My name is Kimberly, I live in Northwestern United States. I have been struggling with symptoms for years and had no idea this could be MS. I’ve had a hard time going up stairs as well as walking on flat ground for several months, maybe a year. My legs feel as though they weigh a hundred pounds each. I have very bad pain in my muscles and all my joints. I’ve had severe problems with my urinary/bowel systems. I have double vision and floaters at all times now. My skin itches terribly 24 hours. I am unable to keep my blood oxygen stable- so I have to wear oxygen at all times. This morning my face was burning and red, it hurt very much. I have dizzy spells as well as being unstable on my feet at times. Most of these symptoms go back at least 10 years.
I am in tears writing this because I know I have to go get corroboration from a neurologist soon. I don’t know if I will feel better or worse if it is positive.
Your thoughts are so much appreciated, and any suggestions on how to help any of these symptoms in the meantime will be wonderful. I don’t know if I am fooling myself, or if I really found what I am suffering from.
Thank You in advance for all your help!!!!
Kimberly
Written by
GrmaK
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Welcome to the forum, GrmaK , aka Kimberly. Please don’t worry about what it might be. Let the neurologist tell you what it might be. Once you discover what ails you, and then you both can develop a treatment plan. Think about what can be done, and there is so much that can be done compared to what was available for treatment for ‘ms’ just 5 years ago. Sending you positive thoughts and I look forward to hearing more from you when you know more. In the meantime, you can look at mymsaa.org for more information.
Hello and welcome to our extended family Kimberly. We are so glad you have found us. MS symptoms are all over the board and vary from person to person dramatically but some of your symptoms concern me especially your blood oxygen level. I would suggest you get to a doctor as soon as possible to be checked out. Have you seen your Primary care doctor lately? Perhaps You could start there and they could send you to the appropriate specialist and/or neurologist if that is where they want to start. Please don't put it off. The only other thing I would ask of you is that you stay in touch and let us know what they diagnose you with. I am sure there is much we can learn from each other. Remember we are only a post away if you have questions or concerns. Also remember we are stronger together. Fancy59.
You certainly have a lot of difficult problems to deal with. But looking at your constellation of symptoms, it does not align with the diagnosis of MS. Your first appointment should not be with a neurologist. You need to start with a very good internist who can sort out what specialists you need to see. You need an expert, not a mid-level practitioner (i.e., a PA or NP). Good luck on your journey.
I agree with Fancy59 & BettysMom about seeing an internist. You stated some symptoms that aren't common MS symptoms such as your blood/oxygen levels. It's also possible you have more than one thing causing the different symptoms. Prayers you find an answer soon & keep us posted on your progress.
Ditto. It's not uncommon for MS to present with other health problems, but your oxygen levels are very concerning. Get that resolved first and then focus on the rest of the issues.
For now, treat your symptoms individually. If you're tired, rest. If you hurt, try an aspirin variation, something like Icy-Hot, or a heating pad. Also, have you ever been tested for allergies?
I agree with many to find a physician that can help you diagnose all of these symptoms and do blood test. I would also make an appointment with a rheumatologist.
I have been seeing an internist for two years and I see pain specialists every week. I have an appointment tomorrow for a chest x-ray, but the pulmonologist gave me one a year ago that was clear with same symptoms. The reason I thought MS might fit is because research says that the nerve damage in the chest can slow the breathing and cause the low o2.
I’m hoping my pain doctor tomorrow will ask for a few other studies to start to tell me what is actually wrong. I can’t go on as we have for years just treating one thing at a time.
My legs and knee pain from last week that was so bad has subsided, however I am still quite weak.
I just hope someone can help figure this out. I’m sorry to bother your forum, since I don’t know what I have
Thank you so much for your input!!!! And especially your kindness!!!!
Hi Kimberly. Have you ever seen a rheumatologist? I have Sjogren’s in addition to MS and she helps me with the joint pain. Best of luck to you as you navigate through the maze of ailments in search of a diagnosis!!
