I havent been back here since December,I have a lot going on in my life. I have been having a lot of new symptoms lately and am getting ready to go to a new doctor, I found a speciailst in St. Louis, Mo that deals with Trigeminal Neuralgia and their website states that it is often one of the first sx to present itself in ppl under 40 and they most always check for MS as a cause of it. My TN started when I was 32 years of age, around the same time I started having elevated Liver Enzymes that lead to a dx in 2004 of Probable Autoimmune Hepatitis, which has not been bad enough to require any treatment at this point with the Corticosteroids. However, lately I have been having lots of new symptoms that still make me think I may indeed have MS. I want to share them with you here and see if anyone else has the same things going on:
1. I have Trigeminal Neuralgia, Classic Type 1 and Migrane Headaches
2. I am Anemic and have High Blood Pressure since I was 15
3. I have a Heart Murmur and Diastolic Aortic Regurgitation and Possible Congestive Heart Failure
4. I have Autoimmune Hepatits
5. Probable Sleep Apnea- Going for a Sleep Study soon
All of my health problems began when I was 32 with the exception of the Hypertension which i have had since I was 15.
Here are my most recent symptoms that I attribute to possible MS:
1. Numbness and Tingling in Hands and Feet and top of head and side of face at times.
2. Urinary Incontinence, dont know if its just stress incontinence when I sneeze and cough I tend to wet my pants all of a sudden.
3. NEW SX- Sorry if this is tmi, but a few weeks ago I was driving down the road and I suddenly lost control of my bowels, I didnt feel it coming on or anything, this is the first time this has ever happened to me, I thought maybe I had some sort of stomach virus or something but I wasnt even feeling sick at the time and it only happened once??
4. I had a flare up of the TN this weekend and it lasted 4 days and has ended already, once it ended this afternoon I developed this sharp pain in my upper left shoulder blade area, it hurts to even move it or turn in any direction or even to get up from sitting. I was lifting my 10 month old granddaughter to place her in her walker and I dont know if I pulled something out of whack or what then.
5, Jerking and tossing and turning at night
6. Loss of Coordination, sometimes I stumble across the room
7. Forgetfullness of recent events, Ill do something and go to do it again in a matter of mins because I forget I have already done it
8. Ill say things backwards sometimes, or oddly, its like I know what I want to say and I have it in my mind but sometimes I cant get the words out and I end up sarcastically saying "You know what I mean!!"
9. Pain in my Knee Joints, my knees have started to buckle underneath me some, they hurt when I try to get up on my feet from a sitting position
10. If I take a walk I dont get more than a block and my back is hurting excruciatingly, I have Muscle Spasms in my back a lot that feels very similar to Labor Contractions.
11. Last week I had some severe pain in my left wrist sorta like carpal tunnel and it was swollen pretty bad, it went away on its own after a week though, very paculiar, it seems I get pains in diff areas of my body and they only last a few days to a week and then they leave and suddenly Ill get a pain or stiffness somewhere else
12. I get really weak, especially after I have taken a hot bath or shower. Im tired a lot yet I get insomnia, which makes no sense, I have possible sleep apnea and if I sit down during the day I get really sleepy and if I dont get up Ill fall asleep so by the time bedtime rolls around I am overtired but if I lie down I know Im going to toss and turn for a few mins before I ever drift off to sleep and then when I do I know I am going to wake myself up pretty soon with a loud snore/snort and a gasp for air......This continues on and on all night.I have to get up two times during the night to urinate also. By early morning I can wake myself up because I have to go potty and I just lie there too sleepy to get up and when I do Ill wake myself up snoring, Ill just roll over and drift back off, only to wake myself up again in a few mins snoring, this continued the other morning a total of 7 times before I finally decided to just get up.
I should add that my mothers side of the family has a long history of MS and other Autoimmune Disorders:
1. My mom had Pernicious Anemia, Seizures, Migranes, Diastolic Aortic Regurgitation, Enlarged Heart, Type Two Diabetes, Underactive Thyroid.
High Blood Pressure
2. My Oldest Sister, Heart Problems, had a Heart Attack a couple years ago, also now has Type One Insulin Dependent Diabetes,High Blood Pressure
3. My Second oldest sister has an Underactive Thyroid, a lot of bone, joint and muscle issues, and what seems to me like either Fibromyalgia or Chronic Fatigue Syndrome, Panic Disorder and Anxiety as well as OCD.
4. My Aunt, Mothers Sister, Heart Problems, Diabetes, CHF
5. Mothers Sister, High Blood Pressure, Heart Problems
6. My Mothers Father also had the Diastolic Aortic Regurgitation
7. My Cousin, (My mothers sisters son) has MS and TN
8. My Second Cousin (Son of the Cousin I listed above) Has Type 1 Insulin Diabetes, Childhood Onset and MS
9. Another Second Cousin-(On Mothers Side)
Has Childhood Onset Insulin Dependent Diabetes
10. Another Cousin on Mothers Side- Has Insulin Dependent Diabetes, Heart Trouble and High Blood Pressure
11- My oldest son was born with Hemolytic Anemia and Optic Dysplasia as well as Interstitial Pneumonia. He also had Psoriasis
So.....as you can see I have a long history of Autoimmune Diseases in my Mothers Side of the Family. And a couple cases of MS with TN. So since I have TN, and the AIH, then I am almost betting I have MS too.
You have had it rough. I would print what you have written here and ask the neurologist what he thinks. You have symptoms that are mixed with physiological problems. Allow a qualified doctor to sort things out for you.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><