Possible MS?

Brain and nerves
1

Before I begin, I'm seeing a specialist soon.

I'm a medically retired veteran suffering from severe PTSD. A few months ago, I posted about my ankle on a different part of this website. To keep it simple, I suddenly experienced sharp and intense pain in my right ankle and the leg would give on me.

Around the same time, I started noticing a black 'burn mark' looking spot in the vision of my left eye. It comes with pain that feels as if it's coming from my left eye itself, and hurts to move it. The small hole in my vision leaves around the time the pain leaves, and comes and goes randomly.

I'd randomly get pain in my left shoulder starting in 2013 that I've ignored or brushed off as over use, until the 12th. I ended up in the hospital because I couldn't move my neck or shoulder without severe spasming and pain. My hand went numb and there was a burning sensation in my elbow. It was hell, and took high doses of valium and a few days to finally subside. I've always had fits of pain, tingling, and weakness in that arm, but largely ignored it.

I now feel like I can't swallow. It's weird, but it feels like my throat is constantly tight, and I have to force food and liquid down. I choke on my own spit more often than I care to admit.

I also get ridiculous spells of exhaustion that I used to attribute to the PTSD, but now I'm not so sure. It's a fatigue even copious amounts of energy drinks and coffee can't fix. After about a week, I'm back to being able to do normal things, like shower, but during the episodes, I can't even get the energy to brush my teeth.

Another weird and not as new symptom, but progressing is what feels like waves of tingles on my scalp. Like goosebumps, but more...electrical? It's odd to explain. I'll also get the sensation in my arms.

Full body muscle twitches are becoming common as well. Nothing super bad but visible twitching on various limbs and face.

Does this sound like others stories? I'm not trying to diagnose myself; my own doctor is concerned, put in the referral, and I'm just waiting for the specialist to call. I'm just trying to see if any of this makes sense to someone else. If it helps, I'm a 29 year old female as well.

2

Hi where in the world are you I think you need to see a neurologist sooner rather

Than later I have had some off the symtoms you describe and initially ignored to

Don't try to ignore them any longer iff here in the UK see your gp and ask him to

Refer you to a neurologist if you can afford it go private things will happen much quicker.

Take care george

3

So glad to hear you have an appointment coming up soon. Is it with a neurologist?

I can relate to a lot of what you've experienced with central nervous system hyperactivity and lassitude .. that severe fatigue. Mine is in conjunction with ataxia so it's probably a different picture .

It's certainly possible that it could be MS although it sounds pretty atypical. There are so many mimics that it's worthwhile to go in with an open mind and begin the testing process.

I'm going to throw out a word of warning though. Doctors, especially neurologists are notorious for writing off symptoms in women as stress or depression if they don't have an easy explanation. With your history of PTSD it will likely be considered.

You know you're body best and clearly there's something amiss. 

Hope you're able to get answers soon but you may very well need to be a patient patient as it can take time to sort it all out.

Best of luck to you!

4

Hi Linaeve

First I want to say I agree with the other two replies.  You need to see a neurologist.

Second, what diagnosis (?) did the hospital give you for the painful episode you had with severe spasms in the neck, shoulder and numbness in your hand.  

The severe fatigue could also come from your thyroid.  So your neurologist will

need to order some blood tests, most likely an MRI of the brain and of the cervical

area (throat, shoulder, neck)  My main concern is your problem with your swallowing

and the choking, and tightness you are having.  Please see a neurologist ASAP

***Important***  Make a list of all the symptoms your are having.  Take it with you

to your Dr's appointment.  If you aren't getting answers, or they seem to think it's due to PTSD, then go to another neurologist for a second opinion.  Your vision in your left eye needs to be checked out as well. The electric tingles most likely are coming from your neck(cervical spine)  I wish the best for you.  Keep us updated

and call to see if you can get in sooner.  Take care.

5

That was an excellent suggestion about making a list of symptoms to bring to your appointment!

I was thinking a bit about the eye issues you had. It sounds like a scintillating scotoma. It's something usually related to migraines which can occur with neurogenic pain and drop attacks. They are also known to cause muscle spasms of the shoulder and neck and surprisingly don't always produce a headache. But as faithinhim mentioned, cervical issues could cause it as well and would explain the symptoms on that side of your body. The difference here is that migraine symptoms are episodic and a cervical issue would most probably be continuous.

