Comments on: Wrongly Diagnosed with Multiple Sclerosis? Take a Peek at the Early and Secondary Symptoms of MS

By: kathy

kathy — Sun, 08 Nov 2009 19:07:13 +0000

ok, maybe someone out there can help me. I am 51, was diagnosed with Mixed Autoimmune disorder, which means that i have symptoms of an autoimmune type disease, but my rheumatologist says it hasnt shown itself yet. I have had many symptoms the last 15 years… but now am experiencing new(about 6 months) ones. when at rest (mainly) i have muscles that jump/fire/jerk. they can be anywhere, but tend to be lower extremities, I mean my whole body moves when it happens. also, at times, my arm or hand will jerk, which can cause it to literally look like i waved my hand. tends to be on the right side vs left. also can feel muscles vibrating at times and that is anywhere, even abdomen. at times, i think it is my cell phone vibrating at my waist…. very weird. my vision is decreasing somewhat but I am old and have increased my readers strength. over the last month or so i have started having awful cramps in my calves. usually just one, but a couple of times both legs. they stay sore for days.

I must add I am a nurse and am starting to worry because they seem to be progressing.

anyone out there with any feedback.

kathy

By: Mary Fox

Mary Fox — Sun, 25 Oct 2009 20:38:58 +0000

I was thinking that I may have CHIARI, like my 14 yr. old grandson and 18 yr. old granddaughter, brother & sister. Boy had back of head surgery with section on bone replaced with goat gut or something. Girl is on meds for headache, most common symptom. She may need surgery. We Live in RI and they both go to RI Hospital and also in Boston somewhere. Can’t wait for your response. Meanwhile, I just take it easy and keep busy mentally with hobbies. Calligraphy & genealogy. Oh, I do have some tremors in just fingers with tingling in forearms and hands with burning feeling and it is also in the feet. bottom seems to burn, but not for long. thank you for your patience. Mary

By: Mary Fox

Mary Fox — Sun, 25 Oct 2009 20:32:14 +0000

So interesting. At times, I have wondered if I may have MS. On the left side of my brain, near temporal area, is some scar tissue. The neurologist does not know where it comes from. I am a 76/77 yr. old female and had first seizure at age 73 and 2nd one at age 76. Unconscious for a few days, I didn’t know what happened. Sodium & potassiom low in both cases and newly diabetic of almost 400 glucose. I ate 1/2 gal of ice cream, a cinnamon bun and half of danish. went to sleep and cannot remember anything for a few days. Very swollen tongue. Unable to eat or drink and tongue bitten immensly. The MS symptoms for MS are familiar to me, but with rotator cuff tears and pain up side of neck, and head and tenderness in back of head, when touched. Could it be MS?

By: Brennan

Brennan — Sat, 24 Oct 2009 09:15:33 +0000

It seems to me that any autoimmune illness, or those of the central nervous system or autonomic nervous system for that matter, are an indication that the blood/brain barrier has been breached. That would mean the brain is under fire from the invasion and symptoms that “appear to be” those of a mental illess like bi=polar are inevitable. Depending on which area(s) of the brain is being attacked the manifestation via symptom varies by individual.

By: Debra

Debra — Sat, 24 Oct 2009 09:09:17 +0000

Marty P,
Thank you for sharing your story about your wife. I am sure you do miss her still to this day. Sweet of you to come to this page, read and comment. When I was reading your post, I too, was wondering if she had been diagnosed when she first started going to the doctors would that have helped her. I have never read or heard of such a case or quick death. I had my diagnosis within 6 weeks 15 years ago. My doc was fabulous at diagnosing his patients pretty quickly, that heard from medical staff. Anyway Marty May God bless you, you seem to be a nice fella.

By: Debbie

Debbie — Tue, 25 Aug 2009 08:20:12 +0000

My 27 yo daughter was just diagnosed with MS and I am terrified of what today and all the tomorrows hold for her! She has three young children (youngest just turned 1) that need constant care and she’s tired and in great pain all the time. She hasn’t started the injections yet — that will be next week – but she has mood swings, limbs that don’t want to move, fatigue and blurred vision (for the last year – thought she needed glasses) One day last week she couldn’t see for a short period of time and got really scared. (So, does that mean she’s more advanced or it’s just in that part of her brain?)

