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Motherly Advice from MS MOMS

I think it's MS and they won't listen.
They think it's MS, what do I do now?
Could it be MS?

MRI shows nothing.
MRI Follow-up.

I think it's MS and they won't listen.
Question: Hi, my name is Bonnie and I have been having symptoms of numbness in foot and leg, cold foot. I had a hysterectomy on March 30th of 2000 and have never recovered, my abdominal area is very tender and I have extreme bad. pain, part of that was a partial blockage that occurred for what reason I don't know. I have joint pain in my hands, my hips, my toes so bad I can barely get out of the bed in the morning.

I could not get any of my Doctors to listen to me they all thought I was making up my symptoms to get out of work or maybe they think I'm crazy. I also have graves disease.

Since the hysterectomy my doctor has done two other surgeries a laparoscopy and a laparotomy for extreme adhesions, that was done on Aug. 30th, by December I still had abdominal pain and numb left foot join pain and fatigue, well he said I am releasing you back to work and your as good as your going to get, better than when you came to me. I simply could not go back to work with the pain in my bad. that's when the GI doctor found the partial blockage, then they wanted to do another laparoscopy, I said look there is something going on with my body, I went to the ER out of my area, that's when I demanded that someone do a test for MS, Lupus and RA, I get results on Monday, I just know there is something, I have every symptom, and a gut feeling.

I'm so scared.

RESPONSES:
STACY: I went through somewhat of what you are going through in that I knew something was wrong for a long time but other that being extremely tired I seemed healthy to my doctors. I did have a bout of numbness in my arm which my doctor attributed to me sleeping on it wrong even though the numbness lasted about three months. But I knew that a thirty year old woman should not be as tired as I was. When I woke up one morning with numbness in my face and hand that got progressively worse through the day I went to the ER. I was admitted to the hospital and during the time they were trying to diagnose me I found that not knowing is worse than knowing and that there are a lot of things that I could have been diagnosed with that were worse than MS.

Please know that while MS is an awful disease there are a lot of medicines to day to help stop the progression of the disease and to help you deal with the symptoms. The worst thing to do would be to keep going and not know.

No matter what do not get depressed, focus on the positive. MS won't kill you, you will have to adjust your life but you can still enjoy all that you have.

One other thing that you may find helpful is the comfort and peace of mind that you can receive from God. The most helpful thing for me has been my relationship with God and my church.

If you are scared and need someone to talk to email me at Stacylw@pacbell. net, just mention MS in the subject so I will know to go ahead and open the email.

I hope this helps some.

PAT: Dear Bonnie: I have had MS plus related and non-related problems since I was 17 now am 55. It is not the end of the world. You need someone to listen to you and not shut you out. I don't know where you are located in the world but I have a terrific neurologist in NYC. He works 7 days a week and is always there night or day just to listen. It took a long time until I found him, but he is the best. After the exam he actually gives me a hug and a kiss on the cheek and wishes me the best and says to call whenever necessary. I do have a very supportive family. I have been married to the best man in the world for almost 32 marvelous years. I have a son 30, a married daughter 27 and a new first granddaughter 8 months old. Every day when I wake and am able to feel the floor a little, I pray that God will bless the day and help me get thru it. My MS has now hit my esophagus and voice box so we will see what happens next.

Just remember, MS is not a Death Kneel there are many MSers in the world and are growing by leaps and bounds unfortunately.

I can try with all my heart and soul to add you to my pray list and cry for your pain, if necessary! Please keep me informed. I really do care. God Bless and keep you.

MSDEB: Bonnie, it can be very frustrating when your doctor doesn't take the time to listen to you. It sounds like you're experiencing a lot of pain associated with MS. Unfortunately, many doctors don't believe there is pain with MS. I wrote an article recently on MS and Pain that may be helpful to you the next time you go to see your doctor. You can access it at the following URL: http://www.themestream.com/gspd_browse/browse/view_column.gsp?column_id=16207

It's always helpful to have something in hand to show the doctor and it certainly makes him realize you are educating yourself about the disease. I hope you'll let us know how your tests results turn out. Kind thoughts to you.

