unknown
 

hi im also new here.. im in the unknown too with my symptoms.. thought talking about it may help.. every day is a battle at the moment..

Welcome Clayton.:hug:

Welcome to our community Clayton,

yes, talking about it and getting support from those that have gone through it is a big help. Looking forward to hearing more about what you are experiencing. We are here to support each other, so pull a log up by our campfire and feel free to join in our conversations.

With love, Erika

Newbie
 

Hello,
I'm a newbie here 34 year old male recently diagnosed scared out of my tree. On first txt of solumedrol scared even more. Feel very overwhelmed with all of this and how to look at my kids without crying. Very emotional but finding this site very helpful. Thank you all for your positive stories. They don't want to wean me post solumedrol my neuro says it's not needed what can I expect?
Chris

Newbie
 

Hi, I'm Deborah and I have MS. I was diagnosed last year and am 55 years old. I use Rebif and am grateful to have a place to go where people understand the pain, exhaustion, twitching, etc that I feel every day.

I also have two sisters-in-law with MS at different stages. Karen has RR and Kim has lost most function. She's had the disease for more than 20 years, long before there was any good treatment.

In spite of everything I am dealing with, I feel fortunate.

So...I'm glad to be here and see what's really going on with this disease.

Deborah

Welcome Home Deborah.:hug:

Welcome to our community Riderfan & Deborah.
Sorry for the late welcome Rider, I've been goofing off lately and missed your post :winky:.

Sure hope that you both find the support and info here as beneficial as I have. I'm looking forward to seeing you both on the board forums.

With love, Erika

New Introduction
 

Hello,
Just signed up due to all the support and feedback i have notice while reading through these threads. It's nice to have a place that knows what's going on and has or is dealing with similar things. I am a 30 year old male that was diagnosed with RRMS in 2004. I thought it could be beneficial to join a community of like minds and attitudes towards coping and dealing with the disease. I'm fairly comfortable with where I'm at in my stage of MS. I have syptoms and some days are waaay better than others. However, for the most part i have come to grips that this is my life now and I need to make the best of it. Okay, thanks for letting me share. :)

Welcome home Weegie.:):hug:

I'm a newbie!
 

My name is Kelly and have been experiencing symptons for a month now. Worst thing is my hands! They feel as if I've been holding snow balls for over an hour and have frostbite. Other symptoms (numbness and tingling in my feet and numbness in my entire lower body as well as the girdling around my mid section) have decreased somewhat in the past week. An MRI of my brain has apparently shown myelin evident in the brain so my primary doc called me this evening to give me the news. Still going to follow up with a neurologist to see where to go from here. Looking forward to getting good info and support here! Thanks!

Hello Kellie and welcome. So glad you found us. Ugh, the diagnosis process begins.
I hope it happens fast for you. It sounds like your Doc has found signs of MS.

You are in the right place for understanding and support. Please let us know
what your Neuro says.

Good luck and good wishes..:hug:

My son most likely has MS
 

Hi,
I just signed up. I am a mom to a 25 yr old son who most likely has MS. He just told me about 2 wks ago and I have been reading books and webpages, watching videos, and learning all I can about MS.

About 6 yrs ago, Joel was have severe headaches and he went and had an MRI done. He was told by the neurologist that all indications pointed to MS and that Joel should have further testing. Joel did not tell anyone. He did not get any further help because he was not having any other issues at the time. Now, things are much different. I knew something was wrong during the last year and I finally had to confront him about it. I was afraid he was on drugs, so I made him tell me. He said he was sure he had MS.

Joel is walking with a cane and has pain, tingling, and numbness in his feel and legs. Extreme fatigue and insomnia are big issues. He is very forgetful and he went from 185 lbs to about 160 lbs within about a year due to nausea. He is so thin. He has trouble writing and has sensitivity to heat. There are other symptoms. He has moved to Colorado because the only thing that seems to help ease the pain in medical marijuana which he cannot get here in TN. It's hard to be so far away from him and not be able to help him more. He has difficulty keeping a job due to the symptoms. With no medical insurance, he is not seeing a doctor and has not gotten a definite diagnosis yet. I am hoping there is help for him out there somewhere.

Anyway, that is our story. I'm glad to be here.
~Gypsy

Hi Gypsy and welcome to NeuroTalk.

