Saturday, October 22, 2011 frustrated mema asks

Q: frustrated-are these symptoms of ms patients

really having a hard time getting answers.im having leg cramps in the muscles,severely painful,and a rubber band type sensation around my mid section like my bra is way to tight but its on the inside,feet bottoms feel as though they are brused first thing in morning and if i sit to long,eyes hurt and blurry..drs have done multiple tests and still no answers,,,i have high crp levels,high adolase levels and high factor 7 levels,brain leassions on mri of brain,head fog is terrable,pain sensation in arms,muscle weekness,cant sleep,mood swings up and down..this is getting worse and cant get answes..drs have susspected ms,lupas and im really asking if this is symptoms ms patients have .or test that were positive for you...Trying to do some reserch for myself to get some answers

- A
- A
- A

Answers (4)

Cathy, Health Guide

10/23/11 7:21pm

Frustrated mema,

I am so sorry you are having so many symptoms all at once and not getting the proper diagnoses. That is so difficult. Unfortunately many people with MS go for a period of time with no diagnoses.

I am not a medical person, but many of the symptoms you describe could be MS symptoms (I get "band-like" sensations around my middle just like you - I totally understand) - http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

I hope you have a reliable neurologist that you have been working with. If not, perhaps you can find an MS Center near you and make an appointment with their neurologist. The MS Centers specialize, obviously, only in MS. I highly recommend getting in touch with a Center near you - http://www.nationalmssociety.org/living-with-multiple-sclerosis/getting-the-care-you-need/affiliated-centers-for-comprehensive-care/index.aspx

I am glad you posted on Health Central and I want you to know you are never alone in your quest to find your path to wellness. I wish you all the best, and please let us know how you are. Of course if you have any other questions let us know that, too!

Best in health,

Cathy

frustrated mema

10/24/11 7:44am

thank you very much for your response back. I was with a neurologist that was consintrated on lupas and all tests were neg. so he said he couldnt help me and sent me to a Rhumatoligist which was really great..he tested me for everything from fibromyalgia,rhum. arthritis,lupas,and so on every thing was neg and he told me he was thinking vascular or ms and sent me to a new neuroligist that specialty is ms(raleigh neuro in nc)..he has ordered a new mri of brain and also of the spine..he says the symptoms are ms like but the blood work is confusing to him and says there is possible more than one thing wrong...im not giving up I just feel that i need answers and am so frustrated cause the last 2 months what ever it is I have had the worst couple of spells ,one time it lasted for 8 days and the second time ir was for 3 days....I dont ever feel good but im getting these spells and i just dont understand ,it somthing every day

Cathy, Health Guide

10/24/11 8:06am

I feel your anxiety because it is so frustrating that you can't get an immediate diagnosis! Keep on top of your neurologist until he can give you better and more explanatory answers about your MRI and blood work. Call him, and leave messages if necessary, but let him know that you need answers and that he has to interpret his findings and give you more clear answers. Keep on top of him you find your answers. You are your best advocate, and as such you must keep on top of things. Keep a journal of how you feel each day, what your symptoms are and how long it lasts, etc. That way when you speak to your doctor you will have all of your information right in front of you and can use that as your guide.

If you are not happy with his answers, keep going to the next doctor until you get what you need. It's not only what you need, but what you deserve!

Beth Bj

11/ 1/11 10:02am

Hi,

I am in Cary, NC. Went to raleigh neurology too. Which doctor do you have?

I did some research on local doctors and ended up at Duke.

Beth

frustrated mema

11/ 3/11 10:43pm

Dr.Freedman...please tell me he checked out as a good one cause im so sick of bad ones that blow me off...

Beth Bj

11/ 3/11 10:57pm

Freedman has a great reputation and I wish I had been able to see him, but once you are assigned to a doctor, they won't transfer you without the doctors permission. Gets a bit dicey.

Mine wasn't much of an MS specialist and I only saw him twice, my very first visit ( way before MS was even considered ) and for the lumbar puncture. Only got to see the nurse practioner... which might have been ok with a different NP. this one liked to hnd out tissues, ignore your questions and tell you not to look anything up on the internet.

So I think you got lucky!

