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Fasciculations throughout body, IIH, parasthesia, and hypersensitivity?

I am currently dealing with fasciculations and pain in hands and feet. This is my first time posting in a place like this. I am sort of weary of Dr. Google and looking up my symptoms. Here's the run down... maybe someone out there can think of something I haven't:

One year ago, I was six months post partum (I had a bad epidural experience!) when I began seeing spots in my eyes. Turns out it was papiledema in both eyes. Graded as moderate. Brain MRI and LP concluded that I had IIH. I began a diamox regimine and lost 40 lbs and somehow stagnated after 40 lbs. It's important to note that as soon as i started the diamox, I began experiencing parasthesia in my hands, feet, and face. However, the parasthesia was not so bothersome that I wanted to risk stopping the diamox (after all, I could have permanent visual damage). So I noted that in my mental notebook and kept on dealing with the endless issues from the IIH. In January (six months into diagnosis), my papiledema had improved so much that my Opthamologist rated it as trace and said that I could come off of my 250 mg Diamox. So, I did. Within a week my papiledema was back to moderate in one eye and mild in the other. I also became very sick. He put me on 1000 mg sequels of diamox (four times the dose I was on before). I had noticeable damage to my vision so much that I needed glasses after that episode. I have had diplopia ever since January. I noticed that my parasthesia was getting worse in frequency and intensity as well.

I went to my chiropractor who used a tens unit on my back to loosen the muscles. The last time he used it on me was before my pregnancy almost two years prior. I always remember my tens unit number was about 19 or 20. This time he asked me, as usual, to tell him when to stop the intensity. He eventually said that he wasn't going to go any higher. I looked over and the unit was at 30. I barely felt the intensity of the tens unit. This was extremely alarming and he questioned if I was having a hard time feeling in my back. I then recalled something that I had completely put out of my mind: In 2013, i started suddenly having these electrical shocks in my back. One day, I noticed that I could not feel a section of my back (lower c-spine, upper t-spine). I ended up seeing a neurologist who did an MRI and didn't find anything and gave me some medicine.  The electrical issue stopped but the numbness never went away. I had just learned to live with this little numb spot on my back. Of course, now that I was seeing this number 30 on a tens unit that spread across my whole upper back, I was especially alarmed. I went home and prodded and poked on my back for weeks. I concluded that yes, there was loss of sensation but that I could still feel some sensation and pressure.

So when I was due to see my IIH neurologist again in May, I brought up what had happened. I also mentioned that the parasthesia had been getting worse in my hands, feet, and face (bi-lateral). He ordered a full spinal MRI with and without contrast. There was no sign of MS. The MRI report for cervical spine said the following: "Impression- Right posterior lateral disc extrusion and associated small osteophytes resulting in right lateral recess narrowing, at C5-C6."

The thoracic results were unremarkable.

The lumbar results said the following: "L3-L4- Minimal diffuse disc bulge with mild posterior facet and ligamentum flavum hypertrophy. Mild spinal canal and bilateral neuroforaminal narrowing. L4-L5- Disc desiccation. Mild diffuse disc bulge with posterior facet and ligamentum flavum hypertrophy. Mild spinal canal and bilateral neuroforaminal narrowing. L5-S1- Disc desiccation and moderate loss of disc space height. Mild diffuse disc bulge and posterior facet arthropathy with mild spinal canal and bilateral neuroforaminal narrowing."

Since the MRI, I have experienced completely new symptoms in addition to the parasthesia, diplopia, IIH, etc. I had to go to the er for a gallbladder attack. Function was 24%. I chose to wait to see if things would improve. They have but I still get occasional fevers after meals. I also had a colonoscopy done because of the intense pain when using the restroom (this lasted for a few weeks around the time of the gallbladder attack). The colonoscopy was normal. (Side note: there also was a discovery in January that I had a dermoid ovarian cyst -6cm- on my right ovary. I have since developed another one on my left).

