica, etc.

 

Narcotics are not to be used long term. They are designed for acute pain.  There is no clinical evidence they are effective long term.  Usually the person develops a tolerance and needs more and more to address the pain.  Developing a tolerance is not considered the same as addiction. Also there is the risk of hyperalgesia where the body creates more nerve receptors in response to long term narcotic use.

 

As someone whose mom has been on narcotics for almost 30 years for chronic pain, I can tell you that those medications have done nothing but destroy her quality of life. She is still in pain, and she has lost so much mentally and physically from the side effects of the medications.  Tread very carefully when taking narcotics. I was told for years that she cannot become an addict because she has actual pain.  However she still very much has a high tolerance to pain meds. Until recently, no doctor even brought up the issue of what they would do if she had an acute injury.  What do you do with someone who has progressed through all the narcotics to now take diuladid, and is on so much of it that if she ever has a fall, surgery, etc. there is literally *nothing* they can do to treat the pain?  My mom is on an equivalent amount of dialudid that they gave my husband in the hospital following major surgery.

 

My mom is 76.  She can barely walk. She is lost to me mentally. She has to catheterize herself and is losing bowel control.  Many many of her issues are caused  by being on morphine for over 20 years. Please please do not go to pain medication as your first line of treatment.  

 

Please think hard before embarking on a long term treatment with pain medications.  

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Not necessarily disagreeing with this, but would like to offer some perspective from watching a person who takes pain pills for 30 years. Pain pills are designed to mask pain. The pain that you experience with nerve related issues (such as MS) is what happens when the brain finds damage on a nerve and interprets it as pain. It is not the same "pain" as you have when they cut through your muscles for surgery. The most effective drugs for nerve related issues are drugs which address this brain/nerve connection and seek to stop/diminish the signal that tells the brain there is pain there. Such as--Neurontin (Gavepentin), Lyrica, etc.

 

Narcotics are not to be used long term. They are designed for acute pain. There is no clinical evidence they are effective long term. Usually the person develops a tolerance and needs more and more to address the pain. Developing a tolerance is not considered the same as addiction. Also there is the risk of hyperalgesia where the body creates more nerve receptors in response to long term narcotic use.

 

As someone whose mom has been on narcotics for almost 30 years for chronic pain, I can tell you that those medications have done nothing but destroy her quality of life. She is still in pain, and she has lost so much mentally and physically from the side effects of the medications. Tread very carefully when taking narcotics. I was told for years that she cannot become an addict because she has actual pain. However she still very much has a high tolerance to pain meds. Until recently, no doctor even brought up the issue of what they would do if she had an acute injury. What do you do with someone who has progressed through all the narcotics to now take diuladid, and is on so much of it that if she ever has a fall, surgery, etc. there is literally *nothing* they can do to treat the pain? My mom is on an equivalent amount of dialudid that they gave my husband in the hospital following major surgery.

 

My mom is 76. She can barely walk. She is lost to me mentally. She has to catheterize herself and is losing bowel control. Many many of her issues are caused by being on morphine for over 20 years. Please please do not go to pain medication as your first line of treatment.

 

Please think hard before embarking on a long term treatment with pain medications.

:iagree:

 

My Grandma was on narcotic pain relievers for decades, too. Every single one of them were prescribed. Just because she had a doctor as her pill-pusher, it doesn't mean she wasn't addicted.

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I am so glad you are feeling relieved. I come from the area of Oregon where the highest rate of MS is. It was very scary when I was young and several of my parents and grandparents friends were suffering, but I do understand treatment is soooo much better now. It is always good when someone can plan on overcoming even before a diagnoses. 

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One of my teachers (nursing school) has MS. She has mainly good days now, though she told us about how the doctors thought she had a psychosomatic illness until she insisted on the MRI.

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If you are on medications or supplements that raise serotonin, your foot weakness could be caused by having too much serotonin (serotonin syndrome).

This is per Julia Ross in her book The Mood Cure.

I am no doctor :)

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Maybe this will be of interest to you: http://terrywahls.com/about/about-terry-wahls/

Definitely read Dr. Wahls book. She is a medical school professor with regular MS who changed her diet and lifestyle and went from not being able to sit up to an 18 mile bike ride in a year. This was after more traditional treatment merely slowed her decline. She had been a guest on many health podcasts. She is currently running clinical trials for treating MS and other autoimmune conditions with her program. Preliminary results look good.

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Thanks for the update.  It's easy to lose these in an old thread, so I'm glad you started a new one.   I'm also glad the ALS is off the table.

 

I hope tomorrow's doctor appt. is productive. 

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Definitely read Dr. Wahls book. She is a medical school professor with regular MS who changed her diet and lifestyle and went from not being able to sit up to an 18 mile bike ride in a year. This was after more traditional treatment merely slowed her decline. She had been a guest on many health podcasts. She is currently running clinical trials for treating MS and other autoimmune conditions with her program. Preliminary results look good.

She, and the study, are at the U of Iowa. ;) Tomorrow my appt is with the chief of neurology who has been practicing for over thirty years. I feel good about that.

 

I just want to be able to slap a label on this. The fasciculations are really out of control tonight and started in my jaw today. Every time I begin to feel good about MS, the nagging of ALS creeps in. Tomorrow can't come soon enough! :)

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She, and the study, are at the U of Iowa. ;) Tomorrow my appt is with the chief of neurology who has been practicing for over thirty years. I feel good about that.

 

I just want to be able to slap a label on this. The fasciculations are really out of control tonight and started in my jaw today. Every time I begin to feel good about MS, the nagging of ALS creeps in. Tomorrow can't come soon enough! :)

Praying for your appointment tomorrow!!

 

Let us know how it goes if you can :)

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I've been thinking of you. I'll pray for your appointment tomorrow. I know the wait has been hard, and I hope you are able to get some answers.

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I have a friend who was diagnosed with brain cancer and months to live as a single mum of three boys. She threw a celebration party when she was diagnosed with MS instead. As bad things go, for the symptoms it presents, MS is often good news over it's alternatives. 

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