Don't apologize for "bothering us on the forum". You are not bothering anyone in the least! I wish you well finding answers. Let us know what you find out! I was so relieved when I was told I had MS because I knew then what it was and answered a lot of questions. I hope when you find out you feel the same. At least appropriate measures can be made to help then. Best of luck.
I have an oxometer . Toldly understands. There’s been times when passing out is the only option . I get up very low since my stumic got sick a I don’t know arter dorry
i'm so sorry you've ben going through all this alone. i hope you see a neuro soon. don't forget to write down your symptoms and if you can remember when each began. welcome🤗
I am so sorry that you are having to deal with all of this. The not-knowing is the worst! I was diagnosed over 42 years ago, and I still Remember! I thought I was losing my mind. I would be walking down the street, and the next step I took was so unsteady, that I couldn't feel/find the sidewalk under my feet. Have you talked with your Primary Care Physician about a referral to a Neurologist? Have you had a MRI recently? Ever? I think a MRI might be a good next step for you. Your Primary Care Physician can order one if they're willing to do so. The results can possibly either allay your fears, and show no signs of MS lesions on your brain, brain stem, or spinal cord. Or, in the other extreme, it could give you a definitive diagnosis/answer, and show that you do have MS or some Neurological issue. Either would give you an answer to one of your big questions, or the MRI films( results)may show nothing. It is an expensive test, but it is painless, and your insurance should pay most of the cost. You aren't bothering anybody on this forum, so no apology is necessary! You are welcome, and please ask whatever questions you have. It is hard, being alone and having no one to talk to about all this maybe scary stuff! You will get through this, and you will find the answers that you are looking for. I hope that you DON'T have MS, because I have lived with it most of my life, and she is not a fun companion. I do hope, and pray, that you and your Dr's will soon find whatever is causing you all this pain and distress, and can help you cure or deal with it! Please keep us posted on how you are doing, Kimberly. I am not a Dr., a Nurse, or anything medical, and the only MS case I know, is my own, and I am an expert on that one! It is like no one elses, symptoms come and go, sometimes so strange I don't even recognize them for what they are, until they have lasted for a while, then a while longer. You can ask me anything. I may not know,and I will tell you if I don't, but you can ask! Linda
Your comment about walking and not feeling the sidewalk really resonated with me. My first MS attack was in 1974 when my left leg would go asleep while I was walking. I had to look at the leg to see where it was, especially walking up or down stairs. That problem went away after about 3 months, and was not diagnosed as MS at that time. After the problem went away, I had no other symptoms for about 10 years when numbness started, along with a couple of other changes just slowly creeping in.
Thank you all so much. I have been seeing an internist for quite some time. He ordered a chest x-ray to start with. He is good, if a little slow getting around to things I see my pain doctor today and I am hoping he is willing to order a lumbar puncture and other stuff. Between the two, I hope to figure something out, hopefully get some answers.
Right now it is so hard to type because of the tremors!!
Thanks again, you are all so welcoming and sweet. I hope to get some answers soon, and I will be sure to get back and let you all know.
Hi and welcome to a wonderful group of MSers. Sorry you are going through this. I know about heavy legs, muscle pain (spasms) and itchy skin. I was diagnosed with MS three years ago. And I am currently dealing with the same problems you are dealing with. My suggestion is that you see a neurologist and get the medication you need to help control the pain and itchy skin. 🙏🏽💗
Thank you so much!!! I can’t have an MRI, but they ordered me a lumbar puncture and chest X-ray. I’m nervous. I hope to figure out what is wrong with me. Good or bad. I just need to know so I can understand the demon-you see what I mean, right? I’m having a lot of issues with my eyes the last few days. It scares me, but I’m headed to an ophthalmologist 😒 Everyone keep your chin up and I will too!!!!!
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Still fighting
Get routine checkups 
Here is a letter to the people in my life who I call the normals. I hope it all fits. I can be a little mouthy from time to time.
Secondary Progressive
Excess Vitamin D