I know it's got to be hard being so far away from him. Have you told him about this site? He could get some great support and advice here.

I hope he will be able to get a diagnosis from a Neurologist and start some sort of medication. There are lots of programs for those who cannot afford the high priced DMD's there are for MS.

I just started Tecfidera and am on the Active Access med program because there is just no way I could ever afford the $5K it costs for this med.

I hope you and your son continue to come here.

Welcome Gypsy.:). I hope your Son comes home, where he'll have the support,
he needs and deserves. I would not be a happy camper, without my DD and
SSons close.

I hope things settle down for him and for you.:hug:

Kitty, Thanks for the welcome and the kind words. I will check on Active Access.

Hi Sally,
Thank you for the welcome! I love your little quote about the world sucking...lol. I did tell Joel about this site and I will be back often. :)

New to MS Forum
 

:grouphug:

I just joined this group, although I'm not new to MS. I've had Primary Progressive MS for 20 years, so I can understand and sympathize with many MS patiients.

As time goes on, maybe I will be able to help others find ways to deal with MS symptoms that I, too, have experienced.

Are there other PP and SP folks on this forum? I'm looking forward to getting to know you all.

msbluis (Ms Blue Eyes)

Hi Gypsy
 

About 6 yrs ago, Joel was have severe headaches and he went and had an MRI done. He was told by the neurologist that all indications pointed to MS and that Joel should have further testing.

Joel is walking with a cane and has pain, tingling, and numbness in his feel and legs. Extreme fatigue and insomnia are big issues. He has difficulty keeping a job due to the symptoms. With no medical insurance, he is not seeing a doctor and has not gotten a definite diagnosis yet.

~Gypsy

I'm so sorry to hear about your son's health problems, but by his not going back to the doctor for further testing, he might be wrong about his self-diagnosis. Although I agree his symptoms resemble MS; they could also have other causes. For instance, a stroke could cause severe headaches and weakness. Age 25 is young for an MS patient. Not unheard of, of course, but most MSers are dx'd between age 35 and 55. Is there MS in your family history? Is he an only child?

I feel for you with him so far away and you wanting to help him. I wish I had a better suggestion. He's 25. He's on his own. You can't help someone who doesn't want help, unfortunately.

Best of luck,
Karen
msbluis

Hi.
 

Hi...I'm Maura. For the last 5+ years I have had several surgeries (to "fix") the numbness/tingling in my hand/arm. I was diagnosed with Thoracic Outlet Syndrome and had a rib resection/scalenectomy in Boston at Mass. General.

Well, long story short, since January (TOS), I have gone downhill. Extreme fatigue, numbness/tingling/burning has spread to my feet and my other hand. Pain in joints, legs, arms...and so I went to my pcp. Ran a bazillion tests (neg-same as they've been for years), and she referred me to a neurologist/rhuem.

Several mri's later, they have found several lesions, which prompted an LP. That showed many of the O bands. All of this combined with several other symptoms has led me to a larger neuro practice. Again, many tests over the last few months...finally getting somewhere. Oh, Rhuem diagnosed me with Fibromyalgia and Miofacial syndrome.

Neuro is saying probably RRMS, however wants a thoracic mri. Also wants testing done to see why I have had bladder issues since I was in my 20's.

I'm a mama to two awesome kids (17,13) and happy wife of 23 years now. I taught Elementary School for over 22 years, and was a principal until December. Unfortunately, after the surgery in January, I had to leave my position. No, I'm not really upset about that part anymore, I just want this long road to show some kind of answers.

I'm hopeful as the mri's/lp showed something at least. Meds changed slightly, but as they have often spoken to me about ms, I'm thinking that's most likely going to be my life going forward.

Well now, not my LIFE, but you know what I mean. Sorry for my lengthy post...it was actually a bit cathartic getting it all out, looking at those words.

Looking forward to meeting you all! Thank you for any and all advice!

Blessings,
Maura

Welcome to NeuroTalk, Maura. :)

Sorry for the reason you're here but you'll find a lot of support and friendship here.