Anyways, about two weeks ago, I thought I was stung by an insect on my back. When I got home, I asked my husband to let me know how bad it was. He said that there was nothing there. I could not believe that because it was clearly a sting from an ant or something. Sure enough, the mirror agreed with my husband. I then noted that there was a tag in my jeans that was exactly where the sting was. I thought this was very strange because I knew the tag must be causing it but the pain didn't match what I should be feeling (it was way too intense for a tag irritation). Over the next day I began to have a noticeable progression of sensitivity. Then, when I went to sleep the next night, it was short lived. I woke up over and over. My feet hurt. My hands hurt. My foot resting on my other foot hurt. My hand under my pillow hurt. Everything hurt in my hands and feet. The pain was what i would imagine shingles or gout to feel like. It felt like acid or burning buildup in my joints. Now, of course i have had all manner of blood work and although ana positive twice, i have no reflex... so its a false positive. Plus, I came out totally clear for RA. I had never experienced joint pain or any feeling like this before. The whole day was desperation. I called my neurologist in desperation and they called me back and said that it was anxiety. They gave me lexapro which I began taking.
Temperature sensation was also extreme. Hot and cold. My hands were the worst. My feet second. As the day went on, I noticed that one of the sensations felt like movement. I looked down at my calves and there were fasciculations throughout my feet and calves. I've always had cramping in my legs so I didn't notice it among all of the pain. This was two weeks ago. The fasciculations have not stopped. They've spread. The ones in my calves are constant. I have intermittent ones in my torso, thighs, arms (upper and lower) and my fingers sometimes twitch for a few minutes. The pain subsided however (even though the fasciculations did not) and I just started to deal with it and tell myself thay maybe this was anxiety after all. Then last night another wave hit me. For some reason it hits when I sleep. I woke up all night up from the intense pain in hands and feet. I was then reminded that this couldn't be anxiety. Out of desperation again, I called my doctors (all of them). I can only get in to see my regular doctor on Monday. I plan on showing her the fasciculations in my legs and explaining the pain. I feel as though I'm an idiot when I get into these doctors offices because they often look at me with a concern that all of this is somatic. I understand the minds ability to affect the body but I just really think this isn't anxiety. I hope it is though. Is it possible? The alternatives are not good so I've been hoping it's some crazy physical manifestation of anxiety. P.s. they haven't done an EMG/NCS.
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Avatar universal
Hi there,

I just wanted to share a little bit about what I have recently went through to give you some peace of mind.

First off, I am a male, so some of the stuff I can’t really relate to the run up of your fasciculations. However, for about 3 weeks I’ve been having calf pain, heavy leg feeling, and 24/7 twitching in both my calves with random “hit and run” twitches over my body. Now, I suffer from pretty bad health anxiety and previously to the twitching, I had some digestive issues that really worried me for a few weeks. I had to have an endoscopy/colonoscopy and have never been put under before. So, my anxiety was through the roof. Work has been stressful too, so I didn’t really have a break from the stress. Then the twitching started. This sent me down a really bad road thinking about all sorts of bad things which then made the twitching worse. I saw my GP and a neuro. The neuro did a clinical exam and order an EMG/NCV for peace of mind. I just had the exam today and the doctor told me it was, “super normal”. He mentioned there is something calls begnin fasciculation syndrome. He said it can come on after a virus, stress, or no reason at all. The good news is this is a completely begnin condition which is just annoying to deal with. My advice would be to just ask for the EMG and get your peace of mind.

Hope this helps a little bit.
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It does. I can deal with the twitching but when the pain hits in my hands, it's just awful. I am going to ask for some lyrica or something to help with the pain when it hits. It is very bizarre pain. Hyper sensitive skin. I believe a lot of it could be stress. I'm a master's student and we have been dealing with a lot in our family so I've entertained the idea of it being anxiety. I just have a hard time believing this pain is from anxiety. Hopefully the emg  will help give us answers. Thabks for your feedback.
If you have been in a high state of anxiety for a while your nerves can be hypersensitive. I get moments where I lay in bed and feel like my entire body is buzzing. I would also look into fibromyalgia. It runs in my family, and I think that has a lot to do with my physical state. Lyrica should help a lot!
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