All of this started with her getting sores on her face that wouldn’t heal then the one above her eye abscessed. She also had a lump in her jaw that was causing her problems and she was just feeling lousy and in pain. So she went to HF Main and a lady (nurse?) (social worker?) really “heard her” and immediately applied for emergency insurance. They discovered she had mono and fluid on her neck with was eventually drained. When she mentioned that it felt like something had burst in her head, an MRI was immediately ordered which showed there was something abnormal in her brain. At first, it was said that it was like a nodule but still not understanding what – they told her they thought it was MS. She came home that evening and said they think I have MS. Just like that sentence reads…..She wasn’t crying or angry or even upset because she didn’t know what it was. When she looked it up on the internet the next day, she asked my mother (her grandmother) if what it said was true. Then she went into denial. No one was to know, if she didn’t go and hear the final diagnosis it wouldn’t be true, she cancelled and rescheduled her neurology appointments but did have the second MRI late last week.

It and the neurologist confirmed the diagnosis today. I was supposed to go with her to the appointment to take notes and lend support but the appointment was suddenly changed from Wednesday to this morning and I couldn’t be reached in time.

The next step is for the nurse to come to the house and giving and teaching her how to give herself injections. (What type of injections are these?) She has new sores on her elbows and is running fevers! They have her on strong pain pills, muscle relaxants and antibiotics right now. I feel like I really let her down when she needed me the most.

I think looking back with the little I know about MS that she’s probably had it for at least a couple of years. She’s had so many illnesses and pain that no one could pinpoint why. It’s scary and I’m afraid for us all!

I’m sorry for the length of this “comment” but we could use your advice, support and wisdom because denial, anger and crying isn’t going to make this unreal or go away. And, I know being proactive is the right approach but how do you get there, what do you do to fight it so its progression is slowed way down or it’s in remission more than not?

THANK YOU

By: kitty

kitty — Fri, 21 Aug 2009 05:49:16 +0000

In response to Maria’s message, NY Presbyterian Weill Cornell Medical Center is known to
have specialists in Multiple Sclerosis in their Neurology Dept.
The Neurology Dep’t for further information can be reached at 1-212-746-5938

NY Presbyterain Weill Cornell Medical Center 525 East 68th St, (York Ave and 68th) NYCity
1-212-746-5454

By: kitty

kitty — Fri, 21 Aug 2009 05:29:54 +0000

In the event that you may have missed the recent news of a new Multiple Sclerosis Drug
created, has completed the requisite 3 clinical trials and awaiting FDA approval. It is
the product of The HUMAN GENOME SCIENCES RESEARCH COMPANY – A biotech company
in association with NOVARTIS PHARMACEUTICAL CO.

There is a Website for this Biotech Company. This company also has a listing on the
website for the NYStock Exchange,with background information on this new MS drug.

By: Jackie Holloway

Jackie Holloway — Thu, 20 Aug 2009 21:20:52 +0000

I was diagnosed in 1995. My first few tries with doctors did not work. I met this lady who told me to go to the ms clinic at UC Irvine. I finally got help and support. The ms society can help direct you to a good doctor. Most people just need a little nudge in the right direction to find good help in getting a diagnosis. My heart goes out to all the people who need help. In southern california we have a very good ms society support system. I hope everyone gets the help and support and diagnosis that they need.

By: Partner

Partner — Thu, 20 Aug 2009 20:20:01 +0000

Actually, I have read that now whenever someone is diagnosed with a mental illness that they need to be evaluated for MS. The bipolar disease is very real and the hardest to deal with – especially for the family. My spouse has bipolar and has MS although still walking and working (barely on the latter). It has nothing to do with being diagnosed with an awful disease (depression that one would expect from any tragedy), rather, it’s the brain not functioning right. Mild dementia (not Alzheimers or old age dementia) is fairly common too in Ms as parts of the brain are fried. Unfortunately, most neurologists don’t admit to these comorbid diseases. We went round and round … finally got the bipolar diagnosis then the MS diagnosis. Unfortunately, the treatment for MS makes bipolar worse and treatment for bipolar makes MS worse. Still in the dark ages on all that.