NeuroTalk Support Groups - new member with questions

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new member with questions

Hello. I am new to this forum. I do not know if I have MS. First, I am not in the typical age group, I am 63. Symptoms started 2 years ago with continous head aches, often unable to sleep due to the same. Had 2 episodes of ceiling spinning and vertigo. Had 2 episodes of visual scotome.
I also had had terrible leg spasm of both legs almost every night for months. Went to eye doctor after 2-3 months. I had MRI, it showed a few things: Demyelinating lesions suspecting possible MS. Cerebral aneurysm, and a silent stroke. So, first priority, I had a endovascular embolization repair of the aneurysm right away. ( I was so lucky this was found before rupturing, I almost think it was a miracle that I had the headaches)
I have sincebeen feeling very fatigued in the last 2 years. Have some balance problems some times. For the last 1 1/2 year, I have been feeling tremours/vibrating feeling inside in afternoon. I have developed terrible burning pain all over, this getting much worse for last 6 months. I have had pins and needles in arms( but it could also be due to a herniated cervical disc. Now I have felt heavyness in legs sometimes after the burning pain has been on for a while For the last 6 months I have had more and more numbness in feet, mostly left, and also hands. I have a negative EMG. The Rheumotologist says it could be small fiber neuropathy.
I feel a shakyness/unsteady feeling sometimes. It feels like the ground I am standing on is shaking. This happens often when there is a lot on noyce and activity around me. I have also felt it sitting on a sofa or lying in bed, it feels like it is shaking under me. I have been seen by neurologists, had repeat MRI with contrast both of brain and spine, to check for new lesions, but there has been no new lesions. I have been checked for Sjogrens, and have had all the lupus blood tests. All negative. I hav been diagnosed with leucocytoclastic vasculitis, with skin lesions on legs.
But the terrible tremor feeling especially when I get tires, continous. And it seems to bee worse now. It seems to be worse with the neuropathy pain. I have not had a spinal tap yet, due to being on 2 blood thinners.
Could I have MS? I feel that I must have some CNS involvement due to the symptoms. Or I could be having systemic vasculitis? I am going to have a biopsy of lesions in the bronchi due to findings on bronchoscopy
I apreciate any suggestions
thanks

First a Big Welcome to you for finding us.

I wish that I had a Crystal Ball that I could see into that would give you a definitive answer to all of the issues but I don't. I received my dx of MS when I was 57. I am sure that there are others that may be of more help. Your neuro may be able to prescribe something to help with your fatigue issues. I take Provigil and I have also use Amentadine the both worked and helped me get through the day.

May you find the answers you seek and be able to keep your sense of humor for it will help you get through the days.

Welcome, Synnove. I’m glad you found us.

You certainly do have some symptoms that sound like MS, but I’m sure your doctor will tell you that you have to rule out lots of other diseases before you can pin a diagnosis on it.

I was 59 years old when I was diagnosed, and I had had the disease for many years. It was my first MRI that showed what I am told are typical MS lesions.

In any case, this BB is a really nice place to be, and we love to hear each other complain. That way we don’t feel so self-conscious when we whine a bit ourselves.

Welcome!

Welcome to NeuroTalk Synnove.:) Nice to meet you and glad
you joined us.

There is no age certain, when MS raises it's ugly head, anymore.:mad:
It has a life of it's own.:rolleyes: And yes, it is usually by a process of
elimination, that MS is DXed.

Stick with us and we will help you thru your journey.:hug:

i can't answer the medical Q's but i'm glad you found us too.
i'm glad you got the aneurysm corrected and you're ok from that standpoint.

i hope you get the answers you need.

Quote:

Originally Posted by Synnove (Post 953997)

Hello. I am new to this forum. I do not know if I have MS. First, I am not in the typical age group, I am 63. Symptoms started 2 years ago with continous head aches, often unable to sleep due to the same. Had 2 episodes of ceiling spinning and vertigo. Had 2 episodes of visual scotome.
I also had had terrible leg spasm of both legs almost every night for months. Went to eye doctor after 2-3 months. I had MRI, it showed a few things: Demyelinating lesions suspecting possible MS. Cerebral aneurysm, and a silent stroke. So, first priority, I had a endovascular embolization repair of the aneurysm right away. ( I was so lucky this was found before rupturing, I almost think it was a miracle that I had the headaches)
I have sincebeen feeling very fatigued in the last 2 years. Have some balance problems some times.

