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Old 07-23-2005, 05:33 AM   #1
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tiarah HB User
so confused

Can anybody tell me what I can do about this. RIght now I am feeling as if my whole body is a weight. I try to explain to my husband that my body hurts, I'm exhausted. I had to lie down last night because I felt like I couldn't hold myself up anymore. Is this a sign of MS also? After laying down for a bit and then I get up it's hard to walk. I can walk but it's hard, I feel like someone beat me up. Then I have to walk downstairs. I don't feel like I'm going to fall at all but I do have to hold on as i just feel so "heavy". Does anyone also have light flashes out of their peripheral vision. It's just my right eye. I don't go to the neurologist until August 4. I'm so afraid that they are going to say it's nothing. My MRI with and w/out contrast did show "small white matter changes and demyelination". What is the "small white matter changes"? It didn't say anything about lesions. I'm so tired. I've been tired for years now. My doctor had been treating me for hypothyroidism, although my TSH was normal she said I was showing signs of hypothyroidism. At first I thought the medication was helping but now it's not. THere are times where I feel good and can go and walk the track at teh school and lately, forget about it. I have a hard time just walking up and down stairs. My sister in law is 10 years older than me and she said the other day (I'm 38) "I'm going to be 50 and you act older than I am". It's true. For years I've been telling my husband that I want to sell the house because at 65 I can't see myself walking up adn down the stairs. I knew my body just wasn't feeling right but never had an idea of MS. I just don't feel well, I'm tired, I want to cry. I know everyone else out there has their own issues they are dealing with and I'm sorry. I am just scared right now and need some advice. No one around me understands what is going on with me so its hard to talk to them. THey are supportive but they just don't understand. My husband is wonderful but I know he doesn't understand and I feel so bad complaining all the time so I just try to keep most of it inside or talk to my girlfriend, who is wonderful, but I think doesn't understand either. Thanks for listening.

 
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Old 07-23-2005, 08:34 AM   #2
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Re: so confused

I'm having a real problem with my vision right now, so please forgive misspelling, etc. I'm so sorry you're having these problems. Extreme fatigue is one of those "hidden" evils of MS. How long ago was your MRI? I was "diagnosed" 12 years ago and have had little to practically no problems until this month. My Neuro back then wouldn't call it MS....called it demyelnating disease. Said he couldn't call it MS til I had more problems. Well, I had more problems, but went to a local doc who treats lots of ms patients. He gave me steroid dose pack which pulled me out of my leg drag and vision problems. I'm seeing a new Neuro. this time. She ordered very lengthy MRI which just finished up yesterday. I, like you, even tho I know this is ms, am very scared. My husband and kids are having to deal with a Mom who can't see without closing or patching one eye, and bumping into everything all day long. It's hard,,,,,very hard, and I do understand. I don't know what your beliefs are, but reading the Bible (hard to read tho and can't read very long) is very comforting to me right now. P.S. I have to start taking weekly injections as soon as a nurse comes to my house to show me how Good luck to you and hope you find something out at your appt. Are you in a city or small town?

 
Old 07-23-2005, 08:46 AM   #3
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Re: so confused

Hi, thanks for the info. I'm sorry that you're going through this also. I am in New York and am seeing a neuro in Albany, supposedly one who specializes in MS so I'm hoping for the best. I had my MRI about 3 weeks ago. I was diagnosed with optic neuritis about 8 years ago and was never told that optic neuritis is the first signs of MS. I have been dealing with different things off and on over the past 8 years with fatigue, dizziness, numbness and tingling but I have always been able to "diagose" myself and give myself reasons for these things happening to me. I never bothered to go to a doctor about it because I was able to "self diagnose". For the past 5 years I have been having this horrible ear pressure in my right ear that I have tried every sinus allergy medication, prescription and over the counter adn nothing worked. I went to an ENT who suggested the MRI to see if there was something blocking my ear canal and low and behold, the MRI results. Now that these results come in I can try to put all my symptoms onto MS as it all makes sense now. I haven't been diagnosed but have all the symptoms. I had forgotten about the optic neuritis until just recently when I was researching MS and it says that it's one of the beginning signs. Then it dawned on me that I had been diagnosed with that. I called the ophthalmologist who I saw then and asked when it was that I was diagnosed and they said in '97. I'm scared though. I'm afraid that I won't be diagnosed with something and that they will think it's all in my head when I know in fact its not. I have read so many of these threads where people have said that the doctors say it is "anxiety". I know mine is real and I'm afraid that that will happen but the MRI's don't lie right? What other diseases are there when you say demyelinating diseases? Is there something else this could be? My cousin was diagosed 6 years ago with MS, do you think it's hereditary? I'm also afraid of injections, absolutely terrified. Are there pills for MS?