MARY: Dear Bonnie, Hello & welcome, I am so sorry you are having these problems. Have you been to a Neuro? That would be my first suggestion, maybe one who specializes in MS. I will be praying for you.

VIKKI: Hi Bonnie, Of course you're scared ! I'd be concerned if you were not. I was in the hospital going thru countless tests before my dx of MS in 1990. Every test kept coming back negative. My neurologist told me that they wanted me to do a psychological profile ( whatever it's called ).He said this was a common thing they did when someone had symptoms that they could not find an answer for. I was shocked ! He then said it was in my best interest to do the test. I submitted and took the silly thing. After I completed their "test" the psychologist told me that the results showed me perfectly normal except for 1 thing... I was a "old fashioned" woman. I was a stay at home mom and cleaned and cooked !I thought to myself good grief ! There are many of us "old fashioned" wives and mothers. If being old fashioned in my ways was not normal well... so be it. He just smiled. Anyway I'm sharing this with you and hope it will help you in some way. It about broke my heart to be questioned because all I wanted was to find out what was wrong with me and GO HOME! I've since learned this is fairly common in MS. MS can be difficult to dx. I think most of us have probably experienced it to some degree. You're not alone. I'm glad you have such courage to demand they test you for these things. That will benefit you greatly !! Keep the faith !

They think it's MS, what do I do now?
Dear MSMOMS, I am a 43 year old mother of two. I'm very active (I deliver part-time for UPS.) And I've been feeling like I'm going crazy. Over the past few years my body has been doing strange things that I've always attributed to being over sensitive (which I hope is indeed the truth.) Three days ago I was told by my doctor that I should be scheduled for an MRI in order to eliminate the possibility of MS. Aaah! Immediately I thought to myself that I'd rather have a terminal brain tumor. The symptoms I've been having are as follows: slight dizziness, extreme exhaustion in the afternoons, a creepy-crawly feeling in my skin that made me think I had a low grade fever, sometimes I would notice my right foot dragging slightly, occasionally a numb tingling feeling would go down my arms (I thought I was having a stroke but then the feeling would go away), at night I might get leg cramps, blah, blah blah. These things have happened off and on for years. One of my favorite quips is that from the time I gave birth my memory was shot. Most all of these things I have attributed to the stress of motherhood and demanding outside jobs, but now I don't know.

The MRI is in two weeks which will be a real emotional roller coaster for me. How soon after the MRI do I find out if I have this stuff? Is there always an injection of dye when they do this? Is the needle big? Where do I go from there? If I have MS, should I apply for SSI immediately or should I wait until I'm debilitated? I'm beginning to look at everything I feel as a symptom? Is this a normal reaction? I know I sound like a nut and maybe you'll be afraid to answer this, but I could really use some input from someone who's been there. Thank you for your patience.

Responses: 

Terri: Hi! My name is Terri and I'm 43 also. I was diagnosed with Ms a year ago last month. The symptoms you are having CAN be an indication of MS and I think it's a good idea for you to have an MRI done. I also thought had some weird things happening to my body for years, including the memory loss like you've been having. But then I was hit pretty hard one night when I was working. I'm a nurse and was doing some lifting. Had some numbness on one side of my body and started dragging my foot before the night was over. I thought too that I'd had a stroke. When I went to my doc she ordered an MRI which showed some lesions in my brain. Had some further tests to rule out other things but eventually was diagnosed with MS. It could be something else that's causing your problems but I think it's better to know what's going on so you can be treated. Try not to worry about the MRI though, and if your doctor will agree to an open one. it will be much easier on you. Some docs prefer a closed one but they can give you some meds ahead of time if you wish that will calm you down a little. I didn't have one done with dye. But if you do, I imagine that they'll start an iv and inject it there. I'm not positive though so don't hold me to that, lol. The needle won't be bad though..a pinch and then it will be over with. I know what you mean about being on a roller coaster but try to relax as much as is possible and read up on MS if you can. You won't necessarily have to go on disability..will depend on your job and what type of symptoms you are having. I personally had to a few different reasons but everyone is different. Please feel free to write me anytime if you have any more questions or just want to talk. Take care and hang in there. And please let me know how things turn out. Take care. Terri

