Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi Everyone,
I'm new here and this is the first time I'v gotten the nerve to say anything.
I found this site some months back and I can't tell you how much reading your posts has meant to me. I am so scared and I felt so alone until I read your posts. I'm just alittle shy but the fear is taking over and today the shyness lost and here I am.
I need some help, I'm so confused so afraid of permanent damage to my legs if my Neuro doesn't do something soon.
My doctor diagnosed me with MS and sent me to a Neuro, he also felt that my symtoms were MS related and did a bunch of blood work, and MRI's. All the blood work showed was boarderline Lupus which at the time he said it wasn't a factor and not to worry about it and the MRI's showed small white lesions on my brain which he said he would watch.
Since the first appt six months ago I have seen him three times and each time he says he feels it could be MS but lets wait and see. Then fri I had another MRI and he said the small lesions are still there but he wants to send me to a RA specialist and a Lupus specialist to rule those two diseases out. Now I'm really scared, I thought I was going to hear him say NO MS and we can fix whats wrong with your legs with steroids (they did help alittle with the bands and bending my ankles when I walked).
I have checked out the sites for both RA and Lupus and nowhere is there any mention of my symtoms. I'm so confused.
These are my symtoms: Early onset was losing balance alot and weakness in left leg and numbness. Pins and needles in my arms, hand, feet. Muscle spasms in feet so badly I couldn't drive a car. Blurry vision, eye pain (left only), Falling for no reason. Now, systoms are, Can't be in heat above 73degrees. Loose my legs, double vision, nausea, head starts bobbing, hands shake terribly bad, and whole body shakes. As soon as I cool down symtoms improve within an hour or two. Can't shower in warm water without loosing my left leg totally and weakens the right so much I have to use a shower seat. after shower it takes anywhere from two hours for my strength to come back or maybe not for the rest of the day. I have to use a walker, cane and now a wheelchair on a regular basis. Both legs shuffle when I walk now instead of just the left. My speech is getting worse, my words stick or don't come out at all, and some words I don't recognize as being in the english dictionary. Gotta stop for now vision is getting too blurry. Hope I haven't scared anyone off, I'm really a ssane person just very scared at what the lasting effects are going to be if they don't diagnose me and treat me soon.
Have a great day
Kath
I'm new here and this is the first time I'v gotten the nerve to say anything.
I found this site some months back and I can't tell you how much reading your posts has meant to me. I am so scared and I felt so alone until I read your posts. I'm just alittle shy but the fear is taking over and today the shyness lost and here I am.
I need some help, I'm so confused so afraid of permanent damage to my legs if my Neuro doesn't do something soon.
My doctor diagnosed me with MS and sent me to a Neuro, he also felt that my symtoms were MS related and did a bunch of blood work, and MRI's. All the blood work showed was boarderline Lupus which at the time he said it wasn't a factor and not to worry about it and the MRI's showed small white lesions on my brain which he said he would watch.
Since the first appt six months ago I have seen him three times and each time he says he feels it could be MS but lets wait and see. Then fri I had another MRI and he said the small lesions are still there but he wants to send me to a RA specialist and a Lupus specialist to rule those two diseases out. Now I'm really scared, I thought I was going to hear him say NO MS and we can fix whats wrong with your legs with steroids (they did help alittle with the bands and bending my ankles when I walked).
I have checked out the sites for both RA and Lupus and nowhere is there any mention of my symtoms. I'm so confused.
These are my symtoms: Early onset was losing balance alot and weakness in left leg and numbness. Pins and needles in my arms, hand, feet. Muscle spasms in feet so badly I couldn't drive a car. Blurry vision, eye pain (left only), Falling for no reason. Now, systoms are, Can't be in heat above 73degrees. Loose my legs, double vision, nausea, head starts bobbing, hands shake terribly bad, and whole body shakes. As soon as I cool down symtoms improve within an hour or two. Can't shower in warm water without loosing my left leg totally and weakens the right so much I have to use a shower seat. after shower it takes anywhere from two hours for my strength to come back or maybe not for the rest of the day. I have to use a walker, cane and now a wheelchair on a regular basis. Both legs shuffle when I walk now instead of just the left. My speech is getting worse, my words stick or don't come out at all, and some words I don't recognize as being in the english dictionary. Gotta stop for now vision is getting too blurry. Hope I haven't scared anyone off, I'm really a ssane person just very scared at what the lasting effects are going to be if they don't diagnose me and treat me soon.
Have a great day
Kath
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A lot of your symptoms sound like MS, actually all of them could be. But I'm not a doctor and don't want to say "you have MS." There are tests that can help with determing if you have MS. MRIs use magnetic waves to produce images of the brain and spinal cord. If MS is suspected, a special contrast material (gadolinium) injection is usually at the time of the scan, as it reacts to areas of inflammation and will "light up" when a lesion is active. This indicates that demyelination is occurring (MS). Spinal Tap looks for the presence of oligoclonal bands (an increased number of certain antibodies) -- an indicator of increased immune activity in the spinal fluid.
This test is positive in up to 90% of people with MS, but is not specific to MS; a positive result could indicate another disease or disorder. . However, lumbar puncture results can be useful for ruling out other things if there is still a question about diagnosis. Depending on results from the MRI, neurologic exam, symptom history, and the spinal tap your neuro should be able to determine your diagnoses.
