muscleweakness

I’m wondering if anyone has had muscle rigidity with their EDS? I know it can be a symptom, but mine seems to be spreading and kinda fast this last 6 months. Started in the right quad, 3 fist sized rigid lumps that will immobilize the rest of the muscle. I can actually feel the healthy parts of the muscle engage from the side and pull on the rigid parts at the top. This creates muscle fatigue, and weakness. The rigid parts sometimes hurt terribly. It’s progressed over the last 6 months from the right leg to the illiacus, psoas, and adductors on the right, and now also the left side of my pelvis. I’m looking for any experiences or thoughts on something that may have helped to reduce or support muscle with the rigidity.
Thank you in advance for your insights and wisdom.
#musclerigidity #muscle fatigue #muscleweakness

I’m wondering if anyone has muscle rigidity with their EDS? I know it can be a symptom, but mine seems to be spreading and kinda fast this last 6 months. Started in the right quad, 3 fist sized rigid lumps that will immobilize the rest of the muscle. I can actually feel the healthy parts of the muscle engage and pull on the rigid parts. This creates muscle fatigue, and weakness. The rigid parts sometimes hurt terribly. It’s progressed over the last 6 months to my illiacus, psoas, and adductors on the right, and now also the left side of my pelvis. I’m looking for any thoughts on something that may have helped to reduce or calm the rigidity.
Thank you in advance for your insights and wisdom. #musclerigidity #muscle fatigue #muscleweakness

I'm in the process of trying to narrow down the cause of my worsening muscle weakness. Originally my neurologist thought my bulging disc was pressing on my spinal cord. The neurosurgeon assured me it wasn't and that my assumptions were not normal. He even offered to help me find a neurologist, who would try to get to the bottom of it if mine didn't. So far my neurologist is doing great other than the insistence that I find out if my diagnosis of fibro could be behind it. I don't mind doing that, but only after everything has been ruled out. Mainly because my rheumatologist diagnosed me with fibromyalgia without truly ruling anything else out first. I'm not thrilled with my rheumatologist, but I was able to get my EDS confirmed and diagnosed because of her.

So initially my neurologist thought multiple sclerosis, myasthenia gravis, or cidp were the likely culprits. After my appointment to test reflexes cidp is ruled out, because my reflexes are good. So now I'm waiting on my neck and upper back mri, which is Monday to see if there is any signs of MS.

Amidst all of this, I also need an egg and my neuro wants it from a particular place and provider. They do great emg studies. OK, great. I call them and they work in a pain management office that I've been to before. I hadn't been back because all they wanted to do was injections and I noped out. It caused way more pain than it helped. In the process they are trying to get me to come in for a pain management appointment and I said no, just schedule me for the email please. Onto insurance, yeah! I have 2 insurances. My primary doesn't require a referral for specialists whereas my secondary does when and only when, it is primary. It can never be primary when there is another insurance. It also has to follow the guidance/rules of the primary insurance. I no longer need a referral and I know it. They try telling me I need a referral. I reiterate many times that I do not. I've stayed calm, but emphatic. I end up speaking with the supervisor who decided to call my secondary to confirm. Guess what? I'm right! They should have taken my info and checked with the insurance before arguing about it. I don't count on the doctors office to tell me what my insurance will cover or allow. If I'm ever in doubt I call my insurance and ask. I'm sure my primary will need to approve the emg just like they need to approve an mri, but that's easily done.

With all of that I get told that the emg counts as a procedure, so the procedure scheduler needs to call me to schedule it. A week later I've gotten no calls, so I called back. Evidently the request didn't go through. I know it's probably just an honest mistake, but it feels like they didn't send it because I stood my ground about my insurance. Good news is that I should get a call today or tomorrow. Here's hoping for an answer. #HEDS #MultipleSclerosis #MyastheniaGravis #muscleweakness #rant

I have a large pineal cyst we found when I was 7. I've been having symptoms related to it. I will be going to see a nuerosurgeon this week for follow up from an ER visit I had a week ago to discuss possibility of removing the cyst. I went to the ER because of an episode I had where I started loosing my vision slowly over a 30 min span. Once my vision was regained it was followed my a severe headache to the back of my head and nausea. They ruled out stroke etc. I was told the cyst is large and was the cause of this along with other symptoms I'm having. I've just never met/talked to anyone else who has a pineal cyst. #pinealcyst #Headache #nausea #Fibromyalgia #PeripheralNeuropathy #ChronicPain #muscleweakness #ChronicFatigue #Insomnia

I’ve been getting migraines for about six months. I think bought on by the meds for my Crohn’s disease or from the stress of the Crohn’s disease.

I recently woke up and couldn’t move my right arm or hand. No other symptoms. Though I’d had a migraine the day before and bad diarrhea.

Initially I thought I’d slept on it awkwardly but it wasn’t numb - I could feel my skin when I touched it with my left arm. I just couldn’t move it.

This continued for an hour and my husband decided we should go to urgent care. They immediately called an ambulance and sent me to the ER thinking I’d had or was having a stroke.

They did the stroke protocol and came up with nothing. During this time my arm seemed to recover gradually.

I could lightly grip. Then more and more until back to normal by lunchtime.

Of course, I felt like an idiot for being there but they seemed concerned.

I followed up with my neurologist and he said it was highly likely a migraine. I was pretty surprised by this.

Has anyone else with migraines experienced an episode like this?

Is it like a pre-stroke?

And is leaving my migraines untreated risky?

Any thoughts on this?

Tips and tricks for rocking social events, family outings and clever beauty products to make life with CMT a little easier. New section now up on our site!

www.hnf-cure.org/cmt-hacks
#cmthacks #Charcotmarietooth #CharcotMarieToothDisease #cmtwegotthis #handatrophy #muscleweakness #Fatigue #FootDrop

After months of trying to convince myself and chickening out over and over again, I finally purchased a cane today. Now I just have to get the nerve to actually use it. #sjogrens #muscleweakness #Disabled