Hope to see you often around the forum. :hug:

Welcome Maura, happy to have you here.
Please, join right in..:hug:

hello
 

Glad to have stumbled onto this sight. I am undiagnosed at this point. My symptom is muscle weakness in both arms and legs. I was hospitalized at Thanksgiving, given if steroids for 3 days which got me back on my feet but never back to 'normal' then after a tooth was pulled and I had an infection, the oral prednisone was not enough, so back to hospital in March for 5 day plasmapheresis. That worked great! Downfall was it only made me strong for about 6 weeks, now I am back to being weak.. Chairs and stairs are my biggest issue but walking any distance can be a challenge as well.

When all this started I did get referred to neurosurgeon for cervical spinal stenosis but was told I was not a surgical candidate. Now still undiagnosed my Neuro has called me an enigma. He is sending me for 2 nd surgical opinion. My PCP selected another neurologist through Rush University Chicago, trouble is 1st avail appointment is taking one month to see any dr in the group. I am holding out hope for possible different diagnosis, if treatable.

MRI done twice shows legions but they are non-descript and do not light up with contrast. Lab messed up spinal tap test, only tested for 2 of 3 tests for ms. Had the spinal headache even when following instruction to avoid.
Anyone else have muscle weakness as only symptom?

Hello tkw, nice to meet you.:) I presume you suspect that MS may be the culprit,
in your case? Muscle weakness can be a symptom of MS, as well as many other
causes. It sometimes can take many tests and months for a MS DX. There is
no "one" definitive test for MS, so the tests are usually to eliminate other
diseases as the cause.

Much luck in your DX journey. Keep a symptom journal, to help your Neuro
in his search, as well. We are here for you.:hug:

Howdies
 

I'm new to this site, my mom's been after me to find a support group for a while, I can get a wee bit (psychotically, suicidally, homicidally:p) depressed on occasion, generally when the doctors are scratching their heads telling me "hmmm, that ain't right...uhh...dunno." Or when the body goes into civil war mode with muscle fight muscle while I'm stuck begging it "can't we all just get along" it's tempting to just drop the bomb on them sometimes. Or when I'm asked for the umpteenth time "how are you feeling today?" And "is there anything I can do?" I don't have a definite diagnosis of ms but greatly suspected, reading through some of the posts I can really see why, I'm noticing a quirky humor very similar to my own here. One of the reasons why I resisted any kind of "chat" was I just can't deal with nothing but depressing posts without a shred of a sense of humor, like many of the other support groups for different disorders. So I guess if you get your doctor laughing with you through an exam it must be ms:wink: but I'll have an answer hopefully in august :D

Doc talk
 

-------------------------------------------------------------------------
Hi Starz! Welcome. I'm sort of new to this group but I've had MS for 20 years, since I was 40. Yep, you're right I'm 60. ;)

Everything you write about is so true. It does seem docs must take a required course in common, generic greetings to patients.

I remember several years ago my regular annual neuro appointment was coming up and I thought I'd try to come up with a descriptive, original answer - ahead of time - to my doc's routine inquiry as to how I was doing.

So when he asked, I told him that I felt like my entire body was like a sieve (colander) and it was constantly losing its physical abilities through the holes. I was pretty pleased with myself for such a creative and visual expression of how I felt about my many physical losses.

What I meant was the my loss of all bladder control, my loss of balance, of intimacy, of privacy, strength, the complete use of both legs, the use of both arms, the loss of use of 1 1/2 hands, all loss of dexterity - basically everything below my neck.

His response to me was, "Can you just tell me without the use of the
imaginative description?"

Even though he'd been my neuro for years, I realized that day I was just a source of paycheck for him and I'd wasted my time trying to describe how I felt. Lesson learned. Good neuro, not a great people-person.

MsBluIs

Main symptom
 

TKX, you asked:
"Anyone else have muscle weakness as only symptom?"

Just like Sally said, muscle weakness can be caused by SO many illnesses, you can't really determine anything until you've gone through weeks, months, sometimes even years of watching, waiting and testing.

In the beginning and for about a year my first symptoms were what you might describe as weakness, but I thought of it more as leg tiredness and heaviness. In the beginning my legs would feel like I'd run a marathon even though I'd only walked a block, or when I had gone grocery shopping.

I'd soon have to manually lift one leg, than after a few months, both legs to sit in my car or climb a stair.

Luckily after a few minutes' rest I'd be able to go again without the foot-drop or my legs feeling so heavy. I'd say I would have to sit and rest after at most, 20 minutes of leg use.

