In The Dark

By spider

1 min read

I have not been diagnosed with MS. I have been classified as an older woman with a lot of strange complaints. I have been literally laughed at by my doctor. But when I saw the article on Facebook about some unusual symptoms of MS, it was a lightbulb going off in my head.

Fifteen years of unusual symptoms

My issues have been going on for about 15 years. They include:

Itching, frequently in places that do not correspond with any source and often widespread.
Fatigue. No stamina. This is fairly overwhelming 7- 8 days out of 10.
Insomnia
Sweating, my whole head just pours. I get so overheated I keep a hand fan on me.
Twitching. Restless leg syndrome on steroids in my arms, legs, even abdominal muscles. The twitching can be totally uncontollable.
Vertigo which comes and goes.
Foggy brain.
When my symptoms are the most severe, 3 times I have wet my bed. Without having an overfull bladder. Eeek.
Tinnitus, always there but sometimes much louder than others.
Numbness and tingling in my hands, transient.
Muscle spasms, legs, feet, back and ribs.
Chronic pain, widespread, most have valid origins, although my P.T. told me it was due to my expectation of pain and sort of brain habit, rather than real. This was supposed to be because at times the affected part got painful a day after the activity that caused it. I fired him.

Seeking insight from the MS community

Okay, so those seem similar to what other people are describing who have been diagnosed with MS. I won't know until I can see a neurologist which looks like a 6-month wait. I am hopeful this community will give me insight and suggestions. Especially for the fatigue. Any thoughts would be appreciated. How is MS treated?

