MS is a different experience for each individual. It seems that no two stories are the same. So I thought that it would be a good idea to let you know how it has affected and impacted me. As you read this page you will likely note that I am very fortunate compared to many MS patients. MS is often described as an invisible disease because people often times cannot visualize the impact on the MS individual of this insidious disease. I can tell you, though, that it is not received well when people have told me "you don't have MS, you look to be doing quite well". You will likely notice that many of the problems that I have with MS are not going to be visually noticed. That is, not yet anyway. I am progressing toward that inevitability. If I do not take a stand against MS and fight back I will certainly be confined to a wheelchair and then a bed. That is just the stark reality of how MS works.
As I write this entry into my blog I am 54 years old. My first neurological problems started in my mid to late 30's. I started having burning sensations on both thighs. Not intense burning, but burning nonetheless. Disease progression has now led to the tops of my feet to have the burning sensation also. During relapses I will get burning sensations down my arms and hands also. The fortunate thing is it will go away once the relapse is complete.
My early flares had to do with my ears of all things. Only about 5% of MS patients have this symptom. My ears would hurt and were ringing very loudly. I did not want to be around any kind of loud noise. My balance was negatively affected also. I began to see an otoneurologist. He tested my ears and said that I had the hearing of someone 20 years my elder. At that point I knew that I was destined for hearing aids. My ego wasn't ready for hearing aids yet, so I went several years without them. He also felt that my balance disorder was due to a vestibular dysfunction between the left and right ears.Which means one ear is hears with a higher volume and the other ear hears with a lower volume. This mismatch of hearing is responsible for the balance issue. As the disease has progressed I have now lost functional hearing in my left ear. I wear a hearing aid in the right ear and still find it difficult to hear many things. Wearing the hearing aid in the bad ear definately helps with direction and most likely contributes to balance improvement.
When I started the issues with my ears I also started having daily headaches. I had a daily headache for more than a year. The neurologist that I was seeing at the time thought that I was suffering from migraines and prescribed numerous medications. Of course none of them worked. I started seeing another neurologist and fortunately he was able to finally stop the headaches with a combination of medicines.
During the early years of my symptoms I began having bladder issues, which sent me to a Urologist. He felt that I was suffering from infected prostate gland. It is very common for MS patients to have bladder issues and it has to do with the nerves to the bladder. Not surprisingly his treatment did not help resolve my bladder issues. In hindsight one wouldn't expect antibiotics to help with a neurological problem.
Just to set the record straight, I am not blaming any of my doctors for having a difficult time treating my ailments. MS is a difficult disease to diagnose and treat. I did have numerous MRI's. None of them showed the hallmark signs of MS. The diagnosis of MS is a clinical diagnosis.
As time marched on I continued to add on more deficits. I know suffer from voice issues. Everyday it sounds like I have Laryngitis. This is another rare symptom among MS sufferers.
For the last two years I have begun to experience leg weakness. Tightness in my muscles and particularly my legs. My ankles now have spasticity in them and will likely move up the legs. This is quite common in MS patients. To me this is a tell tale sign that loss of mobility likely is right around the corner.
Fatigue and sleep problems have begun to really interfere with my everyday health. I have been taking medication that has helped to deal with these issues.
As you can see I do have some issues with MS symptoms. However, they cannot be readily seen. I am very grateful that I have not had rapid disease progression. Having said that, disease progression doesn't always move at the same rate. My goal with HSCT is to stop the disease progression, not reverse it. My treatment would be a huge success, in my mind, if I do not add new symptoms on a regular basis. Trust me, I value my eyesight, hearing, walking, talking, and enjoying life way too much to just accept the status quo and continue physical deterioration. Any symptom reversal would be considered icing on the cake in my opinion.
Now is the time for me to fight back against MS. MS has been attacking me unabated for far too long. It is time for me to counter punch the MonSter!
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