With your symptoms I wouldn't want to "wait to see what happens." I ended up diagnosing myself through research on the internet and then took myself to a neuro. She confirmed it with a MRI of brain and spine, and a spinal tap. It took 6 years for a dx.
Sounds like to me you need to see an MS Neurologist and get started on some treatment. Hope this helps. Good luck!
I went through alot of the same stuff, I found out it was ms in may. Nice to have you here.
Ps stay away from the heat and stay cool. If it is ms rebif works for me.
1. Have you ever went into a HOT shower with a shower bench and someone at your house in case you need help? If you have, did your symptoms get worse then when you put on COLD water you got better? If this is the case there is a good chance it is MS. Tell your doctor about the results you had.
2. When you get out in the SUN even on a cold day do you feel worse, more symptoms, afterward? Do you ever get a red butterfly rash on your nose and cheeks?
See in MS heat brings out the symptoms, does not make the disease progress faster, and cold reduces symptoms. However in Lupus the SUNlight has a chemical reaction with your skin that makes the disease progress faster.
3. Is your neuro an MS specialist? I am not saying you have MS but a specialist could better diagnose you. Even if it is to rule out MS and move onto other testing that can get you a proper dx and treatment.
Best wishes,
EP
First of all I want to thank you all for your advise. I have a very good MS Specialist at the Cleveland Clinic. I have had a Spinal Tap and it was clear. My blood work was all ok except for the Lupus being boarderline. I have alot of small white lesions in my brain but they aren't specific for MS but can't be ruled out according to my neuro.
EPagin yes, that was one of the first symtoms was the shower. I would loose feeling in my left leg and it would jerk real hard at the knee joint then give out on me. Now, both legs will give out on me or feel like lead if I have my water too warm. I am so unstable standing in the shower I have to use a shower chair.
If I go outside in the heat I need to go straight to the car or I will get dizzy, nauseated, my body will shake and my legs drag and feel like I am wearing lead boots. This started only on the left leg and foot but now the right one is starting to do the same thing. The entrance to my apt has an incline and it is extremely hard to navigate going up or down that to get out or back into my apt. If its hot I drag up it and look totally rediculous to the neighbors, they must think I'm drunk. My ankles feel like someone is squeezing them and holding onto my pant legs when I get too warm. I also have tight bands around my ribs and waiste at times. The bands around the ribs have been so bad that I thought I was having a heart attack so I called the MS clinic and they said it was normal reaction to heat due to MS.
I trust my neuro I'm just thrown by the need to see a lupus specialist and RA specialist. I don't think these symtoms go with those two illnesses but please correct me if i'm wrong.
I hope and pray I don't have MS or lupus but I do hope they can help me save the use of my legs as soon as possible.
Thank you all so much for your advice. This means the world to me, and you are all always in my prayers.
Kath
I have heard it takes an average of 7 years to diagnose MS. There are so many symptons. EP made a good point; you need a neurologist who deals in MS. Check out services Natl MS Society offers. They have booklets and referrals that are helpful. Write down your experiences daily and take it to your dr. Some thing may seem unimportant may be very relevant. Come back to DS for support.
Hugs, AG
Keeping a journal of your symptoms is important and take them with you to the doctor. Be care taking a shower....I would recommend taking it when there is somebody at home with you. You certainly don't want to fall. When I am really weak and fatigued, I use baby wipes to take a quick bath to save energy and to keep myself safe.
Glad you found this site. Feel free to ask any question and also vent if you get frustrated. We are all in this together!!
Take care!
Wellcome to DS and I hope you can find answers to the things you are looking for.
Kathi I know the tests don't seem to make much sense, but because of how serious MS is it is the neuro's job to rule out every other disease first and that is why it takes so long to get a DX, I was tired of getting tested over and over for the same things but I sure would have picked something else over this. Remember the meds don't treat MS they just slow it down. On the other hand they have meds to treat a lot of the symptoms and that is what you should talk to your about, like gabepentin or Lyrica for the pins and needles because that is probally nerve pain. Just keep reading and read some more as I'm sure you will find what your looking for but if not just ask I'm sure someone will have an answer.
Good luck
I will go through as much testing as needed to find out whats happening to my body, feels like aliens have invaded and I have no control over my own space.
I do have a question oleblue, are you saying that if this turns out to be MS that nothing they do for me will bring my legs back? I can handle anything God hands me with alittle help from him, but I've always been so active and whatever this is has turned me into a stay at home type and that's been a bummer. Could be alot worse I know, and I don't need to whine about all this, its just scarey and I don't want to keep using canes, walkers, and a wheelchair. Maybe it's all just too new to me and thats why it's freaking me out so much.
I really do value all the advise here at DS and I feel badly for all of you here with this awful monster disease.
My God grant you all a pain free and COOL breezy day. I know I could use one lol.
kath
I'm glad you decided to talk to us! We're all here to do what we can to help each other out. That's what I love about this site.
Sometimes what we put into our bodies through our diets has more of an effect on us than we could even imagine. I'd say that while you're going through figuring out what's happening, treat yourself well. Try to eat as many whole foods as possible and stay away from any processed ones.
We can get a lot of different symptoms when something is "off" too so try not to jump to conclusions or start worrying. I know that's easy to say but this is all about you so take care of you.