MSDeb: Hello, My name is Deborah - I'm 44 and was diagnosed 6 years ago. I can certainly sympathize with your anxiety about the MRI. Try looking at it from this perspective - IF it is MS then you will know what's wrong and can take the next step to dealing with it. There are a number of options to pursue that are in your favor. But, let me back up to your original concern - the MRI. Yes, your doctor should be able to give you some results almost immediately. If you're worried about claustrophobia (which is my biggest problem) see if he can do an open MRI; if not, he should be able to prescribe something to help you relax. My first time I asked for Valium - No, let me re-phrase - I insisted on Valium. Even if they use dye its a painless IV and there are no after effects. Just helps to get a clearer picture. As for applying for disability - try not to make any life altering decisions during the throes of crisis. Take it one step at a time. Get through the diagnostic phase first, investigate your treatment options if needed, take some time to absorb all the information and see how you're feeling. Then make a decision about work, lifestyle, etc.

I wish you the best and want you to know you're in my prayers. If you would like to talk further feel free to e-mail me and do let us at msmoms.com know how you are doing. Take care, Deb

Cindi: Dear Friend, My goodness, I'll bet your mind is going a million miles a minute. I do know how incredibly intense this whole thing can be. The tests they want to do, the waiting, and then the ordering of more tests. I think the first thing I want to address is your comment regarding the filing for SSI or SSD, "should I wait until I'm debilitated". Val, there is no saying that you will be debilitated. I know it is a fear of ours, but it is not realized by the vast majority of us. Unfortunately, you'll probably ending up having to work for quite a while yet like most of us. The MRI is the easiest thing to do, the injection they give is with a small needle, it's used to enhance any lesions that would be new. It's best to get the one with the enhancement, as it can tell you the most information. The results from these may take from 4-7 days, depending on which day of the week you had it done, and how big the hospital is that is doing it. Some of the other testing they may do is some lab work, to more rule out things, such as anemia, a B-12 deficiency, lead levels, CBC, arthritis, lupus and Lyme disease. Usually you get them all done at once. Other testing may be a VERP, BAEP, possibly an EMG, or an LP. While a positive diagnosis of MS may be shocking at first, 90% of all of us with MS go on to live long productive lives. It isn't the end of the world, a few adjustments, some medications if necessary, certainly one of the ABC's without a doubt, it's your best defense against future attacks. No, you're definitely not nuts. I swear just about everyone I've ever talked to has said they've asked that question. It's not unusual to think that every little ache, pain, or funny feeling is due to MS. Some are due to our active imaginations, some to sensory problems, some to regular medical things that happen to any of us. For leg spasms, sensory problems, anxiety, depression, and so on, there are medications that are helpful. The best defense for you is to find out as much information as you can, call the NMSS at 1-800-FIGHT MS. They can send you any information you may want, along with checking out various web sites. (use caution on web sites that aren't from an official MS related company or organization) In the event you are dx. with MS, there are plenty of sites on the web, support groups in towns, and information available for you to work thought the initial phases of accepting this, and developing a plan to help you get on with your life. I'll keep you in my thoughts and prayers. Good Luck. Cindi

Could it be MS?
Question: I had 3 weeks of strange symptoms including extreme fatigue, numbness on my right side, blurred vision, clumsiness, weakness in my extremities, etc. An MRI of my brain was neg. I am scheduled to see the neurologist next week. My doc said the neuro is an MS specialist. She was very vague when I asked her if she had a dx for me. My PT said she doesn't like my balance and coordination. I have spent the last month researching and found this site. What does anyone think? Anyone have the same symptoms? They went away (besides numbness in my right hand) for a week and are slowly getting worse again this week.