It's also worth keeping in mind that muscle twitching is often a stress reaction. An understandable one when facing health concerns or going through traumatic experiences.

I meant to say it in my previous post, thank you for your service (!!) and I hope you find answers soon!

6

Different people I hear go through different things. I was recently diagnosed this year in July. I cried til I couldn't cry no more. I picked myself back up. I went back over my life and figured out I have had this since I was 17 and they just finding it. When I was 17 I had eye problems. My vision would go out for seconds and come back. I went to the eye doctor and he sent me to the hospital and they used me as a experiment cause they didn't know what was wrong so they hospitalized me and ran test after test. They did so many spinal tabs and vision test. They finally said it was sudo tumor cerebral. I was like whatever. I always thought it was something more than what they were saying. Sometimes my doctor would give me Prednisone. That is probably what slowed it down over the years. Now I got a new doctor so he took me off the Prednisone cause I have diabetes. Now over 7 years I got heart failure and I started getting to tired. I had to give my car back cause I was to tired to drive. Then the tiredness got worse. I got sleep apnea now. It got to hard to walk so I started using a walker, then I started using a wheel chair so I'm still in a wheel chair. I'm now taking medicine. I took Prednisone for 2 weeks and it was like something g heavy lifted off my legs. Ow that heavy feeling has came back in my stomach. My left arm is numb in some places, my left hand is numb. .y right leg is half paralized. It's been that way for four years now. Everything on my right side including my private part and right hip is numb but my right arm is not numb but when I was 30 my right arm was numb. So I had these things going on through life but ignored it but now that I'm older I notice everything. I'm having to much relapses. What is the meds doing? Cause right now it's doing nothing. They got me on Betaserum. My energy seems to leave in the evening.

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Hi Babyface

We must be related because we have these issues, or symptoms and we ignore them until

they are screaming, demanding, that we go to the Doctor LOL

I was diagnosed with RRMS  May 3rd, 2017.  Same as you mentioned, I am sure I have had this for at least 5 years looking back at my symptoms.  Ok so my question is how long have you been taking Betaserum?  I have read that it can take several months before it starts to work.  Now, if you have been on it for a year or longer, then it sounds like you might want to talk to your neurologist about switching medications.  I am diabetic, so no prednisone for me

I have stage 3 liver fibrosis, enlarged spleen and kidney problems so I can't take any of the other medications, like Copaxone, or Rebif.  How long are the relapses happening, and how long do they last ?  Do they seem to get better, or just continue to get worse?  I would consider writing down all of your symptoms, then beside each one list if it is the same, better, or worse,

or if you have discovered something new happening.  Contact your neurologist and discuss these concerns.  What are you doing to relax? You need to find something, that makes you happy, listening to your favorite music, favorite movie, write a personal journal, reading,

something you can do that will lift your spirits.  Star gazing at night, it can be so peaceful.

Ok so We have MS, it's not going away. So I decided to make the best of each day. If I feel that I need to have a good cry, I will. However I find that laughter is so much more fun and it does not promote wrinkles or headaches!  I sure wish you the Best. Talk to you later. Take Care

8

Thank you for your reply!

I'm in the US. I asked my VA doc to see the neurologist before because I was having some difficulty finding words while speaking, but he shrugged me off. Without a referral, I can't see the neurologist without paying a lot of money out of pocket, unfortunately.

9

I understand, and you are not kidding with being female and being ignored for the most part.

I have chronic back pain that's been largely ignored because an xray came back normal. My doctor even said it's likely due to the PTSD, but I know what my symptoms for that are and the back pain isn't it.

Coupled with severe migraines and my ankle, the VA doc has been giving me that usual tisk tisk look. It drives me nuts, and it's one of the reasons I ignored most symptoms.

The fatigue is hard to write off. Ive had periods of severe depression and fatigue and thought that was bad, but this is something else. All last week I couldn't even get to basic school work or be bothered to eat, I was too tired. No other symptoms of depression, just falling asleep standing up and even out in public. I was so incredibly tired.

The VA doc finally agreed to let me see a 'specialist' but I'm not entirely sure what kind as he wouldn't specifiy. I'm hoping this new doctor will listen, at least. I have to wait for them to call me, though.