But a doctor must order many tests to rule out other possible causes since there's no one test that can confirm MS.

You didn't say if your MRI reflecting lesions was that of the brain, cervical column or thoractic spine, but it can take all three to help diagnose or rule out MS. And unfortunately, lesions can be evident but have no effect on your abilty to function. That's why blood tests, LP's and tests like Evoked Potentials are done, to rule out other diseases.

We wish you luck and we're here for you to talk to and ask questions.

My name is Monica.
Hi everyone I've been following some of these post and find that this might be good for me. For years I have not made any of my medical issues a point to come before anything else. There for I never made time to talk or think much of them... Last year I pushed myself and since January I haven't worked been in the hospital 4 times already. Seems that I get so cold and my legs lock in pain that in unbareable. I have always thought there could be a nerve issue like MS. I feel numbness in my head, lips, touge, finger tips and hands. depression meds help with that. But my legs is not something I can igonre. I've had test done and so far PN mix of senory motor peria something.... In the end I think that I will be living with a life time of MS. I'm on pain meds and gabpentin... I'm thinking there is got to be some other way to deal with my self, I thinking that after awhile nothing will help but a wheel chair....

Hello M&M Angel and welcome to NeuroTalk.

Do you mean you are diagnosed with Sensorimotor polyneuropathy?

http://www.nlm.nih.gov/medlineplus/e...cle/000750.htm

If this is the case this would not mean MS. MS is a disease of the Central Nervous System (Brain, spinal cord, optic nerves). PN happens outside the Central Nervous System(CNS).

Information about Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/p...neuropathy.htm

You may want to talk to those in the PN forum
The PN forum:
http://neurotalk.psychcentral.com/forum20.html

There is a diagnostic criteria for Multiple Sclerosis -- The McDonald Criteria:
http://emedicine.medscape.com/articl...up#aw2aab6b5b2

Best wishes.

Welcome to NeuroTalk, M&M Angel.:)

And thank you Snoopy..:Tip-Hat:

I am 39 and recently diagnosed with ms. All the mri's, blood work, and spinal tap are done. My next neurologist appointment is next Wednesday, but I was called today by her telling me it is ms, and the dye test done during my mri shows it's not active. I don't understand this because each day I seem to be getting worse with pain and mobility. I haven't been truly educated on the subject as I refused to think it was ms until my diagnosis. Right now I'm mad and don't know what to do or say. I feel like I'm in life's solitary confinement. Oh, and the icing on my cake was being asked if I needed a wheelchair at a store yesterday.

Hello amberlenee and welcome to NeuroTalk.

For a better understanding of MS you might look through the National Multiple Sclerosis Society website. You will find a wealth of information about the disease, symptoms, prognosis, treatment and more.

http://www.nationalmssociety.org/

The Dye used with the MRI will light up anything currently active. Unfortunately, active vs non-active lesions does not mean you will or will not be doing better. MRIs do not necessarily correlate to how a person with MS is doing, sometimes it does.

Having lesions (anomaly on MRI) that is consistent with MS means damage has already been done to the Central Nervous System (brain, spinal cord, optic nerves).

In MS it is common for a person to deal with residual symptoms or symptoms that come and go. Learning to live with MS means learning to live with symptoms :(

There are medications that can help with some symptoms, as well as treatment that can be used to hopefully slow the disease progression. Please speak with your Neurologist about the best way to treat your disease and symptoms.

Mobility is a little different. Your Neurologist can send you to a Physical Therapist to possibly help improve your mobility. Unfortunately, mobility problems can be difficult and frustrating.

Improving mobility, if possible, take a lot of dedication and hard work on your part. Physical Therapy, exercise, stretching are all of what you will need to do to try and maintain your mobility.

The most important thing is to be safe. That may mean the use of mobility aids (cane, fore arm crutches, walker, trekking poles, wheelchair, scooter).

Hi Amber, welcome home to NeuroTalk.:hug:
I really can't add anything to Snoop's super, helpful post, but wanted to
let you know that you are in the right place for support and friendship.

I hope you and your Doc can work out a plan of the most helpful meds
and PT, to help you cope with this nasty disease and to live your life to the
best of your ability.

I hope you'll stay and keep us informed of how things are going for you.
And for our support and company. We need your support as well.:grouphug:

New, Not Yet Diagnosed
 

Hi Everyone!