Responses: All of the symptoms you list can be contributed to a number of different causes, MS being only one of them. Sounds like your doc started the ball rolling in the right direction by ordering the MRI and some PT for you to help resolve the problems you're having. I think it's an excellent idea that you'll be seeing a neurologist and while the one you're seeing is an MS Specialist may cause some alarm, thinking right off the bat that you "have MS" I again commend your family doc for arranging that. The thing about diagnosing MS is that it is as much of a ruling out of other diseases as it is a ruling in of the MS. No neurologist wants to give a patient a diagnosis that is going to affect the remainder of your life such as MS, unless they are positively sure. You'll undoubtedly hear more people complaining about having a dx. of "probable or rule out MS" or no diagnosis at all, irritated at the length of time it takes to become a firm diagnosis. Once you have that positive dx, it's difficult if not impossible to obtain health, disability and life insurance. (from personal experience, take this time to obtain what ever insurance you can now) Besides the MRI you've had, the neuro is likely to also order a lumbar puncture, evoked potentials, possibly and EMG, and lab work including tests for lead, Lyme disease, rheumatoid arthritis, Vit. B-12 levels among the list. Don't look at the negative results as a dead end, but as a positive that you don't have that particular disease. The docs want to be able to correlate the findings on the tests, to the symptoms you have, the response you have to the medications they may prescribe, and the "course" your particular symptoms follow. The actual diagnosis of MS takes much less time than it did even 15 years ago. Hang in there, try to be patient, keep a journal of how you're feeling, when a particular symptom may have started, what if anything helped it, made it worse, or if it cleared on it's own. Be sure to call your doctor if any new symptoms develop that last longer than 48 hours or right away if severe. Be sure to communicate openly with your doc so you can develop a good relationship. I know it can be frustrating and scary. Visit the MS sites on the web you feel comfortable with and seek support while you are going through this difficult time. Hope this has been somewhat helpful. Cindi

Wow, have I ever had all those symptoms. Let me just remind you that we have just come though the holiday season which is very stressful and very fatiguing (Is that a word?). That can play havoc on all of us with or without MS. Balance and coordination are something I struggle with constantly and if I am in a good mood I laugh to think that people must think that I am drunk!!!! After all, sometimes I look like it! I do experience numbness and am actually blind in my left eye. If I am really fatigued or stressed my right eye is very blurry. There are many tests to make an accurate MS diagnosis and Dr's are very leery of making a diagnosis until they have all the results in. I had 5 MRI's a CAT scan and 2 spinals and then they were sure. Holy smoke - what a journey! I know the tense and frightened feeling of waiting. I am so glad that you have an appt with an MS specialist. Those are difficult to find. Be your own best advocate. Keep researching, ask questions, come here to this site for support and remember you are not alone. Kookcow

Your symptoms could be indicative of so many things. The good news is your physician has referred you to someone who is an MS Specialist, so if it turns out to be MS you're already a step ahead. Have patience, let them the do the tests and stay positive. Come back and let us know how you're doing. Deb

MRI shows nothing.
Question:  I am still in the DX process, as I have A normal MRI result. I have many symptoms sensory, speech, misspeaking, off-balance, neuralgias, weakness and yet heaviness of limbs. My rheumy says face it, it may never be DX'D, my neuro says it's somatic (all in my feeble brain) My primary care says I am anxious, and the psychiatrist says it's ms but they are afraid to tell me. Well I already know what it is. They are the ones out to lunch. The only test they have done besides labs is the MRI-The labs did include Lyme testing. My ANA is pos and has been forever, but I do not have lupus. What if my MRI never shows anything? The Doc won't even see me till Feb. Help!