10

The ER called it acute Torticollis, but basically a severe muscle spasm of my neck.

I had my thyroid checked last year as part of a routine work up. My father had thyroid cancer and other thyroid issues, so it's precautionary for me to get that checked every year. Those tests came back normal, but it wouldn't hurt to get it checked again.

I'm about to call the VA to see if I can get the specialist to call sooner, or just see the neurologist at the VA. I can use my Tricare, but specialists tend to frown at patients who don't go through their GP first...that's my experience, anyway.

I'm going to write down all the symptoms and also ask for a Lyme test this go around. I've heard that can produce the same symptoms, and I grew up in the woods of NY. I never had a bulls eye, but I'm sure I've been bitten by ticks.

Thank you for your reply and concern. The swallowing issue is honestly my biggest concern also. My SO watched me fall twice yesterday and said it looked as if I'd been pushed. Had a full plate of food for dinner, and just sat there crying as it fell on the floor. It's becoming too much to ignore, and now my SO wants to get involved. Maybe the doc will listen if my SO says he's worried too.

I will keep everyone update, and want to say a heartfelt thanks again for the concern!

11

I do suffer from migraines, and will definitely be bringing that up!

The pain, tingling, and weakness has been pretty constant in my left arm and right leg. As I write this, it feels like goosebumps down my arm, but without the goosebumps. The pins and needles come and go throughout the day in my left hand, but the burning sensation hasn't left yet. I've noticed, from prior episodes, that it'll subside after about a week or more before starting again.

I'm worried about it spreading into the left side of my face. Currently feels like...touching a battery to my tongue, but on my left cheek and back of the head. That's new, and rather uncomfortable.

Thank you for your reply! I always feel a little award being thanked, but you are welcome. I enjoyed my service, barring the bad event. smile

12

Hi Linaeve,

Keep me posted, I pray everything works out great for you. Tell them its not going to hurt for them to do a MRI if your head and upper back to see if you have ms. The wrongly diagnosed me for years. No more! Make sure you take your list with you. And tell them you want that test. I have been having crying spells, throat is now numb. The heavy weight has lift off my legs and it has came back on my chest now. I pray it works out for me you.

13

Update:

I decided to go to the ER because the tingling was spreading up my face and I had fallen again. The throat tightness was getting to be too much as well, so my SO finally talked me into going.

All blood work, including a thyroid check and vitamin/mineral check, came back normal. Urinalysis was normal. They did an EKG, and that was normal also. Even though I mentioned all of the symptoms and my concerns, they only did a CT scan. The doctor said that came back clear, but also mentioned they only did a quick glance over for stroke signs or brain tumors. When I asked if there were any lesions, she said she didn't see any but that didn't mean it wasn't possible. She didn't think it was an emergency to get an MRI or spinal tap, but suggested I get that done in an outpatient setting.

Then....and I swear I broke down in tears which didn't help, she basically asked if I thought this was just anxiety from my PTSD and asked if I had a behavioral therapist. I've been in therapy for over eight years, I know my g-dd-mn symptoms, and this is the entire reason I just ignore issues that aren't visible (like an open wound). She told me to take my Atarax and see how I feel.....I was taking Valium for the wry neck, and the other symptoms didn't dissipate at all; I doubt an anti-histamine (used for anxiety) is going to do much.

I'm feeling a little disheartened and defeated, but I broke down and made an appointment with an actual neurologist instead of waiting for the specialist (whenever that call will come). I won't be seen until December 5th and I'm going to be paying out the behind, but I want to make sure it's not 'all in my head'. I won't give up. But I'm definitely going to do my best self-care for now, and try to ignore the awful numbness, weakness, tingling, pain, and embarrassing falls for now.

Thanks for caring, ladies and gentlemen. I don't have much of a support group outside of my SO and therapist, so I greatly appreciate your kind responses. It means a lot to me.

14

So sorry to hear about this experience! Unfortunately it's not surprising. ER's are strictly triage and complex neurological presentations are not something they can diagnose (unless it's a stroke or brain tumor). I can understand why you went though. It's scary!! 

If you want to share your email I'd be happy to talk more about all of this. These forums are too public for me to feel comfortable sharing anything more than vague details.