My name is Brenda. I guess my journey with all my neurological issues started a long time ago. I often feel like I am losing my mind. My neurologist suspects MS. My brain MRI is definitely positive (brain MRI from 2007 had 2 white spots) brain MRI from March 2014 now has "lots" of white spots. All of the other tests my neurologist has ordered have been normal. LP was done on June 3 and I follow up on July 24. I can access the results online and most everything looks normal. Now, I am beginning to wonder if I am losing my mind.

New Member to club I probably became a member of today
 

Hope there is no offense to my title. This has been quite the journey and quite frankly I am weary. Today my appointment with an ms specialist said mri of brain looks like MS. Will have to complete evoked potentials, spinal tap and mri of thoracic spine for final diagnosis-or off to some other specialist I'm sure-if things get more confusing. I have a weird situation that I just go from one specialist to another and noone looks at the whole picture. When I ask them to read my log of events, they want me to embellish and then before I know it they are overwhelmed with the complexity and never hear to entire story. I am a nurse and have made documents, spreadsheets, copies of all records but it seems that everyone has their specialty that they focus on and lose site of the entire situation. There really is something wrong in our healthcare system. I started out about 2 years ago with burning soles of feet, swelling/pain/limping of each foot at different times with mri showing contusion. No injury that caused the situation. 11/13 after walking on the swollen/painful right foot, ruptured right peroneal tendon. Tendon repaired surgically 12/13. Intense right lower lateral leg pain with numbess along with increasing numbness of right foot. Sent for spinal mri 1/14-mildly herniated L4, L5, S1, S2. Leg pain then attributed to back and underwent 3 spinal epidurals for leg pain (never had back pain). Between 2nd/3rd epidural, big toe became totally numb and cannot extend toe. Nerve conduction studies show axonal and demyelinating features. Sent to 2 different neurologist and 2 neurosurgeons who say spinal nerves not compressed no surgery needed. Neurologist took their good old time and did basically no real work-up. There is more but I will get to the point. In June when I realized things are worse, I have more difficulty walking because right foot is not working and right lateral leg pain really bad and now I can no longer work but have basically not worked since 12/13, I got myself to Cornell to a peripheral neuropathy specialist. His diagnosis was small fiber neuropathy related to neurotoxic medications-cipro, macrodantin and statins with no treatment options. I also had a carnitine deficiency and was started on supplements. Diagnosis #3 was sciatic neuropathy of the right:confused: peroneal branch probably related to popliteal block done to repair tendon rupture with no treatment options. Went to new Internist who orders brain/cerbival mri about 2 weeks ago who showed numerous brain lesions along with evidence of demyelination with same type of findings in the cervical area. Do I think I have quinolone toxicity-i am pretty sure-can trace symptoms back to 2 months after taking. Again, no treatment for this in Western medicine. I am going to start glutathione infusions with an alternative doctor next week. I have an appointment at John Hopkins to get the probably damaged peroneal nerve evaluated and after reviewing my records, gave me an appointment writing "good case" and give her an appointment. If I wasn't in so much pain from the right leg and could walk acceptably, I would just give up. Any thoughts on my case would be appreciated. Sorry we are all in this club. I realize there are worse clubs to qualify for and I am grateful for the blessings I have. But, I am weary and tired. I know, I know, that is an ms symptom lol.

New Member to club I probably became a member of today
 

Reposted per suggestion to aid in reader visibility. Hope this helps.

Hope there is no offense to my title. This has been quite the journey and quite frankly I am weary. Today my appointment with an ms specialist said mri of brain looks like MS. Will have to complete evoked potentials, spinal tap and mri of thoracic spine for final diagnosis-or off to some other specialist I'm sure-if things get more confusing.

I have a weird situation that I just go from one specialist to another and noone looks at the whole picture. When I ask them to read my log of events, they want me to embellish and then before I know it they are overwhelmed with the complexity and never hear to entire story. I am a nurse and have made documents, spreadsheets, copies of all records but it seems that everyone has their specialty that they focus on and lose site of the entire situation. There really is something wrong in our healthcare system.