Cindi: Holy smokes, not being seen until Feb. Now that's a longer wait than I have with my neuro's office. Who is it that you are waiting to see? You didn't say, is it a "routine follow-up" with the neuro? One MRI, that doesn't really show anything, does not necessarily mean that you don't have MS, nor does it mean that you do. Many docs, need to follow you for "awhile", to evaluate your clinical symptoms, along with your test results. Having a positive ANA titer does not necessarily mean you have lupus, or arthritis, or Lyme. Having a negative Lyme titer does usually indicate no Lyme disease however. When evaluating for a dx. of MS, it's just as much a ruling out game, as it is to rule in. Many other diseases need to be looked for, and then crossed off the list of possibilities. Unfortunately, this is not a quick type of thing, and may take many months. If you are not experiencing any "new" symptoms, it may take even longer. It's interesting that your neuro says somatic, while the psych. says MS, it's usually the other way around. You may want to inquire to the physician you feel you have the best rapport with, when they might be able to repeat the MRI, and if they would consider doing any additional testing such as a BAER, VER, possibly an EMG, and even a spinal tap. Those are the usual diagnostic tests they run, before giving a positive diagnosis on anything. Sounds like your course has been very frustrating for you already, I wish I could add some words of encouragement. Try to hang in there, see the physician you're most comfortable with. If you feel it necessary, you could try to get copies of the MRI films, copies of your labs, and make an appointment with an MS specialist at an MS Center nearest to you. Hope you are able to find the answers you need.

Gwen: I think you should go back to the psychiatrist and ask him for a referral to another NEURO at least there is someone on your side. put it to all to the side and get another opinion for another NEURO take your test results with you. did your MRI have contrast? there is a newer machine called speck, it shows better than MRI'S. also a negative MRI does not mean you do not have MS.

MSDeb: It can be so frustrating not to be able to get answers - especially from so many different doctors. You didn't mention how long you've been experiencing symptoms or if this is an initial attack. If this is the first time you've had problems I would expect your neuro- ologist to be cautious. And, it's definitely within the realm of possibility that your MRI could be clear of lesions even though you're experiencing MS-like symptoms. Is your neuro. The doctor you are referring to that can't see you until Feb? Is this, by any chance, six months from the date of your MRI? If so, that's a reasonable amount of time to see if you have a re-occurrence. However, if he's told you it's "in your head" you need to pack up your insurance and find another doctor. That goes for your other physicians as well.

Unfortunately, with MS it can be a wait-and- see game to a certain extent. But don't wait too long. If you have MS it's important to have a physician whose familiar with drug therapy used to slowed the progression of the disease. Stay with it - push your doctors to search for answers and if they don't find one who will. You are your own best advocate! Best wishes to you, MSDeb

MRI Follow-up.
Question: This is a follow-up to MRI question. I have had symptoms for three years strongly, and on and off even before that. I kind of delayed my own DX by avoiding the Dr's altogether, I couldn't seem to get any PCP that would refer me, so I quit and suffered along in silence. I was referred to a rheumy ,who tried to fit me in a lupus or Behcets (rare DX) category for awhile. On a good note, I am having some cognitive testing on Monday. Can MS be primarily in your spine initially at least? The heat has made me much worse of course. Thanks for your responses.

MSDeb: 

I'm glad you brought up the point of MS on the spine. I think too often we forget to consider that possibility and focus only on the MRI scan of the brain. I'm certainly not a medical expert but my understanding is, yes, you can have lesions on the spine and have a clear brain scan. The lesions are directly correlated to the part/s of the body affected.

Kudos to you for taking a step forward with further evaluations. Keep pushing those doctors! - you are your own best advocate.

I strongly urge you to talk with your neuro. about the ABC drugs available to slow the progression of the disease. If you aren't familiar with drug therapy there are web sites available to educate you: http://www.mswatch.com is a great resource for drug therapy and offers chat rooms and discussion groups as well. Shared Solutions at 1-800-887-8100 is a resource in which you can speak directly to a nurse and she will provide you with information on drug therapy options.

Good luck to you - stay in touch and let me know how you're doing. MSDeb