For the last 1 1/2 year, I have been feeling tremours/vibrating feeling inside in afternoon. I have developed terrible burning pain all over, this getting much worse for last 6 months. I have had pins and needles in arms( but it could also be due to a herniated cervical disc. Now I have felt heavyness in legs sometimes after the burning pain has been on for a while For the last 6 months I have had more and more numbness in feet, mostly left, and also hands. I have a negative EMG. The Rheumotologist says it could be small fiber neuropathy.
I feel a shakyness/unsteady feeling sometimes. It feels like the ground I am standing on is shaking. This happens often when there is a lot on noyce and activity around me. I have also felt it sitting on a sofa or lying in bed, it feels like it is shaking under me. I have been seen by neurologists, had repeat MRI with contrast both of brain and spine, to check for new lesions, but there has been no new lesions. I have been checked for Sjogrens, and have had all the lupus blood tests. All negative. I hav been diagnosed with leucocytoclastic vasculitis, with skin lesions on legs.
But the terrible tremor feeling especially when I get tires, continous. And it seems to bee worse now. It seems to be worse with the neuropathy pain. I have not had a spinal tap yet, due to being on 2 blood thinners.
Could I have MS? I feel that I must have some CNS involvement due to the symptoms. Or I could be having systemic vasculitis? I am going to have a biopsy of lesions in the bronchi due to findings on bronchoscopy
I apreciate any suggestions
thanks

Welcome to the forum:)
I am 57 years old and had similar symptoms in 2012. Continuous headaches, vertigo, tremors, diarrhea, ear aches, tinnitus, could not sleep,blurred vision, lesions and a rash to back, abdomen and scalp. Thought I was dying! Went from physician to physician and they were all puzzled. Got tested for Lyme Disease, results were negative, wore a holter monitor, had echocardiogram, all negative, had ova & parasite done to stoll, all negative, blood work done, all negative, had MRI of the brain and came back with white matter lesions. I got a referral to a Neurologist.

Took awhile before I got an appointment with Neurologist, so I continued to do some research on my own. I took a mycotoxin and fungal identification urinalysis test from EHAP labs:) and VOILA! The tests came back positive for mycotoxins and fungi inside of me. I was floored!At the same time I was happy to finally reach a diagnosis, before it was to late. Traveled to Georgia to The Mold Treatment Centers of America, they assessed, evaluated and educated me. Gave me a treatment protocol that I am following at present. My symptoms are all subsiding & starting to feel better. Many Thanks to the Mold Treatment Center of America, the only one in USA. I have an unending gratitude for MTCA Staff Members.
I did go to the Neurologist and she was thinking that I had MS and ordered a spinal MRI with and without contrast. A few days after my appointment with the Neurologist, I called her office and gave her my diagnosis, she stated I did not have to take the MRI of the spine, if I was improving. Just thought I would put this little bit of information out there. I know of people that have multiple symptoms like me and have been misdiagnoised for MS, Lupus, Fibromyalgia, Etc.... I am not a physician, but I have certainly learned a lesson and received a very good education on pathogenic mold. Hope I was Helpful.:)

Quote:

Originally Posted by Magnolia777 (Post 954171)

Thanks for sharing that. Your story interests me. I have a few questions if you don't mind? Well if you don't here they go haha

What made you think about mold being the cause of your symptoms?
Also do you know you were being exposed to mold?
Was anyone else around you like people you lived with or worked with affected as well?
I'm asking because it has crossed my mind that something in my house is making me sick simply because my symptoms started after I moved here. However my husband and my son are just fine so I just keep pushing that thought out of my head.

Please share if you don't mind...

Quote:

Originally Posted by keepingfaith (Post 954229)

Yes I was exposed to Mold.
Yes, I knew I was exposed.
Yes, other people around got sick with similar symptoms. Also, my Vitamin B12 level plummeted, my TSH, thyroid number went up, which meant my thyroid was low, not working. Persistent cough for months, hair loss and short term memory loss and chronic fatigue. I kept telling the physicians i was exposed to mold, but the physicians are not taught about mold. I even had one tell me he was not knowledgable about mold. Doug Kauffman, Know the Cause is on T.V. during the weekday at 10:30am. He also has a website, Know the Cause. Look up mycotoxins, Trichothecenes, Ochratoxins, these are mycotoxins. I have a minor in biology. I took Microbiology and remembered what our instructor taught us about fungi. Thats what made me think I had fungi and mycotoxins inside me. Mold Treatment Center of America has a web site also. EHAP Labs is also on the web. You do not need a doctor order to order a mycotoxin urinalysis. I would get your house checked out by a Mold Inspector. A professional that does Mold Inspections only. Not one that does mold inspection and mold remediation. I got my home inspected by a mold inspector, he did 3 air samples and ELISA testing for allergens. No Mold in my home. I was exposed at work. Please do not wait for inspection. This is a slow insidious illness. I was exposed for several years. Your in my prayers Lady! Heart:

Hi Magnolia.......Thank you for posting the info about mold, fungi, etc. My ex's (yes, we're still friends after 24 years and 22 divorced) wife has been in the hospital since before Christmas with a fungal infection. She does have lupus and circulation problems with her legs, so it took quite some time for her to be properly diagnosed. I'm definitely checking out those websites you mentioned and passing them on to them.

Welcome:Wave-Hello:

Your welcome Judy:)
There are people that do not know about pathogenic fungi, so they must be informed. I pray that your friend gets better. Its a long road. I keep my chin up and smile. Thanks for the reply. Yes, its a good idea to look up these websites, they are very informative. Must be on a strict diet with fungal indfection. Have a Great Day!:)