I started out about 2 years ago with burning soles of feet, swelling/pain/limping of each foot at different times with mri showing contusion. No injury that caused the situation. 11/13 after walking on the swollen/painful right foot, ruptured right peroneal tendon. Tendon repaired surgically 12/13. Intense right lower lateral leg pain with numbess along with increasing numbness of right foot. Sent for spinal mri 1/14-mildly herniated L4, L5, S1, S2. Leg pain then attributed to back and underwent 3 spinal epidurals for leg pain (never had back pain). Between 2nd/3rd epidural, big toe became totally numb and cannot extend toe.

Nerve conduction studies show axonal and demyelinating features. Sent to 2 different neurologist and 2 neurosurgeons who say spinal nerves not compressed no surgery needed. Neurologist took their good old time and did basically no real work-up. There is more but I will get to the point.

In June when I realized things were worse, I have more difficulty walking because right foot is not working and right lateral leg pain really bad and now I can no longer work but have basically not worked since 12/13, I got myself to Cornell to a peripheral neuropathy specialist. His diagnosis was small fiber neuropathy related to neurotoxic medications-cipro, macrodantin and statins with no treatment options. I also had a carnitine deficiency and was started on supplements. Diagnosis #3 was sciatic neuropathy of the right peroneal branch probably related to popliteal block done to repair tendon rupture with no treatment options.

Went to new Internist who orders brain/cerbical mri about 2 weeks ago who showed numerous brain lesions along with evidence of demyelination with same type of findings in the cervical area.

Do I think I have quinolone toxicity-i am pretty sure-can trace symptoms back to 2 months after taking. Again, no treatment for this in Western medicine. I am going to start glutathione infusions with an alternative doctor next week.

I have an appointment at John Hopkins to get the probably damaged peroneal nerve evaluated and after reviewing my records, gave me an appointment writing "good case" and give her an appointment.

If I wasn't in so much pain from the right leg and could walk acceptably, I would just give up. Any thoughts on my case would be appreciated. Sorry we are all in this club. I realize there are worse clubs to qualify for and I am grateful for the blessings I have. But, I am weary and tired. I know, I know, that is an ms symptom lol.

First let me say we have not lost our minds. I feel the same way too. Also in the process of diagnosis. My question to you is how bad the lumbar puncture was. Had one as a child 50 years ago and I know things probably are different now. Remember screaming my head off. Mine is scheduled for tomorrow and I am so scared. How bad was it? Just your honest opinion. I know everyone's experience is always different. Thanks and my heart goes out to you.

The LP was not bad. It was x-ray guided and was relatively easy. I only had mild head pain the next day that was relieved with laying back down. (I suffer migraines daily anyway). I wish you the best of luck.

I had my follow-up today and it got even more confusing and I have been referred to a MS specialist for a second opinion.

I hate it when medical issues become confusing :(

Good luck with your second opinion appointment.

Cervical spinal stenosis dignosis
 

Hi, I was just diagnosed with cervical spinal stenosis. I'm 60 year old male with no history of back pain and started having what felt like a normal crick in my neck that usually goes away. After 7 days of no improvement, I went to an orthpaedist who had an MRI done. The notation reads:
"C5-C6 Disc space narrowing central paracentral shallow broad disc osteophyte. High grade bilateral foraminal stenosis with uncinate hypertrophy. The midline cord signal abnormality is visible here with a somewhat defined margins possibly myelomalacia rather than edema. Subarachnoid space is effaced with mild stenosis.
C6-C7 Narrowed disc with shallow broad disc osteophyte right asymmetric. Subarachnoid space is effeced at and just above the disc space. Foraminal stenosis with uncinate hypertrophy is high grade right and moderate left."

Other areas were commented on as well but nothing as serious. My symptoms include pain in upper right side of my back and minor occasional tremors/spasms from back, chest and arms. What really alarmed me though was significant strength loss in my right tricep. I can usually do 20 push-ups no problem but could barely do 3 to 5 this AM. Right bicep is ok. Anybody out there with a similar experience that has any advice as how to proceed? I had a massage yesterday(did nothing) and seeing a chiropractor today. Then seeing a spinal neck specialist on Monday.
Thanks in advance!
John

Hello John
I have copied your post to our Spinal Forum as this is the Multiple Sclerosis forum that you have posted on

Here is the link to your thread on the Spinal forum so you can check for replies
http://neurotalk.psychcentral.com/sh...d.php?t=207325