Share YOUR own story

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

chong61 Member
Spider, I too am an elderly woman, I am 78. I have had every symptom you mention except tinnitus. I started experiencing problems 35 years ago. I went from a mensa confirmed IQ to trying to remember what words I wanted to use. I worked in a very, very demanding career understanding and projecting a solution. That rapidly left me, thus I sold my two businesses rather than take a risk with other peoples trust. I got my diagnosis 20 years ago and only because I was fortunate enough to qualify to see a neurologist that only treated MS and in a state setting with an MS Center. Please, please ask immediately if your neurologist doctor treats MS. If he/she doesn't, run, run to one that does. When I was diagnosed I was relapsing/remitting. I rapidly went to secondary progressive stage. At that stage my treatment was rapidly elevated. I had adverse reactions to all the disease altering medications such as Copaxone. I had 3 day infusions of steroids by IV and with trial and error we finally hit a course of medications that would at least let me sleep some and manage to live alone. I am not a doctor, but I am hereby diagnosing you with MS, simply because your symptoms match mine a lot. That is not to say there is no other disease you have, just make sure your neurologist treats MS patients. And as a final note, you have just touched the ice burg of MS. It is different for everyone and how it treats them. I can go to feeling good to falling in the floor because of vertigo with no warning. Fatigue is my worst enemy. Being tired you can sit or lay down and rest. With fatigue you are under a 500 lb. weight and no amount of rest will touch it. I hope I have not alarmed you without just cause, so please forgive me if I have. Just be aware there are very different symptoms for each of us, but there are a lot of the same symptoms that control us. Read the articles by Devin, he has the most informative articles. Please keep me informed, I really do care. Arvilla
1. spider Member
 Thank you Arvilla. I too always considered myself pretty bright but I can no longer find the correct word almost once a sentence. I was an RN, a freelance writer and sold real estate in my spare time. Now, nothing. I am trying to move to an area where medical care is better. Hopefully I will see a neurologist soon once Iove. Here there is a 6 month wait. Hope for the very best for you. Spider.
2. spider Member
 Really interesting! Yes, I did have a severe head injury in my early 20s. Amnesia, total, for 3 days. So that is such a prominent link. Wish I could see a neurologist soon but it will probably take a few months. Oh well. Do steroids help? My back hurts all the time. And my speech gets garbled. Sounds like some meds have helped you. Have you found any that make it worse? Thank you so much for giving me another piece to my puzzle. Spider
lindacolorado Member
I have no idea if you have MS, and yet, you are experiencing interesting and annoying symptoms. Have you ever experienced head and/or neck tauma? The research going on right now connecting this type of trauma to the development of MS, as well as other neurodegenerative diseases, has made this connection. To begin, I take magnesium 250 mg to deal with muscle spasms. Next, you might try getting atlas alignment to align your cervical spine. Even though in the progressive stage of MS for 9 years, I regained many lost abilities, some lost for as long as 25 years, via atlas alignment 8 yeas ago. This included getting my eyesight back, the feeling in my abdomen and fingers, the urgency to urinate and empty my bladder, and the ability to form a whistle. I could drive again, read books (and even speed read gone fo 25 years), and no longer get bladder infections, a chronic problem for so many yeas I lost tack. None of my regained abilities have regressed. I still have MS, am still bothered by heat, and wish I could walk further, but the quality of my life has so greatly improved! When it comes to pain, most comes from spinal issues which seem very pronounced in patients with MS.
1. spider Member
 Really interesting! Yes, I did have a severe head injury in my early 20s. Amnesia, total, for 3 days. So that is such a prominent link. Wish I could see a neurologist soon but it will probably take a few months. Oh well. Do steroids help? My back hurts all the time. And my speech gets garbled. Sounds like some meds have helped you. Have you found any that make it worse? Thank you so much for giving me another piece to my puzzle. Spider
2. lindacolorado Member
 Steroids help to address the inflammation (the formation of lesions in the brain are inflammatory). I was allergic to steroids so that was not an avenue for me to address the exacerbations. Switching to an anti-inflammatory diet would have been a natural choice if more was known about it when I was in the RRMS stage. It could have shortened my relapses. I have never taken MS meds as they weren't developed until I had the disease a number of years, and by then, I had learned to manage around MS fairly effectively. I do take a couple of aspirin to get a couple more hours of more function out of my body when I have errands to do. I am sure it thins the blood and is in line with CCSVI. BTW, it can take weeks, months, or years to develop symptoms (caused by the leakage of cerebral spinal fluid from the ventricles in the brain) that lead to an MS diagnosis after head or neck trauma. I also had back issues from high school forward. I took a fall during cheerleading practice that may have caused my original damage. You might consider finding a chiro with an atlas orthogonal instrument to align your atlas disc and cervical spine. When the atlas and C2 are in alignment, the rest of the spine can fall into alignment for most. The atlas orthogonal instrument makes the adjustment with a type of focused percussion. I felt nothing, and yet, was perfectly aligned.
Shelby Comito Community Admin
<inline-mention user-id="4062825" username="spider"/> , thank you so much for taking the time to share your story with us. Another community member, <inline-mention user-id="4011992" username="flamingo"/> , submitted a story in response to yours that I thought you might like to read: <a href='https://multiplesclerosis.net/stories/seeking-diagnosis/' target='_blank'>https://multiplesclerosis.net/stories/seeking-diagnosis/</a> Hope it's helpful and a reminder that you're in good company here. - Shelby, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
1. spider Member
 Thank you!
lightweaver Member
Not able or see today,but am a crazy old woman with MS. I have had most of the symptom described plus more. In the beginning my spinal tap came back fine but my psychical showed the signs of Ms. Over years - 10, i think I had MS. then my neurologist told me to visit another one starting an MS clinic. He told me my spinal weren't anything. i had to prove to him I had MS. He had a list of tests and dr I had to see. Sure was happy my MS just "vanished" My balance and walking was still poor and so one I diagnosed him with Autism-for my pleasure. Never had to see him again. That was 20 years ago. I still have lesions and am not walking well. MS clinics are like chalk on chalkboard. I know my neurologist makes the difference. Hang in there and know how you feel.
1. spider Member
 Isn't it strange how frustrated and unhelpful doctors can become when we don't fit into those convenient little boxes? It has happened to me over and over and I am a retired nurse. You would think I'd know how to convince someone. From now on only female doctors if I can swing it. Take care and thanks for responding. Spider

Community Poll

Did you know that you can create a status update on our site?