scared and frustrated but hopeful

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New Member

Date Joined Nov 2014
Total Posts : 1
   Posted 11/3/2014 12:48 AM (GMT -6)   
Hi all. I'm 41 years old and currently being followed by a neurologist. A little history: have had endometriosis dx at age 18, hypothyroid due to radioactive iodine uptake from hashimoto's thyroidits and graves. My PCP has long suspected I had Lupus, but my blood work always tested normal for that..except this spring and I was referred to rheumatologist, who said I did not have Lupus. For the last 3 years I have has numbness in my right arm, wrist and hand. I wore a brace for over a year, ruled out carpal tunnel, had a cyst removed, but still the same numbness. I have had episodes of stumbling, but never really thought much of it other than being clumsy. That is until my oldest daughter and I were at a college function and as we walked to the parking garage, I just fell straight down. I hurt my knee, but got up laughed it off. We got in the truck and I felt weird and told her to drive. We switched places and I buckled up, she backed out and next thing I knew she was pulling back in the spot. She said I looked as if I was having a seizure as she drove around the garage twice. I have no recollection, just woke up wondering what she was doing. She took me to the ER and they sent me home after CT scan was normal. My PCP sent me for EEG which came up abnormal with prolonged beta waves. They sent me for sleep deprived EEG which came back normal. Never saw neurologist at that point. The last year I have had memory loss and a hard time trying to find my words. I'm not talking about forgetting where I put my keys, but forgot my child at school because she had a field trip...even though I drove her to school that morning for it...when the school called me I had no idea what they were talking about. My husband and kids say I forget alot of recollection of conversations taking place. When I am trying to find my words , its like they just cant come out. I have tried to laugh it of, but it is getting more alarming for me. This last year I had started wetting the bed at night. I asked my PCP to see if I had a UTI. It was negative. That has started to happen more frequently as well as during the day. It is getting quite embarrassing. I have had a few episodes of not controling bowel as well. I told my PCP all of this progressing and extreme fatigue. I have started having like a black veil in my vision of my right eye at night...not all the time, but its alarming when it happens. I went to the neurologist and he did a very thourough exam. My reflexes on my left side her hyperreflexive while on my right not reflexive much at all. He told me point blank he feels I probably have MS and send me for MRI with and without contrast of my brain and cervical spine. He also tested me for Lyme disease and my B-12. My B-12 was low (184) so he started me on injections. My results for my MRI were normal and showed no lesions. He said that was encouraging and will see how I am in December on a follow up. He said he may want to do a spinal tap at that point. He also referred me to an opthamologist about my vision. He only noticed that one pupil was larger than the other, but my optic nerves looked great. He sent me to a retina specialist to see if there was a problem with blood flow to my retina. That was nirmal as well and that doctor felt my vison problems were neurological in nature. So now I am waiting to go back to the neurologist. I'm just very depressed about this, especially since I had an episode of bowel incontinence the other day in a friend of mine's car. She knows I have had some things going on, but didn't know the extent...until now. It was humiliat8ng and embarrassing, but she was a great friend about it. Its the not knowing what the heck is wrong! My husband is very supportive and concerned as well. I guess I just want to know, with all these symptoms, could I still have MS even with MRI normal? I am taking synthroid 225mcg, vitamin D 1000mg, B12 1000u a week, vivelle dot patch, and a multivitamin. I just feel I am too young for this. Please give me your thoughts. Thank you

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 11/5/2014 6:23 PM (GMT -6)   
Hi there,

You have some tremendous issues here! You have every reason for being depressed and scared! Your symptoms are awful! It sounds like you have the doctors looking. Keep asking. Keep insisting on aggressive diagnostics.

You can still have MS without lesions on an MRI. It's very rare. Most doctors will not diagnose until those pesky lesions show up. Sometimes it takes a while for lesions to show up.

Please do me a favor, when you post here, break up your post into small paragraphs. I have vision issues and long blocks of text are very difficult to read.

I hope you find relief soon! Please keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

New Member

Date Joined Nov 2014
Total Posts : 5
   Posted 11/11/2014 11:16 PM (GMT -6)   
Sorry about your issues and I know when you are having so many things going on it is worrisome. You have every right to be getting depressed and I was in your boat a while back all before 2002 when I was diagnosed with M.S.. I agree with the previous member. But I have heard of someone being diagnosed with M.S. Without lesions although it is extremely rare. But with symptoms and a spinal tap they can diagnose it. Although if you are having active issues you should have some lesions or plaque on the brain or upper spine. I would recommend getting the spinal tap as miserable as it sounds to have peace of mind on what you may have and if issues continue get another MRI six months after the last one. The reason I would lean in the direction of MS is because everything you stated I have gone through with the exception of Nuritus or vision problems which is highly likely with MS though. My memory is the thing that scares me the most. I drove an hour to a doctors appointment and when I got about 2 miles from the doctors office I had no idea of why I was where I was at or recollection of the drive there, only to go all the way home and get a call from them saying I missed my appointment. Along with a ton of other episodes like that with not remembering what was said to me three minutes later and other things. I have no feeling in my right arm and hand and I drop things constantly and walk like I'm drunk when I do try and walk. Keep going back for testing and maybe a second doctors opinion if possible. Good luck.

Veteran Member

Date Joined Sep 2014
Total Posts : 534
   Posted 11/12/2014 9:30 AM (GMT -6)   
You mentioned taking 1000 mg of vitamin D. Have you ever had your vitamin D level checked? I had to take 5000 IU to get my level up to 72 ng/ml. The proper level given to me by the VA was 30 ng/ml - 90 ng/ml. Many with MS believe you should be at the higher end of the range. Most people today are deficient in vitamin D because we do not spend much time in the sun. You cannot get enough vitamin D from your diet. I was eating salmon and taking cod liver oil and was still deficient (19 ng/ml). My thoughts are the body can heal itself if we give it what it needs. There are diets which have been developed to treat MS. This is something you can do while waiting for the diagnoses. We all have a doctor inside us called the immune system. It needs the vitamins and minerals found in food to repair our bodies and get rid of the toxins. I did a lot of juicing when I was sick. This allows you to get more vitamins and minerals in your body. Try eating mostly raw fruits and vegetables which will give you the most vitamins and minerals. Stay away from the dairy, gluten and sugar which can be a problem for people with MS. Four things which should help you is proper diet, proper sleep, proper exercise and prayer and meditation. Here is a link which explains vitamin D.
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