Beth

frustrated mema

11/ 6/11 9:14am

Thank God..I have only seen him once and he went over everything and set me up to get the MRI of the spine(which I have never had) and a new brain MRI with contrast an dthe other MRIs have been with no contrast ,,anyway I go back tomarrow to see him and get results..I dont want anything to be wrong but I need answers .as for I got lucky ...ITS about time cause I have seen some real doosey's as fa as DRs go and I have been blown off too...Have you gotten MS diagnoses??

Vicki, Health Guide

10/24/11 3:27pm

Hi frustrated mema,

Your name says it all. Frustration, which leads to stress, and more frustration.

It sounds as if you have been through the ringer. I remember how it felt to have so many symptoms and no answer why. Cathy gave you good advice, but let me add a couple of links.

I am not a doctor, but the tightness aroung your mid-section soundss like MS Hug. Here is a story from the MS patient perspective that she calls "The MS Hud Demystified." I hope this helps.

Here is another about Disorders that Mimic MS. This may give you an idea why it is taking so long. The doctors want to be sure it is MS before they say it is. It sounds as if you have seen enogh of going to new doctors, so I hope it does not take too much longer to find out if you have MS or one of these other conditions.

I hope this helps ease your frustration. Good luck.

frustrated mema

10/26/11 7:51am

thank you It is really comforting to know that Im not crazy and others are dealing with the same stuff I am...I thank you for the information...MRI of spine aand brain tuesday with more labs,hopfully I can get answers..can any one tell me why the posts say to do mri with and without contrast, I am not sure what my dr has ordered?

Cathy, Health Guide

10/26/11 8:25am

The simplest way to explain the contrast is to think of the "blacklight" bulbs (popular in the 60's ans early 70's). I had one in my bedroom, and my wall posters (The Beatles, The Monkees!) had areas treated with a certain material that allowed it, when we turned off our bedroom lights to view those parts of the posters that were treated with this material. All you could see in the entire bedroom were those parts of the posters that were treated with this material.

The same thing applies in MRI's. When you are given contrast, parts of your brain will "light up" and your doctor will be able to see more clearly whether there are any lesions on your scan.

Does that make sense?

If you want a more detailed explanation, check out http://www.radiologyinfo.org/en/info.cfm?pg=fmribrain

frustrated mema

10/27/11 10:02pm

makes perfect sense..thank you..I have had 3 mri of the brain and the same leasions are showing up but I have never had one with the contrast dye and never had a spinal mri...going Tuesday....hoping I will get some answers

Lyn

11/ 4/11 1:19pm

I know someone who has the pain in their ribs. These are what is called a MS hug and are very painful. I have had MS for 37 years. Some days I feel numb in my legs in my thighs. The lower part of my ribs hurt on some days. It's like haveing a mix-bag and everyday you don't know what to expect. I have the use of my left eye and it feels like something is trying to squash it like a grape.

frustrated mema

11/ 6/11 9:19am

Thats the way exactly how I feel ...every day is diff. symptoms aand you battle different thinks every day....my hug as its refered too is not really a hurt -pain type hurt it a squeezing,tightness very uncomfortable feeling thank u for your response...it makes me handle thing better just knowing im not the only one with these problems

Cathy, Health Guide

11/ 8/11 6:34am

Frustrated mema,

I think this is a good place to remind everyone that our symptoms are all different from each other. How an MS hugs manifests itself in one person does not mean it will manifest itself the same way in another. My MS hugs were never painful. They are tight feeling, annoying, a bit disturbing, but never painful. So please keep in mind that your symptoms are that - your symptoms.

Keep us posted, frustrated mema, how you are doing. We are all here for you.

Best in health,

Cathy

Beth Bj

11/ 7/11 10:35pm

Did you find any relief with the doctor ?

Beth

frustrated mema

11/ 9/11 10:19pm

well i wouldnt say relief..Dr. said they were really hard to read mri's,blurrry but he did see some leasons,he just didnt think that they looked like typical ms leasons.He is not ready to rule out ms but cant confirm a ms diaganosis so he is setting me up for an over night stay at the hospital and do a spinal -lumbar puncture and some more tests...Thank goodness he isnt giving up on finding answers for me...have had a few good days here lately ,havent hurt so much in my legs but the squeezing oround my mid section has been frequent and bladder problems have been terrible but Im gonna hang in there

Q: frustrated-are these symptoms of ms patients

Related Questions

Ask a Question