Last edited by tiarah; 07-23-2005 at 08:48 AM.

 
Old 07-23-2005, 09:58 AM   #4
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Re: so confused

From what I understand, the only pill out is on trial basis only. I read one thread where someone was going to start the trial in a few months. Right now, besides steroids, there are only the ABC drugs that are all injections(these drugs don't help with symptoms, they only help lenthen the time between relapses) I have two friends from work that take Avonex, which is the one that I'm supposed to start on. They have done pretty well and said the side effects lessened for them a few months after starting. One friend has been on it for 8 years and decided to take a "break" for a couple of months. She regrets it because the side effects started all over again once she started back taking the shots.....so she warned me not to stop once I start them. As far as other demylenating diseases, I'm not sure and he didn't say, but there's sooooo many autoimmune diseases out there it's not even funnty. There's also so much they still don't understand about ms and the other diseases. DO NOT LET THEM TELL YOU IT'S IN YOUR HEAD! If they do, go to another doc!!! Also, the friend from work that has been taking Avonex for 8 years, has a younger sister with severe ms. I never heard is was hereditary, but am beginning to wonder. When my daughter learned of my ms(didn't tell any of my kids till last month when this all started), she asked me if she could get it. Talk about a hard ??? Good luck and I'll say a prayer for you. By the way, I'm way down here in Texas....HOT!

 
Old 07-23-2005, 11:38 AM   #5
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tiarah HB User
Re: so confused

I haven't told really anyone in my family yet as I am not sure of a diagnosis. My sister knows because she works for a doctor and by accident my MRI results ended up on her desk. THey went to the wrong doctor's office. My doctor and teh doctor she works for both are in teh same building and have the same last name. How ironic is that. My husband also knows. I don't want to tell anyone else, my other 2 sister or my parents until I have a definite idea on what is going on. Why worry so many other people when I might not have anything. Although, I don't know, perhaps I am thinking that maybe they will say it's nothing but that would be a clean MRI right, not what mine said. Who knows. I was in the shower this morning and I broke down and started crying. I feel like nobody can help me right now, not my husband or my sister and I don't want to act so helpless either as it may not be anything. I feel like I am getting depressed over this whole thing and I feel as if I can cry at the drop of a hat. Is that normal? Shouldn't an MRI say "lesions" if it's MS. Mine said "small white matter changes wtih demyelination". The ENT that read the report to me said that he has seen people come into his office before with scans like that and it was nothing. Now, I don't know if he was trying to make me feel better or if he is right. I just don't see anything with "demyelinating" in there as being nothing. Could I be wrong. Be honest with me, please. What do you think?

In Texas huh? I'm sure it's hot. Here in New York it's 82 and beautiful. Finally. We have had such nasty humidity and then rain it's horrible. I have never had my lawn mowed as much as I have this summer. My electric company is going to love me as I have my ACs on 24/7. Today though we finally have a break, thank God.

 
Old 07-23-2005, 02:05 PM   #6
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beachlover247 HB User
Re: so confused

I'm certainly not a doc, but I was just looking back at my MRI report from '93 and all it says (in a nutshell) is "findings most likely represent a demyelinating process" and that the areas were consistent with my vision disturbance. They listed a number of possiblilities with MS being listed first. It was later when I had more problems that they decided to call it MS

 
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